Hepatitis C Community
Long term side effects of interferon
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This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

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566 Comments
Viewing 401-600 comments:
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Avatar_f_tn
I completed my treatment in 2008 and since then I have developed all sorts of joint and bone problems after treatment. Are you aware of anything that helps?
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Avatar_m_tn
Just checked into this thread after not being on here a while.  Read what was posted.

Combination therapy doesn't cause side effects.  It causes injury.  Severe injury.   Brain damage, crippling arthritis, disfiguring psoriasis, psychological injury, immune system disorders.   The doctors are blind to it because the gasroenterologist is not the guy who treats all the combination therapy injuries.  They don't want to know.  BigPharma doesn't want them to know.  

Please, all who have suffered from combination therapy write the FDA.  People are not being adequately warned.  

We have in America become prey for corporations.   We really have, in so many different areas of our lives - banks, BigPharma, BigAg feeding us tortured dirty animals and corn.  It's crazy.  
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Avatar_m_tn
me too.  terrible psoriatic arthritis.  Read Pagano's book on treating psoriasis.  It may help.  

the more you avoid dairy, sugar, refined wheat, coffee, nightshade vegetables, processed and factory meat, the better you will feel.  i find bicycling helps too, a lot.  

Of course, the doctors will want you to go on Enbrel.  That's like jumping from the frying pan into the fire.  
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Avatar_m_tn
i agree
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Avatar_m_tn
Brandon:  my brain was just gone for about 30 months post treatment.  The fog has started to lift, thank God. I am still not where I was before.  I so know what you are saying.  

Yes, "you'll feel flu-like symptoms" is a pretty pathetic warning.  Heck, I read the warning pamphlets front to back and still had no idea that waht happened to me could happen.  No idea.  

Nor, judging from statements he made when the symptoms came on, did my doctor.    
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Avatar_f_tn
I wonder if this is the longest thread in the history of the forum.  I bet it is.  
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Avatar_n_tn
Its close, but I bet not the longest ever!!  We have had some real lollapalozers in the past!!  Its always fun on the forum.  Bottom line...lots of opinions and information get aired and shared.  And that is what this place is all about.  Its a great mixing bowl of observations, ideas, experiences, opinions, debate, and critiques.   All in good spirit usually...even though some of our skins get a little thin at times....me included.  In the end, its all open communication with little censorship, and covers the entire spectrum of viewpoints.  Wouldn't have it any other way.

DoubleDose
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Avatar_m_tn
They told me the same thing!  Obviously that was an untrue statement... I took interfieron over 10 years ago and my quality of life has fallen substantially ever since. I think I would have been much better off if I just kept the HCV and made my peace with God and enjoyed the time I had left... This is the first time I've visited this blog and as I read the posts, it's as if i had written them myself. It makes me sad to know that there are others who are experiencing the same problems I am, no one should have to feel this way.  Does anyone know how to make this better?  
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253566_tn?1219683299
Well, as you say about HCV,  you have to do the same with your PIS and make peace with it - and hopefully find a doc who understands how to deal with your specific syndromes of PIS and if you cleared the HCV then stop worrying about the liver and take some other crappy meds to maybe make your life a little better.

That is what all my docs are trying to do.

We have the most success with laughter. The best and most prescribed med around my household :>
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Avatar_m_tn
just caught up with this forum.  i treated three times, each for 48 weeks and have had no real long term effects from the treatment.  I treated in:  93, 2001 and 2009 - each about 9 years apart.  I feel bad for those of you who have experienced such long lasting side effects.  i hope you all improve.
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1841021_tn?1318637756
my hubby fits this perfectly. Happy to be "cured" but in a lifelong fog now. I believe he lives in a state of depression now.
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Avatar_m_tn
I am trying a new clinic called  Holtorf Clinic  in the LA area. They specialize  in fatigue and thyroid issues. The are doing blood test that no one else have looked into. So far they found a C4a level tat is 4 times normal,
. It is a test that is not widely accepted by some.  They also found hormone and testosterone  levels out of normal range.
The C4a is sometimes an indicator of Lyme disease but I tested negative for that.  The next round of blood test they are testing me for other tick,flea or other insect transmitted transmitted diseases.
I don't think any of that is what is causing it but I'm not going to leave any stone unturned. Tx did something to my immune system and maybe one of those has taken hold when it normally wouldn't have.
Holtorf is very expensive and insurance won't pay much of it but I would spend everything I have to feel good again.
If we all list things we've tried then maybe we can help each other. If someone finds something that helps others could move that direction.
We could start a new post.  PIS / things I've tried
People that don't have  PIS don't need to come there to make comments on how we should feel and think
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1711889_tn?1308345903
thanks for what you . I am not anxious to try "the triple"- don't have a career but would like to not think about the dterioration that will occur- I just want to enjoy my grandbabies.
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979080_tn?1323437239
I am now 12wks post a "beefed up" 60wker of dual tx and I can`t speak of  any residual sx.
:-)

b
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Avatar_m_tn
great to hear Bali,,,best to you!
Will
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1669790_tn?1333666195
Hey Bali, nice to hear.  Hope all is good for you.
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Avatar_n_tn
I'm a guinea pig in this Hep c experiment.  I am in my third tx all using  interferon dating back to clinical trails in 98,I also did another trail using something called interleukin 10, I think it was 2000.. My second tx was in 02 pegintron and ribavirin...I relapsed after being non detectable.  I'm currently in triple therapy with boceprevir. I'm 62 years old and up until 6 weeks ago I was surfing better than ever and staying in the water longer than the 16 year old kids.  I'm currently in my 16th week and non detectable and intend to complete the tx and I be in the water in the spring time out surfing the 16 year old's again..
Whether this tx has lasting sx is I think specific to the individual.  Just as all of us react to the tx differently and all of us have different sx and different outcomes....who can generalize on the anything about this tx...too many variables.
I have no intentions of having this tx do anything other than kill the virus.
Keep the faith.
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Avatar_f_tn
I have been following your posts for sometime.  Someone asked a question in the forum about sx and the response was something like "Oh I never had ANY, You'll be fine, I've never felt better! "  I HAD to INTERJECT MY OPINION which in effect was "I WENT THRU HELL" get all the info you can, select the doctor you feel most comfortable with, consider being out of work for a year, consider not being able to continue to do the job you currently have, consider the fact that you may become disabled, ect.........because THIS is what I went thru and the only thing I expected was to have flu-like symptoms for around 2 weeks, maybe miss work 1-2 weeks and then I could return to work.NO ONE SHOULD EVER TELL ANYONE THEY WILL BE FINE!!! BECAUSE NO ONE KNOWS!
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Avatar_f_tn
I have been reading the posts on this site for the last week or so.  It has been such a relief to know that I am not the only person that has been dealing with some of the issues I have encountered during tx and post tx.  I was diagnosed In 1994 with Hep C.  I went through treatment which consisted of Interferon 3 times a week.  I completed that treatment but was a non responder. (2b gen)  I didnt clear the disease but it put me back in check and my viral count was super low and sort of what I called "remission".  In 2000 I had a biopsy and was told everything looked good.  The fatty liver was gone and I was doing great.  I was offered the new treatment which was the Peg/rib combo but due to a misinterpretation of explanation by my Dr.  I thought I didnt need it.  I was in a good place in my life and the doc said there were a lot of side effects with the new drugs like depression and he said it was my choice and didnt sound urgent in his request so I didnt think I needed it.  Last year I noticed I was getting really tired and I was always complaining of feeling like crap.  I decided to ask for another liver biopsy since it had been almost 10 yrs.   My biopsy came back bad and I was told that I needed to begin treatment if I wanted to be around in 15 yrs.  If your having your liver functions checked every 6 mo's like a good girl but it isnt showing anything remarkable: Then you have a biopsy and it says the opposite why dont they just opt for the biopsy instead?  There I was thinking everything was hunky dorey with no elevated viral counts and my liver was slowly being destroyed.. They never seemed concerned said everything was good blah blah ..blah... so here I am ... 2 and half months post tx... and feeling aprehensive
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Avatar_m_tn
I'm 62 & gonna start tx again.  Cirrhosis, big spleen, low platelets, tired & depressed. Enjoy a good cigar. Good wife, dau., grdson. Enjoy reading. Cut way back on body surf & mtn climbing. Ready for Boceph...or not, here I go again! Yeehaw!!!
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1689583_tn?1387755994
I am now very confused and scared after reading this long post. I am supposed to start in 2012 treatment . Very minimal inflamation (inflammation), no cirrossis or serious damage now I am ready to throw in th etowel from listening to all of the comments , now I do not want to treat .
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Avatar_n_tn
The decision to treat or not is a tough one.. I prayed on it and decided to treat. Remember that these forums are sometimes used to blow off steam.  I don't know how accurately posts on these forums are to portraying the general experience of the tx. Good luck what ever you decide.
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1689583_tn?1387755994
I thought after researching about this disease and the excitement about  the  new treatment I was in a good place at the right time, I am no longer sure abut that . It ook me some time to accept  this and to prepare for the treatment mentally and physically , now  all the horrible long term effects that are life changing ? I am seeing my doctor in January and maybe I will postpone treatment and wait for next new breakthrough if able to. Now  I am depressed .
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Avatar_m_tn
I  can only speak for myself, I finished a 48 week treatment in 2005. I started with 11 others at the VA, I was the only one who finished. To this day I still have extreme side effects from the peg/ribo combo, For someone to suggest otherwise makes me wonder there motives since I know so many other vets who like me struggle on a day to day basis.
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Avatar_f_tn
I was treated and cured many years ago as part of one of the original studies in Washington, DC.  A damaged thyroid gland was the only side effect that lasted (my hair grew back; I stopped feeling like I had the flu; I could sleep again; I regained my energy, etc.)
SOMETHING NEW...I have basal cell carcinoma patches popping up every couple of weeks on my legs.  I've never been a sun person, never enjoyed the sweat.  But this is crazy--six spots on one leg and one just popped up on the other.  This was an immune system treatment.  Could this be related?  Every time I go to the dermatologist he tells me he'll see me in a year.  He seems to be surprised that I'm developing these so quickly.
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Avatar_n_tn
That is very interesting....I have also had four spots on my legs removed in the past three years (post-tx), and one form my arm, and one from my forehead.  Never had anything like it before tx, and new ones seem to be developing.  I also have developed a sort of permanent rash on cheekbones, that my Dermatologist said is Rosacea, and another spot on cheek that he said is Sebhorreac Dermatitis.  Never had ANY of this stuff before tx.  I know one of our older members, Jim, had major issues with rash and Rosacea after tx.  I didn't even think to connect the pre-cancerous leg patches to the tx....but just like my facial rashes, I will bet money its a direct immune system response to the treatment.  For me, it seems that much of these after effects seem to be getting worse, and more constant.  Tendonitis is another issue that I am developing in legs, arms, shoulders, etc.  Others on the forum have also complained of this problem post-tx.  This of course goes along with frequent costochondritis, joint pain, mouth sores (cheek and tongue), irritated dry eyes, fatigue, and brain fog, .... through almost 10 years of being SVR.  Is it any wonder why I place an asterisk after the word 'cured*' !!!  Probably would read better as cured???  

