Post treatment symptoms of Pegulated Interferon\Raboviron

[PeggyE]

My wife has succesfully completed 48 weeks of treatment for HepC using the Pegulated Interferon\Raboviron combination.About the secound month of treatment joint pains developed in her hips and elbows.Treatment finished in January 2006 and Blood tests in July indicated no virus detected. She has returned to work in September on a limited basis.Her pain in hands,hips and elbows has been increasing at an alarming rate. She has been in contact with her doctor regularly, who has been very good in doing tests for different arthritis's which turn up non detectable.She will see an athritic specialist in London in November.  To date I have found very little on Post treatment effects\symptoms. My question...does this treatment exaserbate arthirtic symptoms in patients post treatment?

[otterwatcher]

yes I was  dx with CFS by my GP 6 months post treatment and 5 years post treatment my liver consultant diagnosed Post Interferon Syndrome. Fatigue,joint muscle and tendon pain,memory and c
oncentration problems,visual issues,exercise intolence,chemical sensitivities,sicca syndrome are the main symptoms.

[can-do-man]

Hi GLCII there is now a forum just for what you have questions about. While I know it doesn't help you any but there soon will be treatments that do away with these meds. And it seems people think there will no longer be any issues.

Hope things get better for you.

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670

[GLCII]

Hello

I went thru four years of the Peg-Intron/Ribavirin TX within a seven year period and I must say with all honesty, I have never felt the same as I did before the TX. I have consistently felt worse. My Thyroid wacked out causing the Doctor to have it radiated in order to just kill it the rest of the way and put me on thyroid meds and am also having sight problems along with a great amount of fatigue and some joint pain. I have also experienced short term memory loss which I find disturbing. It's my personal opinion that the TX hasn't done me any favors outside of temporarily halting the virus. I would be very interested in an in depth study of the effects of interferon and ribavirin. I think there is something to it and a study should bring to the forefront what I expect. That is that there ARE long term of Effects post Treatment.

[Dee1956]

Good thread for post tx
Thank you

[DaveinMO]

I am 8 years post tx......and still have many sides that were not present prior to tx.....the premature aging is, I believe, due to the damage done to our hyprocondrial dna.....and I believe it is not repairable....but can be helped with specific medications and supplements....

We are and have been on a journey which to some is not supported and others is overwhelming.....me....I trust science, if the studies are done independently of those who have a stakehold in the finds.....Just Saying!

Doc_Caring in MO

[hippygem]

Hi
I finished 2nd round tx October 2010, 48 wks.  I am SVR now, found out in April 2011.

I now find that I have swollen hands/knuckles/joint pain, wrist pain.  Back/neck pain.  Lower left back/hip/thigh/pelvic pain.

Ive had RA blood tests but nothing showed up.  So they sent me for xrays on the hands, and there is bone deteriation.  
Was sent to Rheumatologist, and he put me on 20,000 mg vitamin D, one a week.  plus 15mg fish oil daily.  I am to have an ultrasound on my wrist/thumb area and they are going to inject cortisone into it to take away the pain.
They also want to have xrays on the hip/pelvic area, so booked in for that, they think it is bursitis.
They arent sure if I have osteoarthritis, and waiting results of other tests.

If I dont improve between now and my next rheumatologist visit which is in August 2011 they will send me for 'nerve' tests and investigate further.

Mentally I am struggling, just to think straight and stop the jumble going around in my head, its hard to retain information, and huge memory issues.

I will update here in this post when I have more results in August, I think its important that we keep this thread going even though it is an old one.

[DoubleDose]

I think its plain and simple a case of post-tx after effects, which seem to be more or less a typical outcome for many of us.  If you look at the attitudes five years ago versus today on post-interferon syndrome, you will see that the issue has gone from being something that many people denied existed, to now being pretty plainly recognized by almost all forum members, and a rapidly increasing number of doctors, in many different fields.  The complaints of rapidly escalating, pronounced problems after ending therapy have been repeated over and over by countless people on this forum, as well as in international surveys.  This is something the FDA needs to be much more aware of, through direct feedback from us, and our physicians.  Many of us are suffering long term medical issues directly as a result of having done large amounts of interferon, which is indeed an extremely powerful, immune system modulating drug, and that also is capable of creating major changes in the way that our nervous system, immune system, and our brains work.  Some may bounce back to normal in a few months...but I believe we are seeing a large group that continues on with a wide range of nasty physical problems that they DID NOT have before they did the tx.  Its no coincidence that all of these problems begin after ending therapy...it is a direct result of the therapy, from what I have experienced, and observed in others who suffer from this syndrome.  Some medical centers term it "post-interferon syndrome", others have just called it long term interferon after effects....regardless of what you call it...it is a reality...and I have yet to find, or read about any doctor that knows what to do about it, or how to treat it.  Let's all keep demanding answers, and more research.

DoubleDose

[Xville]

Just want to say it's disappointing to be getting these rough symptoms after treatment ended when I was anticipating feeling better.  Just want to say that.  I don't have the brain power to come up with anything more intelligent for all you genius types. I guess the meds fried my brain.  I hope I achieve SVR but I'm about over the whole mess anyway. Screw this.