DoubleDose
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Avatar_f_tn
I DID TX BACK AROUND 2006/2007 AND WAS UNDETECTABLE WITHIN 2 MTHS. I WAS ON INTEFERON AND RIVABARIN FOR 6 MTHS. HAD TERRIBLE DIARHEALL, BUT THAT WAS IT.OH I ALSO GOT TIRED EASILY AND SLEPT ALOT. NO SX SINCE TX. STILL UNDETECABLE.
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1491755_tn?1333204962
This is good to hear.  I am post tx 10 months, some days I swear I've never felt better.  But some days I'm fatigued for no reason, but they are decreasing in frequency.  Joint pain all gone.  I'm glad I did tx glad to be SVR and looking forward to ac healthy future.  
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1840891_tn?1383280315
I hope all will read the post by jwbeenz  above. This is similar to my situation. I've had HCV since 1984 but was going along pretty well, with one decent biopsy early in the game followed by lots and lots of regular blood tests and ultrasounds. Everything indicated that I was not at any serious risk from the HCV. Then in 2004 I had major abdominal surgery for an unrelated disorder. I woke up to the news that I had stage 4 cirrhosis, a liver that did not appear to be any healthier than the failed ones they remove in transplants, and a suggestion that I enjoy life while I can. I followed that with SOC treatment but relapsed, and am now doing triple Tx and praying that it works this time, before I really do run out of time. Counting on the blood tests and the ultrasounds to warn you may make you feel safe, but it may also be a false security.
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Avatar_f_tn
Pick your poison.  All I know is that if I had had interferon I would have regretted it for the rest of my life.  Not only would it not have cured me but, because I already have a severe skin condition and a career which is dependent on my being able to work consistently, it would have damaged me big time.  The people on this thread are mostly complaining about disability from the treatment.  Today someone posted about how interferon has nearly blinded him.  Thank goodness that there will soon be a way to be cured from this awful infection which does not disable people or ruin their livelihoods.  
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Avatar_f_tn
The one thing that we can all hope and pray for is that an oral regimen with mild sides will pass muster soon and people like you with your cirrhosis and me with my autoimmune problems will not wait too long to treat.
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Avatar_m_tn
Blow off steam?

One finds some small measure of comfort in hoping that the ceaseless suffering and loss one has experienced from treatment might be conveyed and save another from suffering.  

Interferon / riba combination therapy is way worse stuff than most gastroenterologists even come close to comprehending, IMO.  

If you have a doctor encouraging you to treat and that doctor has not told you that you could wind up disabled, brain injured, covered in itchy rashes / psoriasis, in pain, etc, get thee to another doctor, because yours doesn't know what he's messing with.  

Addendum - your doctor should also tell you that they don't know exactly how interferon works, but it amps up and whacks out your immune system, killing the virus in many cases, but often leaving your immune system amped up and whacked out for the rest of your life.  

If you are not hearing that from your doctor, you are not hearing the truth or he doesn't know it.  
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568322_tn?1370169040
I hate to have to tell you this and if I'm wrong I'll be happy.

All your symptoms...the tendonitis, costochondritis, joint pain, oral ulcers, irritated dry eyes, brain fog, fatigue, precancerous spots, and permanent rash on cheekbones....are symptoms of Lupus. Especially the butterfly rash. Men seldom get Lupus but interferon can cause it.  

I am so sorry.  I can only imagine what you've gone through all these years. I suggest seeing a Rheumatologist.

Wishing you all the best,

Co
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568322_tn?1370169040
BTW,  Peyronie's disease is also a symptom of  Lupus.


"Men having the inflammatory condition called Systemic Lupus Erytematosus more often get Peyronie's disease."

http://www.lupusmctd.com/index.php?topic=484.5;wap2

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1669790_tn?1333666195
"All I know is that if I had had interferon I would have regretted it for the rest of my life.  Not only would it not have cured me but, because I already have a severe skin condition and a career which is dependent on my being able to work consistently, it would have damaged me big time."
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Have you trt before with interferon and failed?  If so, I understand your desire to avoid another round on trt including interferon, especially if you were a slow or null responder.  If not, how can you make a profound statement to say that it would not have cured you?  How could you know that? And how could you anticipate the side effects ahead of time, since even the best doctors can't predict what will sx will present a problem.  

I hear your concerns about your autoimmune problem and that you need to function on all cylinders due to your demanding career.  My career is also very demanding, but I've been able to continue to function and perform without missing any work.   You continue to promote the oral regimine you are currently on as the answer for all - at least that's what I'm hearing.   I think your promoting these orals is premature until more trial data is published.  

I do wish the best for you on the oral regime and for all those treating in the future, but for now your message overstating the terrible effects of interferon are overstated, imho.  I do realize some experience very negative effects, but the majority don't.   It does give hope to those who have the time to wait for alternative trt, but could potentially scare away other new members considering current options.
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Avatar_m_tn
but for now your message overstating the terrible effects of interferon are overstated, imho.
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+1

Btw ..I had no lasting sides(like many people) from interferon.........for those that are currently on it....
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Avatar_m_tn
meant  " I had no lasting sides from Interferon ",   like many others that don"t from interferon
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1798872_tn?1346168185
Hi im 49 and went thru both interferon and pegasys  rivabarin both times,now im being treated for lupus,that i didnt have a few years ago.All i know for sure is i feel worse now then before treatment,ive read some say didnt you read the warnings-YES- i did but im sure most of us did.When you find out you have something as deadly as hep.c most of us are scared to death and willing to try anything.That being said we are now paying the price of what we prayed would not happen to us.It seems to me that i feel worse as time goes on,after finding this blog now i know why.Yall are in my prays. :)
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1798872_tn?1346168185
That is one of the truest statements ive read on the internet,way to go!!
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Avatar_f_tn
willbb:  Btw ..I had no lasting sides(like many people) from interferon.........for those that are currently on it....

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Since, unfortunately, you were a non-responder to treatment, you didn't do a full course of interferon treatment.  If I recall, you didn't go beyond 17 weeks.  It would be more appropriate when you make such statements that you also come out and say how long you were on interferon.  There is no telling what your end result would have been if you had been experiencing, for example, bone pain and had gone the duration of 48 weeks like other Genotype 1 persons do, barring unfortunate circumstances such as your own or treatment-ending side effects.  You have no idea what it would have been like if you'd done 48 weeks any more than Curiouslady is able to say that interferon wouldn't have cured her or that she can say definitively that interferon would have disabled her from working.

I did treatment for 34 weeks instead of 48 weeks when my treatment was cut short due to adverse effects that compromised my immune system to a dangerous level - attributable to the trial drug, not the interferon.  Thankfully, I'm SVR in spite of all that.   I do have some permanent issues that I refer to as "souvenirs" that are a result of treatment with interferon.  I have permanent thyroid issues that were triggered by the interferon and I have significant arthritis that I didn't have prior to interferon.  That's tempered by the fact that I'll never have to do treatment again and I'd trade those for progressing liver disease in a heartbeat.

What is needed is awareness.  It's a fine line to walk between painting too rosy of a picture that dangerously minimizes the risks and indiscriminate fear-mongering that dangerously blows the risks out of proportion.  Not at all easy and I respect that people care about the impact of their words.  Interferon is not a benign drug to take and people should be aware of that.  That should also be weighed by the fact that someone with HCV has liver disease that isn't going away on it's own.

Be aware of what the risks are with interferon, be aware that it may impact you in unforeseen ways but also be aware that it can cure you of your HCV to undergo interferon treatment and can potentially save your life.  As well, be aware that there are new treatments coming along and determine with your doctor whether your situation means you can wait if you don't want to or can't do interferon.  

Risk vs Benefit analysis.....the two toughest decisions I've ever had to make was...do I go through treatment now or later? and ...do I stop like they're telling me to at 34 weeks or do I go cowboy and continue anyway?  

NOT easy stuff here....and look forward to this continuation of treatments that are shorter duration AND less toxic as we go along.

Best wishes to ALL on this....and particularly those who have to do it more than once.

Trish
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Avatar_m_tn
sorry ..  18 weeks...and  was one of the fortunate ones to have no lasting sx. from  what INF. was  taken.... but that is just my experience ....
Best...
Will
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179856_tn?1333550962
Great post Trish!
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Avatar_f_tn
You ARE fortunate to have no lasting side effects...I only wish you were fortunate to also have a response and SVR as I was able to get to in spite of side effects and lasting (manageable) issues.  I sincerely wish you didn't have to do this again and I hope you have no side effects next time AND an SVR.

I think it's important for people to talk about their varied experiences and knowing that a number of people get through this with little side effects is encouraging.  Many times people come in here with a circumstance such as... "Has anyone SVR'd with only X number of weeks of treatment?" looking for hope.  

There are also people looking for support in dealing with their post-treatment issues and I'm thankful for the sharing with people who have joint pains like me.  I know a fellow who has tinnitus after treatment and there's something oddly comforting about knowing you are not alone, at the least.

Tough stuff to discuss here for sure.
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Avatar_m_tn
My response was only to relay my  own experince to give those now on Inf. some info,,that is does not happen to everyone and my sympathies have always been to those that have not been as fortunate..
Will
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Avatar_f_tn
My decision to wait, again, was a superior one based on knowing now that I am GT 1 with a TT allele and no treatment available in 1992 except interferon as well as ongoing knowledge of  a low degree of fibrosis.  I was fortunate to come from a medical family which helps in making choices such as this one.  Please note that I have not shared with anyone on this list what I do for a living nor any specifics about why SOC would have damaged my career.  

I am truly sorry for your pain.  Part of my concern is that people will continue to treat with interferon even though research information and their own personal health and liver status indicate that they can wait as well and do not have to chance going through what you are going through.  I wish that people here would advise more caution when the person clearly indicates that their condition is not severe.  There seems no compunction in encouraging others to treat or tilting the advice in that direction despite all of the evidence available about lasting side effects and often, despite the individuals stated concern about the side effects.  I don't understand why.   This last is not so much directed at you Trish but at everyone who has read and contributed to this thread and others related to interferon.   Peace.

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Avatar_n_tn
Thanks for your comments.  Therein lies the rub, as they say.  I have had several full workups by a very top end rheumatologist, and he saw all the same connections to Lupus...EXCEPT, the Lupus blood chemistry does not seem to match up with my test results...in otherwords, I have a "Lupus-Like" disease pattern, but the blood tests specific for Lupus are chiefly negative or just 'different'.  Same with RA, and Sjogren's.  And I mean he ran TESTS!!!!!  Thirty or so specialized, very expensive tests to really verify whether or not it was 'classical Lupus, or RA or similar.  He says that he has seen this same set of symptoms in a good number of post-tx patients who were also SVR, and the pattern seems to be very similar.  He calls it a post-interferon autoimmune illness, or a 'Lupus-Like" illness.  Its weird that many of the autoimmune markers are entirely absent...but my symptoms are spot on for Lupus...albeit a mild to moderate case...not severe.  So maybe the Interferon causes a "Lupus Type" illness in some of us, but its entirely different in its chemistry from classical Lupus.  Maybe they need to come up with new tests to identify THIS particular illness...because their standard tests don't 'see' the illness...and it sure is there...and manifest in a variety of obvious physical symptoms and physical changes.

Maybe more will be discovered as additional people join the list of post-tx problem cases, and pursue answers with their doctors, and rheumatologists.  Its a lonely situation!  

Thanks again.

DoubleDose
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Avatar_f_tn
Your decision to wait was what you felt was best for you taking into account all your own specific variables.  That doesn't mean it's right for everyone.  And to say that you being a TT alele would have meant you would not have been cured with INF and Riba treatment is inaccurate and goes completely against the statistics.  Those with TT allele are considered to have a lower rate of SVR but not a 0% chance of SVR.  You also need to consider there are those with TT allele who may have a more advanced degree of fibrosis than you who cannot afford to wait for non-INF treatments.  Why would you make an inaccurate statement that takes hope away from someone who needs to cling to hope?  People do get SVR against significant odds and in my personal opinion, you should take greater care to consider other situations beyond your own.

I think you overstate the case here for the amount of urging people to go into treatment that happens on this forum.  There were many suggestions to hold off on treatment to wait for the new drugs.  There are many suggestions here to consider all your variables and not rush into treatment if you are early stage damage.  You'll also find people suggesting watchful waiting if one does wait.  You'll also find that we tell people to slow down, take their time and get educated and understand all their options and know their own particular condition and know what they're getting into before going into treatment.

Everyone has their experiences and they bring a bias sometimes.  If you're someone who has lost a loved one to liver disease, it may scare the crap out of you to hear someone is waiting to do treatment.  However it's important that we think beyond ourselves and realize every situation is different.

Thanks for your thoughts however I don't need anyone to be sorry for me.  I'm incredibly active and involved in life and my physiotherapist tells me I can do practically anything I want, can cycle, work out on weights, can play squash even, just ixnae on the running for now. She also tells me I may be able to improve my situation with targeted muscle-strengthening exercises. I live a good and full life with minimal interference.  Nobody needs to waste any time at all feeling sorry for this SVR gal.  

Wish you the best with your treatment.

Trish
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Avatar_m_tn
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1
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568322_tn?1370169040
It's not unusual for Lupus tests to be negative.  It's best to do them when your symptoms are acting up

While most people with systemic lupus have positive ANA, in a small subtype called Ro-lupus, ANA stays negative. The test is hard to perform, so different labs can get different results. So repeating them at a different lab is also a good option.  

Last but not least, a biopsy of the butterfly rash can usually diagnose Lupus.  

Co
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HI there, I am a long timer in this fight (since 1993) and I am still finding out more, even after being SVR for several years now.  I have been on the Interferon FIVE  full courses (11 months each time because I had 1-b), with them adding the ribaviran  for the last three trx, and the Pegylated  INF for the last two. I relapsed within 6 weeks of cessation of trx, every single time and had given up hope. I was persuaded by a doctor at the U of MN to try one more time with Pegasys, in place of the Intron A, which was the only change in trx protocol, and I have been in remission ever since. I have never met anyone that has been on this treatment that many times and survived, so I think I am in the vanguard there, I have been involved in research trials early on, and made a few docs careers for them, but STILL no one listens to my complaints because here is the kicker ....  I thought I would feel better when the Hep was gone, but I also have nearly every symptom/damage that has been discussed in this thread and I feel worse than I ever did with the HCV! Granted, I know it saved me from possible future liver failure, but it also left me with a host of new problems and got me kicked off SS Disability, (which I fought long and hard for), because I am now "cured" on paper. Really? I could at least hold a job before the treatment, and now there is nothing that I can do even PT, that can sustain me financially that I am capable of and I have no disability for back up! I actually go tomorrow for yet another appeal hearing, with yet another panel of cold bastards that believe everything the Pharm co's spoon feed to them. To those of you being told you are crazy, that you need anti-depressants, or that you have a "Lupus-like" condition - You are definitely not alone!  There are simply permanent long term effects of trx that are not yet documented, because not only has there not been enough time elapsed to study the data on long term effects - the doctors and Pharms don't WANT to study the side effects because they will lose their big cash cow. A caveat here -  if you have moderate liver damage, you had better get your butt on SOME treatment pronto, because I have seen several people die wishing that they had done something sooner! Escalating HCV is deadly, make no mistake! Seeing that happen to friends is what kept me trying to treat that damned bug. But in my situation, I don't think it was the proper route at all (mild inflammation only on biopsies) and I wish that I had never done it. I likely had time to wait for some of the new treatments coming down the pike that may or may not have had the host of side effects that I was told were "temporary" and "would cease when I stopped the medication". Really? How long should that take? I have been off the drugs for five years now! And I feel worse than I ever did and now there is no clear cut reason, so no doctor will help me. No doctor wants to fight SS either, with their reams of "proof" that it has no long term side effects. Funny thing about that is, the "proof" was written by the same companies trying to get the drug approved to market and profit from. Can anyone say "conflict of interest"? And does anyone know a good lawyer, because I think there is a class action lawsuit just screaming to be filed here?
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So,... I understand exactly how you feel!  You probably are aware of that if you have been reading my posts and threads over recent years.  It really is a complete 'bummer' when you go through that first year or two, after getting the SVR, battling weird and nasty symptoms, all the while thinking....they are telling me it will all go away...just a few months...maybe a year...OK, maybe two years....well I am close to 10 years out, and like you, many of my post-tx, interferon generated sx are continuing to get worse.  Its not an optimistic scenario to be confronting!  I have gone from determined, to irritated, to now becoming downright angry about the long term outcome from the drugs, which like you, feels ten times worse than ANYTHING that I experienced prior to my tx'es.  Its one thing to get 'cured' of a possibly deadly disease....its another to come up with a set of conditions from the 'cure' that may be equally disabling, or even deadly at some point.  I wonder what these side effects will eventually lead to, since they seem to get more constant and severe every year.  It sure is a FAR cry from the general information provided during and after tx, that it all calms down in a few months...or maybe a year.  This tx has indeed created its own unique 'disease' process...and its not fun at all.  I can't even imagine what it has done to my brain, and nervous system....but it is not good things, I can assure you.

Please do keep involved on the forum...and let's see how this issue gets addressed by the medical community.  I think we should even form a sort of 'informal' survey of past tx'ers to try to get a rough idea of the percentages or numbers of problem cases out there.  Strength in numbers! Of course, I keep correcting typos as I write this, as always, my brain now works more like a dyslexic, with transposed letters constantly popping up.  I never used to have problems typing, or communicating....oh well, just another nice little souvenir!  

Good to hear from you.

How about all you LURKERS out there with similar stories....How about registering some comments about your own post-tx experiences.  I would like to hear from new and different posters.  This is an issue that just begs for input, and feedback!!!
Even if you did tx, and now have NO symptoms at all...great, let us hear that too.  I would like to see what the breakdown looks like on the forum.

DoubleDose
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And, just to reiterate my request in the post above:

How about all you LURKERS out there with similar stories....How about registering some comments about your own post-tx experiences.  I would like to hear from new and different posters.  This is an issue that just begs for input, and feedback!!!
Even if you did tx, and now have NO symptoms at all...great, let us hear that too.  I would like to see what the breakdown looks like on the forum.
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Here are a couple of posts that I copied from a forum related to Melanoma and treatment...they were on the topic of Interferon.  Does any of this sound familiar????

Here are the copied comments:

"djblank1 over year ago

this reply is mainly a question for gfmartin. I was diagnosed in 2007 for a stage IV melanoma that metastisized to my lymph nodes. I had the melanoma and the lymph nodes removed and did a year of the interferon. I still have a few of the side effect symptoms such as the bone and joint pains, the brain fuzzy feeling ( forget stuff easily ) headaches and dizzy spells. I have been off of the interferon for almost three years now and the doc's say that all of these symptoms are not from the interferon at this time frame, but cant tell me why I still have them. I was wondering if anyone else out there has side effects long after treatment?
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Guest Posts: 262246Joined: Aug 3, 2010
Guest 6 months ago

I was diagnosed with melanoma and had full lymph nodes removed.  Went thru 5 weeks of iv interferon followed by about 6 months self injection. Did not complete the full 12 months due to both personal and financial reasons.  Yes, I have had the same side effects (plus very bad fatigue) and got the same response from the doctors (although the first year they would tell me that it would take awhile for the interferon side effects to diminish). So i just dealt with it for 4 years after the end of treatment thinking that it was just something wrong with me... thought i needed to take vitamins, exercise, be more positive.. or maybe it was all in my head?  Two years ago I was diagnosed with chronic fatigue syndrome and fibromyalgia which doctor said was likely brought on by the interferon. It's been a very difficult road for the last six years. I get very frustrated when I read that doctors tell patients that symptoms aren't from the interferon.  There are many people that do have problems for a very long time and don't understand what is happening to them or how to deal with it. They really need acknowledgement and support from their doctor... not denial.  Hope you will get better soon. But if you don't or if it takes a long time, be kind yo yourself.. it isn't YOU.. it is the interferon. "



Interesting comments..........  DD



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Just FYI, here is what one of the HCV Treating medical centers says on its website about interferon and long term side effects!!!   I found this very interesting and wondered where THEY have gotten their information.  Apparently they must not treat anyone .  Here is the quote, and I will not post the name of the medical center.  



"Are there any long-term side effects to alfa-interferon?

The only long-term or permanent side effect reported from alfa-interferon is the worsening of thyroid disease."

Now THAT is just a real HOOT!  Really!!!  It does sound very authoritative though.....  I wonder if that's what they tell all their patients???

DoubleDose
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How many times are you going to post this same thing over and over Double Dose - a lot of people understand where you got your name from and realize just why interferon might not have been so kind to you.  Heck it wasn't very gentle with me but I understand why as I did it so hard for so long, certainly not for 24 weeks or something so I dont expect to have it as easy as others might have made out.

Good for them for moving on and being cured that is what I say.
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You are probably right!!!  I do need to get off the soapbox!!  I think I have said enough about after-effects...but I guess part of my motivation lately was the number of people posting about their long term issues, then I get caught up in the whole issue, and then there I go again!!  I knoe, enough said.  I also get baited sometimes by people saying the long term sx are from other causes...which drives me right up the wall...hence the comments from the Melanoma site....  I will take a Chill Pill....thanks for pointing out my overkill.............

Also, my recent flare up of sx may have motivated me to jump into the shark tank again.  I will just observe for awhile!!!  Too much energy typing these posts anyway..takes away from my time with my business.....

Happy Holidays!!!!!   DoubleDose, going keyboard-free.
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I am interested in news about long term side effects. I think it is a good thing to keep up the awareness too. I only treated for 14-weeks but it I am left with long-term side effects that are worse than the HCV. SOC/triple may well be better than a failing liver. I don't have a problem with that concept. But too many in the medical profession are still saying that there are no long-term side effects except, rarely, thyroid problems. This encourages more people to treat when they have little or no liver damage, treat for longer periods, and treat multiple times.

I specifically asked my gastroenterologist about permanent damage and he specifically assured me that there no long-term side effects bar thyroid, correctable vision impairment, and hair loss in men. He said thyroid wasn't a problem because you can test for it and stop treatment if necessary. I am not the only one who has had this sort of experience of being told there are no long-term side effects.

It is particularly important now that a cure with drugs which do not cause so much damage is so close. People need to be making their decision to treat based on complete information instead of false assurances that everything will be alright.

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I hear ya both. I had terrible time on IFN and got Lupus like illness and no cure. I would join the lawsuit. Let me know.
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yes the longest.... makes ya wonder.
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My sister died from melanoma and i was going thru tx about the time we got her into md anderson for tx. After i saw what they gave her, i had a hard time complaining. But i still felt awful after two weeks of the meds..
she was getting 100x the amount of INF/per dose more that what we take and all in about a 4 month period + other nasty mainline drips. Even had she survived, the drugs and radiation changed her radically. We did our tx together for a while until i got to where i could not drive. BTW it was my second time on Pega/Riba.
I had horrific sx to the tx and ended up in the ER a couple of times. I had so many probs and the doc kept telling me people were going to work and so on! That sure didn't help!!
I am not sure if the issues i am still having are post tx or hep c related since both times after being UND i relapsed. Talk about demoralizing, eh? I do know the tinnitus is from the meds and brain fog is my constant friend. I did notice that before i started tx though and they are now saying the the virus gets in teh brain etc, so who knows?
Someone on here does good spread sheets, maybe the post tx follow up would be a good project for us all to put some thought and energy into. I'd love some data to help put this in perspective.
I'd help if we do.
Jerialice
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"...and got me kicked off SS Disability, (which I fought long and hard for), because I am now "cured" on paper. Really? I could at least hold a job before the treatment, and now there is nothing that I can do even PT, that can sustain me financially that I am capable of and I have no disability for back up! I actually go tomorrow for yet another appeal hearing..."

I do wish you luck in your battles.

I was so very lucky to have found a team of docs in this small town who not only believed me, my complaints and where they would all stem from but also an assistant in filing for disability.

I made sure that we filed my disability as coming from treatment as I was "cured". The first judge wrote up the most absurd decision - with all my disabilities listed for why I couldnt work and then turning me down for disability. My assistant was just shocked by it all.

Then I became one of those 1%ers who had that decision from a judge overturned and seen by a second judge. WHAT A DIFFERENCE!!! He actually was human and seemed concerned. Even said something about "Good riddance" to the first judge (who had retired) ON TAPE!!!

If you can get yourself admitted to the MAYO I have heard that they label us as suffering from PIS (Post-Interferon Syndrome) and maybe that would help to get you back on disability.

Again,
Best of luck with it all
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i have fu like symtums3yrs ater treatment, does this ever end
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I'am really sorry i took this stuff my life has been a mess since. it seems as time gos on it just gets worst, i'am homless now, when i started that treatment i had a good job, money saved, i was gt1 stage2 on the liver, enzines were high, so, i was told to take this treatment, now, i hurt my shoulders when i came off the tx, i had 2 shoulder surgerys on my r-shoulder, the 2 surgery paralized my diaphram, now i have a lung on 1 side, i feel sick all the time head presser nasal- fu like symtums, for over a 1yr presser on the chest, nobody seems to find anything, i could think pretty fast add numbers in my head quick, now my brain is blank i don't know where to start or stop, does anyone ever come out of this in a positive light, why did i have to do so much damage to get reed of this hep c, and could i have waited ? frespirit57    
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"You are probably right!!!  I do need to get off the soapbox!!  I think I have said enough about after-effects...but I guess part of my motivation lately was the number of people posting about their long term issues, then I get caught up in the whole issue, and then there I go again!!   I will take a Chill Pill....thanks for pointing out my overkill.............

Also, my recent flare up of sx may have motivated me to jump into the shark tank again.  I will just observe for awhile!!!  Too much energy typing these posts anyway..takes away from my time with my business.....

Happy Holidays!!!!!   DoubleDose, going keyboard-free."

DD, apparently the Chill Pill you took isn't working.  Could you "Double the Dose"?    Seriously, you've been relentless in your agenda to point out the evil effects of interferon and your overkill of this sole agenda is overwhelming several threads.   As we try to be optimistic, you are trying to spread a message of fear and pessimism.  Your perception has unfortunately become your reality.  
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I just took the Double Chill Pill!!!!   I guess its the only thing that will get me to the desired SVR....Sustained Vocal Restraint!!!!!!!    Its WORKING.....

Now I think my keyboard is having withdrawal side effects!!!!  The keys are sticking and arthritic.  Must be Post-Posting syndrome..........

I just hope the sx are not long term........  

Time to enjoy the Holidays!!!!  

elbuoDesoD               I'm backin' outta' here...............

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Lol,  Happy holidays DD.  Best to you.
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I'm only somewhat sorry to bump this up.....again.  I often wish that a separate forum existed where this thread did not have to co-exist with people who are treating.

I read something that kind of triggered a comparison and thought that it might belong in this thread. It isn't *negative* information, but rather about the nature of information itself and how we perceive it.

Keep in mind that at one time Hep C was called non A- non B hepatitis.  It was known that it *existed*, but there were no tests for it.

The article was about the plausibility that could dogs could experience PTSD.  Here is the URL in Huffington Post;

http://www.huffingtonpost.com/david-katz-md/dogs-trauma-ptsd_b_1136608.html

"All too often, such individuals wind up encumbered with a "syndrome" -- the ignominious rubric applied when the full legitimacy of a "diagnosis" cannot be achieved. Often the distinction between syndrome and diagnosis resides in the application of diagnostic testing. If technology can show it's there, you can have a diagnosis. If we have to take your word for it, you are stuck with a syndrome -- which all too often means less respect, for you and your condition alike.

But of course, today's syndrome may well be tomorrow's diagnosis as the power and reach of diagnostic technology advance. It is no fault of a patient that he or she is burdened with a condition for which a diagnostic assay won't be available for another three years. But all too often, we act as if it were."

========================================
It's a worthwhile article and in some ways there are also ways in which these post TX sides have or could be related to PTSD.  The whole point is that thus far diagnosing is still not at hand.

best,
willy
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Here is a link to the symptoms for PTSD:

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/what-are-the-symptoms-of-ptsd.shtml

I think this covers only a very small slice of the range of symptoms that comprise the post-interferon syndrome.  There may be some PTSD simultaneously going on in post-tx'ers, but it should really be just as prevalent in pre-tx'ers....since things like 'being informed of a potential life threatening illness' are on the trigger list.  This post-tx syndrome uniquely seems to hit right after ending tx.  I think the post-inf. syndrome displays far too many physiological changes and abberations, as well as metabolic changes, to attribute it to PTSD.  They may both act together though, and compound the effect of one and other!

DoubleDose

PS  (They let me have my keyboard back for 5 minutes today....on my posting-detox program.  Its only so I don't lapse into acute withdrawal from post-posting syndrome.)  
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I'm so sorry for your suffering.  I know it is lonely and hard and I will pray for you.
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Hey people... Just been reading this thread as part of my research into the reported long term negative effects of IFN/Riba Tx.

I'm a geno 2 ...
low baseline viral load 230909...
Bx showed Ishak F4 fibrosis

RVR at week 4 and now almost at week 12.

So ... knowing that it's possible for me to shorten from 24 to 16 weeks and the difference in SVR is 90% and 82% respectively... should I consider the damage potential of IFN/Riba doing the full 24 weeks...?

It's a tough one... both SVR rates are good regardless of the 8% difference ... so is it better to go the extra 8 weeks and risk any potential damage the drugs could do.... or stop at 16 weeks  and run that 8% extra risk of relapse and have to re-treat.

I would be interested to hear from anyone who is experiencing post Tx problems that they are confident can be attributed to the P/R drugs and have them report their 4 main monitored Blood numbers over Tx.... especially WBC and Neuts.

I'd like to see if there is any possible correlation between low level immune numbers during Tx and Post Tx problems as a potential indicator of how our individual systems tolerate IFN/Riba.

I've taken no hit at all with all numbers still in normal range.after 10 weeks of Tx... except for Plates... but they started low at 145 tho haven't gone below 82

Thanks

BlackJack
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Forgive my error in navigating how to post.... I meant to address the previous to everyone ... not just the OP of the thread

**
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Hey **, first I'd suggest you post this as a new thread if you don't get many responses.  Although related, your asking a specific question that may get overlooked.  There might be study data available, and if so, someone will post it.  

Regarding the shortening of trt from 24 to 16 weeks, considering you appear to be tolerating trt very well, why would you want to risk SVR for just 8 weeks longer?  Many have done 48-72 weeks and longer, so I doubt you'll find much support here for such a short trt with no data or studies to back it up.   Are you a medical researcher, or a layman like us that likes to delve into these issues?  
Shortening trt and cooking the numbers is risky business, considering you only want to do this once - kinda like jumping off a cliff without a parachute.  :o))
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I don't think F4 fibrosis makes you a good candidate to reduce tx time whatever your CBC #s might be.
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I agree with desrt.  F4 and lower than normal platelets point to more advanced fibrosis.  So shortening tx would not be a good idea.

Co
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Hi champ...

Definitely just a member of the human race with HCV who likes to delve into the issues... and jumps off cliffs with the canopy on his back... lol

I already chose to do the full 24 weeks before I started.... for me it's a no brainer

But I'm interested to try and understand where the consideration of any long term effects might influence the tough decision that people make in relation to shortening..

Up until now I hadn't even considered the possibility of any long term problems associated with P/R Tx.

So just in an effort to get some perspective I'm wondering if in fact the people who report post Tx problems are possibly suffering as a result of an undiagnosed underlying condition....?

Or in fact could they have suffered irreversible damage due to long term exposure to the virus itself and although they achieve SVR and the virus is dead has it in fact caused them these long lasting problems...?

Are there any study data anyone can point me to in relation to this subject please...?

Cheers

BlackJack

( I think the language control picks up on a shortening of my username on this forum.... lol )
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In the medical world when we take care of patients we are told, "If you didn't  write it, then it never happened".

It's worse for you.  If you don't talk about post tx sides it will be as if they never happened....and if you talk about them then you become an inconvenient truth.

I say go for it.  Give those that were left with side effects a voice.

Co
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1% to 5% of those with Hep c will die of it, per CDC fact sheet here: http://www.cdc.gov/hepatitis/HCV/PatientEduHCV.htm.

It stuns me that some of their literature talks about the dangers of herbal therapies and does not mention any bad side effects of interferon.  Appalling.  

An aside -- so for those who die, how many do you think use drugs, drink, etc?  To put it another way, what if you took really good care of yourself?  What would your odds be?

_________________________________________________

so compare those CDC numbers to these side effects percentages:

http://www.drugs.com/sfx/interferon-alfa-2b-side-effects.html

_________________________________________________

“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.

NYT, 21 Jul 2010, "Hope Against Hepatitis C"

http://www.nytimes.com/2010/07/22/business/22hepatitis.html?pagewanted=all

_____________________________________________________

google "recovery hepatitis c treatment max hopwood national center in HIV social research" -- this is really important.

_______________________________________________

Read all the other related forums in this medhelp place.  

_________________________________________________

From my own personal experience and that of others (I think) - bad side effects happen AFTER cessation of treatment and can be forever.  You will not be warned of this.

To repeat, you will not acquire adequate warning of:

1) side effects that arise after you quit treatment;

2)  the longevity of side effects.  

______________________________________________
Pharmaceutical companies understate dangers, see eg:

http://www.pharmcast.com/WarningLetters/Yr2006/Mar2006/InterMune0306.htm

http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/WarningLettersandNoticeofViolationLetterstoPharmaceuticalCompanies/ucm259249.htm

______________________________________________


If you talk to your doctor about the side effects listed in members of this forum and he /she discounts them, run.  You will likely be vulnerabel and defenseless during treatment.  You need a doctor who is watching out for you.  

________________________________________________

If you want to get really disgusted, go check out Roche's 2011 half year report filed with SEC and track down the part where they talk about marketing Hep C / interferon.  my memory says page 16, but i could be wrong.  

________________________________________


Unless and until doctors acknowledge the dangers of Interferon combo therapy, truly acknowledge, I wouldn't go anywhere near it.  It is hard for you to imagine the way it can be.  It can be very bad.  
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WOW!!!!  Thanks for the above links regarding Federal Agency warnings to the Interferon makers, and marketers.  I did not realize these warnings had been issued, and I was also unaware that the Fed agencies were aware of the under-stating of the risks associated with Interferon therapy.  This is a reall wake -up call to all of us who suffer from debilitating long term problems....and may be the foundation for even taking some sort of action.
There seems to have been more going on behind the scenes than anyone ever realized.  No wonder the Interferon makers don't do any long term follow up studies.  I am sure they are well aware of the potential results.  Its gut wrenching stuff, when you read these agency warnings.  Sure brings it all right back home, and puts the focus on the real problem.  We need to keep this dialogue very open and public...if only because so few are probably aware of any of these warnings.  

DoubleDose
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Interesting information both yay and nay.  It's terrible to read about such stories about interferon ruining peoples lives.  I wonder if cancer patients end up with the same or is it the combination of Ribavarin and Interferon?  I'll have to finish reading later when I get home.  
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No I really don't think the Ribavirin has a long term systemic or immune modulatory effect like Interferon.  The Riba can cause lots of present-time problems, with anemia, etc...but once discontinued I don't think there is any evidence of other longer term effects.  Interferon on the other hand, is a very, very powerful drug that really changes the way the entire immune system functions, and operates on so many different systems within our body.  And, yes Cancer patients have their own horror stories about the after-effects of Interferon alone as a treatment drug.  I posted a link to a Cancer-Interferon support group a month or two ago.  Sounded like all the same problems to me.  

DoubleDose
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Thanks again for the links!  EVERYONE out there should open the link you included, on the Study regarding Recovery from HCV Treatments".  Especially pages 14-25.    This is probably one of the only carefully done, comprehensive studies on what happens and how patients perceive what happens, AFTER treatment ends.  It is a very informative piece.

Here is the link again, to all who are interested in what this study concludes:


http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf


Well worth the time to download and read!!!

DoubleDose
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I finished 13 month Peg/Interferon treatment in 2003.
After 1 month and a half my virus was undetected. For the first 2 years after finishing the treatment my white cell and red cells were always lower than normal, but my doctor was never too worry about it.
Now I am just fine. I get tested once a year and  sometimes I even forget  what I went thru.
The treatment was not easy, but I strongly encourage everyone to do it.
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Doubledose,... I am one of those lukers and have been for over 6 years.  Was dx w/HCV March 2005.   I am a Geno 1a, stage 3/3 completed 48 weeks of tx starting 01/2006 and finished tx 12/20/2006.  Happy to say I am UND.  TX was pegasys/riba of which tx was extremely hard, had numeours sx.  Was unable to work, brain fog.  HCB was in mid-high 7 starting in week 3, procrit twice a week. Numerous rescue drugs  Skin problems, rashes to the point where they considered stopping tx around week 42

The fatigue is worse now than it was prior to tx, depression, aches and pains, still can not sleep more 5 hr increments. No motivation and the stamina is all but gone.  The weight gain, and yes the poor food choices, foods that I never cared about before are appealing.  All of which my dr's have an explanation for, none point to post treatment effects. Many give me reasons that are hormonal, which I keep telling them I just know that is not the case here.  It has been extremely frustrating... so, when I read these comments, it at least lets me know, these post tx problems are real and not just me.  Dr have tried to mask problem with drugs, which I refuse to do.  Or one actually said, well.. you have expected some left over effects as these drugs are experimental.  Which was about as honest of an aswer I've gotten to date.

Would I do tx again knowing what I know now!  Most likely I would have, as I have/had children still in school.  I know, my youngest son will be forever be changed by that year long ordeal.

Well, this is my rant.



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Thanks for your comments.  It sure sounds like you have the 'typical' post-tx pattern of complaints in line with most of those who end up with long-term after effects.  The doctors really do seem clueless, and it can be very frustrating trying to get them to understand just what has happened to you as a result of the tx.  A few, like the one who was candid with you, will admit that very little is really known about what the drugs can do over the longterm, and that its all very experimental....others just don't really know, or maybe they don't want to know about what this tx does to some of us.  I think many just totally rely on what their drug reps tell them, and they think we must be either imagining things, or that we have some other 'unknown' illness.  The problem is, all of us get the 'same' sort of illness after tx....The symptoms, and patterns are pretty uniform and consistent for those of us so affected.  I remain completely amazed, dumbfounded, and mortified at the total lack of desire in the medical community to document any of this, or to run any longitudinal studies after tx ends, to really determine empirically and scientifically what the real numbers are, who has problems, what sort, how long do they last, what are the percentages, etc., etc.   I cannot imagine a less forthright or ethical approach to dispensing therapy.  

I hope you find some ways to overcome and manage your post-tx issues.  There are few, if any, answers out there.  We need to continue making our problems known to the medical and HCV community, so that at some point someone will pick up the ball and get some research going.  I am sure there are class action litigators out there that would make shark bait out of some of the parties involved if they thought they had a large enough, and determined enough adversely affected group ready to take action.  

Keep in touch with the members here, and let the forum be a place where you can not only vent, but find allies, and information.  Good luck!!

DoubleDose.  
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To DoubleDose, Kitykat64 and All:
I have never treated.  I was supposed to go on a trial last Thursday but I cancelled it after doing "research" on how my life would change during and post treatment.  My first ever biopsy done recently showed I am stage 2/3.  I am 63 years old and have been HepC for 47 years.  I thought it was 35 - but I believe I was infected at 26.  All these years I've been told you have HepC and your liver enzymes are high - they ranged from 45 to even once to 325 and recently to 120 - went down - don't know why (have to look up which one is the ast/alt.).  The Dr. told me - "I think I will be out of a job soon".  "There are minimal side affects now"...... - and of course he did not mention what conditions I may develop post treatment.

Up until now I've been "healthy".  I work, I am very active.  To think that with certainty my quality of life would change for the worst - at least for the moment - taking meds does not seem like a good choice - at least for now.   I've been lucky - none of us know how much longer I will be lucky.  For sure, it would appear that going into tx would required some long term planning because this will change your life.  Suppose the side affects prevent me from working like so many before me.  Some people have been lucky with treatment - this is great. I am happy for them.

I don't know what I will ultimately do - but I do know that the side affects of the "cure" for me at this time is not worth it.

Thank you DoubleDose _ I truly enjoy your post.  And though its ultimately my decision alone - the information you have provided is invaluable.  

Thank you all so much and Happy Holidays.

Millie

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I just read your post as I sit here and fight and suffer from interefron-induced lability / brain fog again.  I truly believe if you keep your weight down, eat green leafy vegetables, low inflamation (inflammation) diet, moderate exercise, etc, you have much better odds for a happy healthy life w/o interferon than with.  

God bless you and good luck and Merry Christmas.
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I go to sleep every night and wake up every morning regretting my decision to do interferon.  I never considered a legal drug could do something so devastating. The one warning I read on the internet prior to treatment was trying to sell something and I thought it was a scam. I guess it wasn't.

My sister has MS. For years she was on a iterferon therapy. She stopped that due to the sides. She has many issues now which we don't know if they are from the MS or Interferon. Even though they are on a different dose and possibly a different type wouldn't some of those MS patient who have doing interferon for years have similar sides?
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The doctor told me everyone has side effects. He wasn't lying.
I am in week 8 of the triple treat with incivek and have had a lot of SX.
If I had it to do over again knowing what I know now I would have waited for the non interferon drugs.
Fiarreah, itching, brain fog, lymph node inflammation ect...
I was UND at week 4 but this is a tough trip and I was healthy before I started.
I do understand though that for most the SX go away after treatment has stopped.
Feb4
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this is the 4th treatment i've undertaken since 1992(?). all side affects have been short lived with me and didnt continue very long after treatment stopped. we'll see what this treatment brings, shortterm its already affecting me, as for long term........
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thank you for your prayes, you seem to be the only one that gets it, the rest thinks there on this wonderful mission and for jan31st, what is this your first sales job ? frespirit57
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It is good to hear from people with no side effects. This forum has to be skewed toward those with side effects, myself included.  "No side effect" people don't come looking for this.  Of course, I also believe a lot of side effects people have committed suicide.   I do not say that lightly. I base it on my own lifetime of experience overcoming various difficult times in my life and never thinking of suicide, vs thinking about it over and over and over post-interefron.

I wish there was an objective third party study that compared long term side effects to long term gain.  I no longer believe it is prudent to trust any research sponsored by pharmaceutical companies.  One is naive to do so.

Brain fog - mine has cleared somewhat.  When you are in the fog, you may not realize what has happened to you.  

It occurred to me recently that I had lost was the ability to picture things in my mind.  I used to be able to close my eyes and conjure up a picture of words on a page, of a scene, etc.  I cannot do that any longer.

I cannot look at a project and picture the steps that need to be done, one-two-three.  I used to be so, so skilled at that.  

I underwent reiki yesterday with a purportedly skilled person.  For the first time in a long time, I almost pictured something in my brain, a street sign, a vague fuzzy outline of it in my head.  I cannoit tell you how significant of an event that was for me, emotionally as well as raisng my spirits.  Perhaps my brain will mostly heal.  I am three years post-cessation of six months riba-interferon therapy.

I have been praying and trying to direct my energy to my arthritic joints to calm down, to my brain to reset.  I  think it helps.  Deep breaths in, pushing good energy out on the exhale from my heart / lung core to the place that needs healing, saying in my mind and imagining  what needs to happen (ie "joint calm down, brain reset,  interferon out of my body, rest, stop attacking, calm, peace").

"Just for today, I will not be angry.
I will not worry and be filled with gratitude.
I will devote myself to my work and be kind to people."

......

I also went on Wellbutrin recently.  I had to do something for the lability, the extreme mood shifts (never experienced these before interefron).  I think it may be helping, I don't know.  I took it years ago when trying to quit smoking.  

The doctor tried to give me Paxil.  He didn't discuss the effects of Paxil with me.  Just wrote the prescription and said take it.  I picked up the prescription and then read the side effects (as well as MedHelp forum, which I so wish I had done before taking interferon).  Jesus Christ.  I'm not taking Paxil!  

The doctors are crazy and reckless and just so bizarrely skewed to this "better living through chemistry" mindset.  Western medicine has just completely run off the rails.  

We as a society of patients with our expectations of "fix all cure all, no matter what we do to ourselves and no matter how little effort we are willing to put into taking care of ourselves" are significantly to blame.  I suspect t hat is the way medicine has been marketed to us.  

When you think about it, our current medicine system would just about crumble if everybody started exercising and eating right and sleeping well and doing spiritual work.  Who would buy all the antidepressants and Lipitor and what would all the heart surgeons and shunt manufacturers do?  Ha!

There is a lot we can do, A LOT!, without resorting to profit-driven Big Pharma.

I say "pooh on them!"    

:-)
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With a few exceptions, just about every doc I have ever had has minimized side effects and/or recovery time from various procedures or meds.  I guess they are trying to maintain an upbeat attitude.  But usually I schedule more off work time after surgery eg as I take this tendency to minimize into consideration.  
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I disagree that these forums are skewed towards postings by those with side effects. Maybe slightly, but not so much as many think.
The fact that Reiki, acupuncture, reflexology, massage, and so forth get a bad rap because many practitioners tout them as a cureall, doesn't negate the fact that most manipulative therapies have been shown to release endorphins, serotonin, and other feel good stuff into our systems. Maybe not a huge thing for someone with huge health issues (other than symptomatic relief) but perhaps for the 'mental image' type issues that might crop up post IFN tx, a good thing.
Good call on the Paxil. I know there are some on this forum who swear by it, but after watching two friends detox from it, I was scared away from all SSRIs. Not a good thing, as I probably could have benefitted from a little Prozac while on tx;-)
Take care.
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I had interferon and ribaviron tx 1999, had to stop after 12 weeks as I couldn't physically manage my job and kids, needed the money more, I had the side effects flu like symptoms, low bloods and some of my hair fell out, however, I tested undectable ever since and am 'cured' but I since treatment I developed gastric antibodies and now perncious anaemia (autoimmune problem) I have to say that my tiredness has never really gone away and the brain fog came back with avengance when my B12 got really low, has anyone else developed autoimmune probs post tx? My red blood cells have never recovered either and are always low, would be interested in what everyone has to say.
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Chanchi:

I'm sorry to hear of your difficulties.  Yeah, a lot of us have autoimmune problems.
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OK, I'll throw in my story. I have Geno type 1A. Found out in 2004. I had  to get my gallbladder removed and a few other family details to get in order before tx. I also tried alternative therapies for 6 months.

I lasted 18 weeks on Pegalated/Ribavirin. I responded immediately in terms of viral load but the side effects were excruciating. I almost lost my sight in my right eye, I was completely suicidal (never had a thought about it in my life) the first night. They threw Lexapro into the fray and that helped a great deal with those thoughts. I should have stated that I was already on SSDD for Fibromyalgia and I also had had a brief history with Reflex Sympathetic Dystrophy. Fast forward to my final day on Interferon --- straight to the hospital as an impatient showing symptoms of a full blown MS case. I could not control any muscles in my body and the spasms/pain were unbearable. I was put on IV Ativan for 24 hrs when the spasms finally calmed down...or so I thought.

I have not been the same since. I have no immune system anyway and this just make it worse.And I am the younger thin woman using the handicap carts in the stores.  I am bed bound at least 3 days a week and sometimes more.

I was hit head on in my car three years ago and I am worse now than then. I believe and of course cannot prove that tx has permanently screwed up my brain chemistry. The day I was taken off of tx I was told that if I had mentioned the RSD they never would have put me on tx. Well it had only affected me for 6 days  in 1994 and a month in 2000. It sure wasn't on the questionairre. So they blame me for not mentioning it.

Every day is a challenge. i wish I had never gone on treatment. I'll take quality over quantity of life any day.
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I agree with you that some litigation class action law firm would jump on this. I will start asking around
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Keep it up Double Dose inform people of the side effects. Great if they do not have any but they should know of the possibility of getting them. I was diagnosed in 1987 with non A non B and have lived with for 25 years. Had the Peg interferon and Riboviron in 2007 for 48 weeks and have not been the same since. Brain fog joint and muscle pain and trouble sleeping at night. Now fighting with my Dr's to continue my disability insurance. Continue to have elevated liver enzymes but virus free. Wish I would of never done the treatment.
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I feel the same way , sorry i ever took the treatment, pegintron and ribavarin 48 weeks , i cleared after 4 wks, after treatment is when i had all the trouble, i still having trouble with chocking feeling, breathing is bad, when i came off treatment, went in to a big depression, lost 35 pds in 30 days, the va hospital locked me up for 2 days in mental ward, never been there before, don't want to go back,  now the doctors don't know whats wrong nor care, the reason why i took the treatment was because my enzymes were high, i seen 2 dr, there were going on how this was real bad , i should of seen a 3rd dr, i think i would of been better off keeping the hep c , i'am homeless now, i had a good job, money saved, my life is over. frespirit57  
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As to cognitive impairment from Interferon / ribavirin therapy, some Polish psychiatrists have studied it.  

http://www.ncbi.nlm.nih.gov/pubmed/19441669

The FDA must require an objective study and assessment on the long term side effects of interferon therapy.  
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There is nothing on Roche's warning page about cognitive impairment, as of 18 Jan 2012.  

http://www.pegasys.com/patient/for-patients/pegassist-support/index.html


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Thank you for the article on Cognitive problems, interesting.  I am on week 20 or 21 depending on who I ask LOL
My memory is not very good so I may be wrong, isn't there something in the Peg or riba proscribing information discussing neuro psychiatric sx? or anxiety?..depression?    I thought there was something however the doctor did not talk about it, he said "flu like symptoms" which I would get used to in 6 to 8 weeks.  With the advent of the triple therapy they need to change their line regarding flu like symptoms.  Also saying it is "doable or manageable" should be looked at. While I worked during Peg/Riba in 2008, I would not have been able to do with Incivek Triple Therapy now.  I have heard of some who can and are and my hats off to them.   Luckily the PA in my doctors office told me that the Peg would make me very anxious and advised starting anti depressants which was a great idea.
Best wishes to all.  I love this forum and the people on it
Dee
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"The FDA must require an objective study and assessment on the long term side effects of interferon therapy. "


I am in full agreement!!!!
.

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Iam new here to this forum if thats the right word. i have been researching the long term side effects of pegasys tx. now for six months as my husband has become worse over the last year it seems whatever is going on is coming on with a vengence it cannot be a coincidence the symptoms are all to familar we go for a bone marrow test early next week did the bone density test it was abnormal which i had a feeling it would be we will also be doing another liver biopsy at the first of the month i  have put so much information in front of all the doctors that they have no choice but to listen to me they seem oblivious to all of it the severe almost crippling joint and muscle pain the memory loss i cant stand to watch my husband suffer any more the facts are the facts i wont go down without a fight for my husband who is suffering from P.I.S. i felt like i finally needed to speak out on this horribe condition that is taking over our lives i will fight untill iam heard i promise all of you that sincerely . karla
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Unfortunately, the doctors themselves need to become educated about post-interferon-syndrome.  Most are still listening to the pharmaceutical reps about after-effects!   If they only tried listening to their patients!!!  

DoubleDose
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Hi my husband is on treatment for the second time, first time was pegintron/ribavirin and was really bad, he had no response and was taken off after 8 weeks. He ended up in a mental hospital and had 2 phycotic episodes, that were out of nowhere. after treatment ceased he got back to normal with a few side effects. His liver has deteriorated rapidly so was advised to go on triple treatment (interferon/ribavirin and boceprevir) as he qualified with having chirossis. He is into week 9 and gone back to deep depression bad pain and not sleeping at nights. He can no longer work and is getting worse by the day. We find out in 3 weeks if this poisen is working, but in the mean time I have to watch my husband go through hell and me and the kids need to watch everything we say around him, so we dont have any reapeat episodes. Reading above posts about side effects staying is an eye opener, because I thought cure or no cure he would come back?
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Sorry to hear your husband is having so many side effects. Hopefully we can be of some help.

This an old thread and a lot of people don't read an old thread. You will get better feedback if you start a new thread. Go to near the top of the page and click on the orange rectangle which says Post A Question and repost. You will get more responses.
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After three years and 500+ postings, the fact that this thread still gets added to, shows that it still gets read. Unfortunately the length of the thread means that, perhaps, the whole thing doesn't get read. Somewhere, in the middle of the second page right now, for instance, I made some positive suggestions on dealing with cognitive impairment, and I know I sometimes sound like a broken record on the subject of CoQ10 and CerefolinNAC.
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I agree that this thread does get read (by some) and added to. I never said the thread never got read. My point is that it is an old thread and a lot of people do not read an old thread. My point is that she will probably get better feedback from more people if she starts a new thread. It is a suggestion.  

I don't know why my suggestion to her matters to you. I am just trying to be helpful to her by making the suggestion in order to let her know she may get more feedback by starting a new thread. I see many other well respected and knowledgeable forum members posting this very same suggestion when new people post in older threads. I have never seen anyone else objecting to their suggestions.
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hi there, i created an account just to contact you! although your feed is old i managed to come across it when looking up interferon symptoms for my friend with hep c that just recently started treatment. My name is Laraine and i am 20 years old and a college student but i have researched vitamin d extensively. about 2 years ago i was suffering from similar symptoms as the side effects as do interferon patients such as fatigue, depression, intense bone and muscle pain for no reason (i was not receiving interferon or any other treatment drugs). after seeing the rheumotologist, he had checked my vitamin d levels because low vitamin d levels can have pleitrophic effects (effects on the whole body) ranging from immune-disorders, bone loss, depression, digestive disease, fatigue, hormonal imbalance and extreme pain. more recently, i have become obsessed with vitamin d after discovering how much it had improved my life (i take 5000 units daily, sometimes 10000) that it can prevent 60% of cancers. i was concerned about my friend whom i mentioned has just started interferon and found many articles that vitamin d can aid in the interferon treatment tremendously, please try this!!! have your levels checked; its a simple blood test (levels should be around 40-50ng) and this can increase the treatment success drastically as research is showing although in its infancy. low vitamin d levels (which 3/4 of the population has) can cause adverse effects when being treated with interferon. with healthy levels, the virus is much more likely to be suppressed. if need be, research this for yourself because as an undergraduate student, my advice may not seem credible. i will also send you peer reviewed articles on this topic if warranted. i sincerely hope this can help your husband. questions or comments, contact me :)
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Thank you for the info, i'am ready to move on, i have been so angry about taking this drug [pegintron/riba]  and the medical field. Frespirit57
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I have ben on HCV  type 2 treatment Peg/ riv for 8 weeks and after the 4 week it was undetecable at first my doctor said my levels were very low 180,000 and maybe do 12 week treatment. Dr. now says do the 24 week to make sure. Why? My side affects are bad on days and I wish I had my mind back. I want to stop after 12 weeks. Has anyone else stopped early after beening cleared only after 4 weeks. I will finish 12 weeks but what do u think? I know it would be better to stop early because of the long term affects of the bad treatment but I don't want for it to come back. Any body in the same boat....is 12 week enough? Sandra
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If you mean by "HCV  type 2" that you have genotype 2, there are actual studies on this and your post could probably be answered better in a new thread.

pooh55811
The difference between sandra1021 and distressed42 is that sandra has a question that might reasonaby be answered with documented studies our members have acess to. Distressed's husband's doctor is going way off label in Rxing IFN to someone who has shown extreme reactions of the type she describes in the past. She can repost her question, and perhaps get a lot of well meaning 'advice', but the reality is no one at MedHelp is truly qualified to give her an answer. Personally, I feel her doctor is in way over his head ignoring the first and most prominent of the black box warnings. But he might have good reaons.
Also, distressed's post was addressed to a specific member regarding material in the above thread.
No hard feelings. I feel anyone can post whatever they want here. Just my observations.
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There are studies which say type 2 may stop earlier. Read those and decide. I  had type 2 with virus loads about 7,000,000 before tx. At week 12 they had to reduce my interferon to 50% due to retinal bleeding. If I knew then what I know now I would have stopped then. Actually if I knew then what I know now I wouldn’t of done tx at all.
I’m virus free but paying for it BIG TIME. I can only speak for me but if I were you I would stop. It is poison.
The drug rep for Pegasys and my doctor at UCLA says " They have never heard of ANYONE with these side effects"
Can I ever believe them?
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Sandy, if you do quit the therapy at 12 weeks and the virus should somehow not be gone, perhaps you can wait until 2015 to treat with a more benign drug or combo of drugs.

http://www.hepmag.com/articles/psi7977_svr_hcv_2501_21405.shtml
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I AM STILL SCREWED UP FR INTERFERON WOULD RATHER NOT DONE THE TREATMENT
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I have completed my treatment and have tsted neg for Hep C for 10 years.I feel great and have no liver damage. You can choose to trust a handful of people with negative comments to scare you, or you can do as I did, and continue to do in everything in my life....TRUST IN GOD
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That's great!

I'm not sure it means that the benefits to those 2 or 3 out of 100 people saved by interferon is not outweighed by the damage it does (ie - 1 in 5 thyroids fried, %? w/ lasting arthritis, % w/ lasting psoriasis, %? w/ lasting brain fog, %? who commit suicide).  

If one believes that the research (such as that cited by the UCLA doc and the Pegasys rep) has not been skewed by BigPharma's money, one is naive.

At least the FDA is finally requiring drug companies to report payments to doctors.    
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http://www.ncbi.nlm.nih.gov/pubmed/19441669

Abstract of study from Poland re: cognitive impairments arising from interferon.
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Please show where you got the statistics of 2-3 people out of 100.

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That is during treatment, that is also on the info pamphlet for Peg, so no new news there, but you are talking about post treatment, aren't you?  Is there a study that you have seen on that?
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No.  Only calls for them from a few members of the medical community, and anecdotes on MedHelp  of some physicians requiring congnitive assessment  before treatment.  
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2 or 3 out of 100?  No,please dont report things that certainly are NOT true and are NOT educated intelligent statistics for which you know nothing about. With the new drugs and a 75-80% cure rate for even geno 1, 2 and 3 - can you do the math? How many out of 100 people would that mean were / will be cured?

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and who said one in 5 thyroids 'fried'?  Where on earth do you get this BS from?
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J Hepatol. 2011 Oct 23. [Epub ahead of print]

Effects of anti-viral therapy and HCV clearance on cerebral metabolism and cognition.


Department of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, United States.

Chronic hepatitis C virus (HCV) infection is associated with altered cerebral metabolism and cognitive dysfunction. We aimed to evaluate the effect of pegylated interferon/ribavirin (PIFN/R) and HCV clearance on cerebral metabolism, and neuropsychological performance.
METHODS:

Fifteen non-cirrhotic HCV positive subjects underwent (1)H MR spectroscopy (MRS) before, during, and after treatment with PIFN/R. The metabolites of interest namely, N-acetylaspartate (NAA), choline (Cho), myo-inositol (MI), and the control metabolite creatine (Cr), were acquired from 3 different brain regions; left basal ganglia, left frontal cortex, and left dorso-lateral pre-frontal cortex. Coinciding with this, subjects also underwent a battery of neuropsychological tests to evaluate the domains of verbal learning, memory, attention, language, executive functioning, and motor skills. Seven HCV positive controls (not receiving anti-viral therapy) underwent MRS and neuropsychological testing at two time points, 12weeks apart, to examine for variation in cerebral metabolites over time and the practice effect of repeat neuropsychological testing.
RESULTS:

Significant reductions in basal ganglia Cho/Cr (p=0.03) and basal ganglia MI/Cr (p=0.03) were observed in sustained virological responders (SVRs, n=8), but not non-responders/relapsers (NR/R, n=6), indicative of reduced cerebral infection and/or immune activation in those who cleared virus. SVRs demonstrated significant improvements in verbal learning, memory, and visuo-spatial memory. A small but significant improvement in neurocognitive function secondary to the practice effect was seen in both HCV controls and HCV subjects during treatment.
CONCLUSIONS:

HCV eradication has a beneficial effect on cerebral metabolism and selective aspects of neurocognitive function and is an important factor when contemplating anti-viral therapy in HCV, especially in those with mild disease.

http://www.ncbi.nlm.nih.gov/pubmed/22027578.
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Orphanedhawk kindly asked   4 days ago  to please post where you got the stats for  2 -3 % of HCV therapy patients  were SVR?

As well as posting the clinical studies on that ,could you please post the studies that show  " 1 in 5 thyroids fried"  and also all the studiy data on  % of suicides from INF. therapy.
Thx.

Will


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That arises from CDC's "Information for Physicians," which states that 1% to 5% of people who have Hep C will die from it.  

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm

So as we have a cure rate of 50% to 70%, I guesstimate (validly, if CDC is correct) that treatment saves only 2 or 3 out of 100, at best.  

20 of the 100 will devbelop thyroid disease, I think, based on the recent drug insert warnings.  

Who knows how many of the 100 will suffer permanent or long lasting brain fog / brain injury, psoriasis, arthritis, and other autoimmune disorders?  That is the million dollar question that the FDA has not required BigPharma to answer.  
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You know, I spoke with the help nurse at Roche last week and cited my 50% to 70% figure to her, and sher said, "That's right, depending on genotype."
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163305_tn?1333672171
If a cure rate is 50-70% than 50-75 people out of 100 are cured. Simple.

I was told being genotype 2, the cure rate was 80%.
Meaning 80 out of 100 people are cured.

Math isn't my best subject but this is simple.
Please don't scare people with such huge inaccuracies.
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Thank you for the 1 link...

Here is a more up to date one.  I personally  always had slightly more confidence in Medscape than the Gov"t sites.

Best..
Will

http://emedicine.medscape.com/article/1134161-overview#a0199


Cirrhosis develops in 20-50% of patients with chronic hepatitis C infection. Liver failure and hepatocellular carcinoma can eventually result. Hepatocellular carcinoma occurred in 11-19% of patients. The risk of cirrhosis and hepatocellular carcinoma doubles in patients who have undergone transfusion.[6]

Two studies of compensated cirrhosis in the United States and Europe showed that decompensation occurred in 20% of patients and that hepatocellular carcinoma occurred in approximately 10% of patients.[7, 8] The survival rate at 5 and 10 years was 89% and 79%, respectively. The onset of chronic hepatitis C infection early in life often leads to less serious consequences.[9, 10] Hepatitis B virus (HBV) infection, iron overload, and alpha 1-antitrypsin deficiency may play a role in the progression of chronic hepatitis C infection to HCV-related cirrhosis.[11, 12]

Chronic hepatitis C infection and its major sequelae (cirrhosis and hepatoma) are responsible for 8,000-10,000 deaths a year.

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I am sorry, I still don't get your math....

so 1% to 5% will die from Hep c...that means 1-5 out of 100 people will die from Hep C...

50%-70% will be cured with treatment...that means 50-70 out of 100 people will be cured with treatment.

Are you talking about the 1-5% that will die from Hep C?  so if there is a group of 100 people that will die from Hep C, you are saying that treatment will only save a few of those?  which i still don't get the math if that's the case, but maybe it's just over my head....
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95 out of 100 would never have died from the disease and probably didn't need treatment anyway.  2 or 3 at worse out of 100 would have died from the disease after failed treatment.  2 or 3 who would have died were saved.

Why expose the 95 out of 100 to terrible side effects?

“I think the companies have done a superb job of marketing this disease,” said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.

http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107#post_comment



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Avatar_m_tn
You know, I spoke with the help nurse at Roche last week and cited my 50% to 70% figure to her, and sher said, "That's right, depending on genotype."
---------------------------------------------------------------

Again..I like Medscape.. Pubmed and Clinical Care Options  for siting data personally...  
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If you treat with triple therapy a geno1 has a 75% - 80% chance of success rate. That simply means 75 or 80 out of 100. And geno 2 and 3 have always been about 80% cure rate that again means 80 out of 100 people.

Will, I guess they dont figure HCC or Decompenstaed Cirrhosis to be as bad as any possible lingering of interferon (including the fried green thyroids that is).

Hawk my math is TERRIBLE but even I can manage to do this equation ;)

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Avatar_f_tn
i would think that the 1-5% that will die from Hep C would be a much higher number if they didn't treat...I think the stats are with people treating or trying to treat...
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Avatar_m_tn
Interesting....... about 50 % of people over the age of 50 have a green fried thyroid anyway  irrespective of HCV .so if only 20 % of people on treatment get it I guess treatment is good for the thyroid......if we are doing math like the poster above..
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Avatar_m_tn
It's really not known how many people die from HCV. The estimate is that less than 50% of people infected with HCV are diagnosed.
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Avatar_m_tn
It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences.

So is it 8,000 - 10,000 deaths per year in the 2.7 million (0.3%) that have it in the US or the 170 million (0.05%) that have it in the world?
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Avatar_m_tn
I generally presume that facts admitted by the person for whom the facts are not so good have some special validity.  
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Avatar_m_tn
wrong cite on Dr. Koretz.  Should have been:

http://www.nytimes.com/2010/07/22/business/22hepatitis.html?pagewanted=all
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Avatar_f_tn
So we are talking about the whole population of known Hep C patients with our stats, you are taking about the projected 1-5% that would die from Hep C...we are talking about 2 different things...who knows how many of those that treated and have been cured would have died from the disease...or at the least had their life drastically altered by the disease...there is no way to know cause you can't take the treatment back to see...for me, I rather treat and not take the risk...
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Avatar_m_tn
Mike .. I have read many articles that cite that aslo ..actually some estimate as many as 65%.however I guess no one knows the exact number .
So that would mean  given there are at estimate approx. 180 mill known infected there  most likely is approx.117 mill..that don't even know they have it.

If the scientific data that med scape quotes that approx. 20  -50 % of people will develop cirrhosis in their lifetime and therapy cures approx 75 % of these folks then my math says approx. 30 mill people could stave off having a chirrotic liver  because of treatment .
more awareness is needed surely...so more can treat...
Will

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Avatar_m_tn
Thank you, Mr. Simon, member since 2002.   I see you have today posted two recently articles published articles that peripherally counter the assertion that interferon treatment causes cognitive deficit.


Do you know who funded the studies?


As to the study above, what "significant" cognitive functions were improved?


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Avatar_m_tn
It's a free country.
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Avatar_f_tn
Amen to that!
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Avatar_f_tn
"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences."

      ---------------------------------------------------------------------------------

Ramble.....Your above quote may be true but the bottom line is when you actually find out you have Hep C.  If I knew 30 yrs ago, I probably wouldn't be on this forum today.  

Jules
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LOL someone questioning the validity of MIkeSimon's articles and studies....if that dont beat all I'll eat that fried green thyroid.

Dear Big Pharma, please stop trying to make new drugs to cure hepatitis C. We dont need them nor want them because we will live forever, we all have beautiful shiny healthy livers and can't risk The Davil Intafaron.
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Avatar_m_tn
Are your posts that of a pharmaceutical rep?

My posts are of a person who suffers arthritis, disfiguring psoriasis, 3 years+ brain fog, gradually decreasing, and a disturbing deal of suicidal ideation never experienced prior to treatment.

None of these symptoms (with the exception of some degree of brain fog) began until one to two months AFTER cessation of thereapy,m which in my mind mnakes teh studies about side effects during therapy somewhat irrelevant and misleading.  

Perhaps I am in the minority.  Perhaps I am very unlucky.  

On the other hand, perhaps there are enough like me that the 2 or 3 out of 100 saved are not worth the [who knows how many?] badly injured by the drugs.

We do not know the answer.  We do know that there are a "significant" number of long term injuries, though.

Why has there been no long term study?   Why no study of people 12 months afterwards, except from Australia with a national Health Service?  (a study which called for more research and cited a number of patients, some with SVR, who questioned the benefit of treatment)
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PS Ramble if you ever watched ANYONE die of end stage liver disease or valiantly fight to get a liver transplant that will save their lives - you would know how ludicrous your posts are.

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Avatar_m_tn
I was diagnosed in 1992.  Hep C was newly discovered and poorly treated.  The CDC said 5% then. My present math presumes 5%.

I hope this is not an "inane rambling."

I know I am posting a lot.  Forgive me.
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Avatar_m_tn
Fair enough to call "BS."  

I cannot find the drug warning in which i saw the 20% number.  


The following says 2.5% to 20%.

http://www.hepatitis-central.com/hcv/ifn/sideeffects.html


A current Pegasys warning says 4% during treatment.

http://www.drugs.com/pro/pegasys.html#S6.1


Research shows that interefron triggers failure, and failure takes some time to develop, per the following .pdf

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCYQFjAA&url=http%3A%2F%2Fjcem.endojournals.org%2Fcontent%2F89%2F8%2F3656.full.pdf&ei=COImT7eIIYaatweMobzaCQ&usg=AFQjCNEwPbG1fqSF7Mc0yIci0PEUsDznJg&sig2=CSqwXcdIJGRM1xfT9_GZeg.

My own thyroid failure did not begin to occur until some few months after cessation of treatment.



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Mikesimon had a transplant from hep C, did tx 3 times and finally rid himself of the virus. He is great at digging up research information for all kinds of things hep C, related on many sides of the spectrum.
To call him a rep is ludicrous.
We are lucky he still takes the time to post.

I'm sure I got hep C in my late teens. Nevertheless I landed up with decompensated cirrhosis.
Did tx, relapsed, had a transplant and am doing currently doing tx.
Of course I wish there was something else for me to use other than interferon but you know what? I'm not bitter.

Life is what it is.
Nobody forces anyone to do treatment it is our choice.

Please check facts before passing them as truth.

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Thank you.
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707563_tn?1395081210
Hi everyone -

Please do not disrupt the forum with personal insults and fighting. Either ignore what you don't like, or report it.

Thanks!

Emily
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Avatar_m_tn
Whoever flagged and had removed my last post did a disservice to the community.  

That speech which most needs to be protected is often that which one dislikes.  Some tried to stifle Copernicus when he said the sun was the center of the solar system.  Some laughed at Columbus when he said the world was round.

I questioned the motives of a poster with 8293 posts in less than 10 years who belittles the notion of long term side effects and who posts a lot of "ra ra" interferon materials.  

A person on this board for 10 years should know that long term side effects happen.  Belittling them (or me as he did above) is off base, IMO.

Perhaps I am completely and utterly wrong, but  my point had some factual support whether you liked it or not, and it would have been better addressed by reply than removal.  

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Avatar_m_tn
It sure wasn't taken down because of anything I did.
I don't mind you writing what you want.
Your problem is that I really have no ax to grind. I didn't enjoy interferon and ribavirin treatment and I did over 3.5 years of the stuff. But Rambleon I finally cleared the virus which I believe was critical to the fact that I'm alive now and in the health that I'm in. I could not have waited till now to start treatment. That's a fact.
Some people have to take interferon and ribavirin and I am always searching for the truth about this disease and its treatment(s).
I have no present stake in the new drugs. I did have a stock position but I'm out now so I have no conflict of interest.
I really wasn't saying that you were inane. I did feel that some of your comments were and I posted what I thought.
I am well aware of the side effects of treatment. I'm also aware of the side effects of having HCV. And they too can be serious.
Do you really think that I haven't heard all of this long before you arrived? I simply have what I believe to be a broader perspective. Like I said Rambleon - some people have no choice but to treat with the SOC and they weigh the risks against the likelihood of success and the benefits to SVR and they make their decision.

Mike
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Avatar_m_tn
A well stated reply.  

And from my side, I get a message here and there thanking me for saying what I say.  

My perspective is from one who has been grievously injured and felt effects that I never could have imagined before, when I was healthy and strong.  Your perspective is from one who has been wondrously cured.  Perhaps the truth lies somewhere in between.

Thank you,

Jeff
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Avatar_m_tn
Yes Jeff, truth usually does lie somewhere in the middle.
And I really do feel for your situation. I know that people have suffered as the result of treatment. And people have suffered as the result of not treating.

Take care Jeff and I wish you good luck.

Mike
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rambleon40 said:
"I questioned the motives of a poster with 8293 posts in less than 10 years"
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Personally I'd be more inclined to question the motives of a poster with 70 posts who has been here less than a year, but in the end, scientific data, research, and discussion should be the debate, not who thinks what of whom and what their intent or ideology might be.

"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences. Perhaps I'm very unlucky..."
------------
Perspective is in the eye of the beholder, rambleon; my husband was rather young, probably 18 or 19 when he got it but is suffering serious consequences.  Your opinion has merit just as much as anyone else's but I question what your agenda is; my husband would gladly have acquired any of the permanent side effects you are experiencing if only he had been successful in clearing his hcv -- you wanna trade anytime, give me a holler.
~eureka
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707563_tn?1395081210
Please get back on topic, and again, if you have something personal with someone, either ignore it, take it to PM or report it.

Emily
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Avatar_f_tn
And people have suffered and died after trying TX three
times as well . He was only 26 .

The newer PI's were what we hoped to wait for
I continue to hope and pray with my friends
for  cure for everyone
with it will come horrific sides, terrible and some lasting sides for some

OK , I don't mean to sound mean, I'm not ( you are alive) thankfully.

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Avatar_m_tn
What has "how many posts and in what length of time"(by anyone) have to do with anything ...??
I must have missed the significance...
Will
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Avatar_m_tn
I am alive without having cleared the virus.  I have never come closer to death than the two times I put a loaded  gun to my head during bouts of terrible despair brought on by what I am sure is organic brain injury from interferon.  I am embarrassed from being so dramatic, but these things are true.  

A side effect of treating my psoriasis and psoriatic arthritis with careful eating is that my liver enzymes have, for the first time in 20 years (and just last month and 3 years after my last bout of treatment), gone within normal limits.  

I do not question whether one should treat Hep C.  I question whether the Big Pharma remedy is the only or even the best way.  I do not believe "best" has been proven as there has been no study quantifying and qualifying long term side effects and then doing a proper cost-benefit analysis.

I just had introduction to a river boat pilot in Louisville on Friday.  52 years old.  Loved his job.  Brain now so addled that he can't do it. Arthritis also.  Depression.  Applying for disability.  

That's a horrible (indeed tortuous) situation, and it counterbalances at least one of the 2 or 3 out of 100 that are saved by interferon combination therapy.  

Remember the other 95 out of 100 would not have died anyway without treatment.  

Living like that is daily torture, many times a day.  
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Avatar_f_tn
Many of those 95% are cured by current methods, so no they won't die from liver disease....also many will not suffer long lasting side effects, there will be some i am sure such as your self, but there are many here who say they are ok, and i also personally know people who are ok after treatment...what ever percentage you are in is the most important percentage wether it's 1% or 95%...
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Hi there -

This thread is now closed.  While it is important to know what the side effects of any treatment are, and to hear differing views in order to make the most informed decision for you, it is also important to note that for some, current standard treatment is the only option they may have.

We have members who need(ed) treatment in order to stay alive, and "big pharma" saved their lives.  We also have current members who have lost family members to hep C, or who are very close to death as we speak, and others who have tried everything, and failed. We have members who haven't treated, and are doing fine, and others who are using what could be called alternative treatments.

It's important to note this for new members who may need the treatment and are scared, realizing it's their only option.  

Some have to deal with lingering side effects from interferon, others don't.  It's not a one-size-fits-all situation, unfortunately.

Emily

**********************   CLOSED THREAD   *******************************
                       NO MORE POSTS, PLEASE


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