[Tamieka]

Hi there,
I am new to this site, and is the first site I am a member of.  I finished 48 weeks of combination treatment at the end of March 2010.  I am going tomorrow for my 3 month check up.  I am surprised to hear so many have post symptoms.  I was left with a very underactive thryroid, which has seen me gain 7 kilos, as well as facial acne and other accompanying side effects.  Thyroxine seems to be helping a little with the fatigue, but not the weight nor the acne.  For the past two weeks, my lips seem to burning 24/7.  It's such a shame to go through 48 weeks of hell as I incurred every side effect of therapy severely except for insomnia, as I have a four year old with no help except for one day per week, and then to end up with ongoing symptoms.

I do wish everyone the best of luck, and hope all your post symptoms seem to disapear over time.

My son is calling me, better go.  

I am so glad I am part of a site that I can relate to, as none of my friends know, my family have not been supportive and no longer have a relationship with them, and it's not the same only having to speak with my husband and specialist.  I look forward to some company.

cheers,

[Upbeat]

It all comes down to Quality or Quanity of life.    

[jivacite]

I was treated twice..once in 2000 with the 3 time a week combo and in 2003 with the PEG combo. I had no choice. My liver was stage 4 and I was given 2-5 years to live. Well I'm still here 5 years past my expiration date but things are a little sour. It seems the biggest lasting effects are fatigue, bone damage and possible brain and/or DNA damage. But just my opinion. Mine are fatigue, tinnitus, and a little short-term memory problems. We are slowly being recognized by the medical profession...their little lost lambs. I still have no detectable viral load so all in all I would rather be on this side of the grass. But my advice to anyone thinking about taking the therapy....only do it if your liver is already torched. Otherwise clean up your act and live long and prosper!

[hippygem]

Forgot to mention, have you looked into Fibromyalgia, body aches and pains, mention it to your doctor.  It is a symptom of HCV, and treatment, and the general population also can get it too.

Linda

[hippygem]

Tonya, maybe you have arthritis, the treatment can exacerbate arthritis and make it worse during and post treatment.
There is a name of a powdered product that you can take, but the name of it has eluded me, give me time to think of it.  Sorry, Im on treatment just now and memory is a huge issue.

Linda

[Bill1954]

Tonya, scroll to the top of this page, click on the ‘post a question’ button and paste this question as a new post; this thread you posted in originated in 2006, and has been archived.

I don’t have any specific info for you; I hope you find answers though—

Bill

[tonya771]

Hi, I am new to this so bear with me, lol!  I completed my treatment in April 2009. 6 month treatment of interferon and rib.  All my tests show clear, so that is all good.  When I started treatment they warned me of the side effects, flu like symptoms, depression, headaches and all that good stuff, but the treatment wasn't too bad, they started me on an anti-depressant and medication for my headaches.  But for the last yr or more I have been having the flu like symptoms, major body aches mostly in my upper torso, back problems and I have had every test imaginable done to figure out why I am in so much pain everyday. Some days are better than others.  I am on cymbalta, lyrica, norco (pain), ambien, and vitamin supplements.  I am so frustrated and so is my family because no one seems to be able to tell me what is wrong with me.  I am going to see a rheumatologist in April so hopefully he may be able to get me some relief or at least some answers so I can get my life back to normal.  If anyone out there has any information on new treatments or remedies or any answers for me I am open for suggestions.  Thank you

[hippygem]

Sorry, that was supposed to say ' fibrosis stage 3' and after treatment was reversed to 'fibrosis stage 2'.

Linda

[hippygem]

Hi Hecklerr

Since I posted in this thread back then, I will say that the post treatment side effects lasted 3 years for me, that may be because I was a relapser as well, but my memory and concentration levels changed immensley during and after treatment.  And I never got back to my 'old self'.

I am now on my second round of treatment, for 48 weeks this time, higher dose of ribavirin - 108 pegintron, 1000 Riba, started Tx on 11/11/09, RVR at week 4.
Had my 19th injection this week.
Im a relapser from 180 interferon & 800 Riba for 24 weeks in 2004.
I had fibrosis stage 4 before first treatment and then biopsy showed reversal of fibrosis to stage 2.  So it wasnt for nothing.
I just wish that I had done 48 weeks of treatment the first time, especially with having fibrosis.
I also got control of Insulin Resistance this time around, so hopefully I wont relapse again.

Its a chance we all take when we go on treatment, the side effects and the post treatment side effects, unfortunately a lot of us didnt know the repercussions of treatment, and lingering post treatment side effects.  But with everyone now warning everyone else through forums like this, better decisions can be made.

We definately need more post treatment studies and follow ups.

Also, there isnt a VL machine that reads ZERO, only that we get the virus into an UNDETECTABLE level, and our immune systems keep it at bay.  I believe the virus is still in our systems, in our brain and tissues.

I used to have a Rodesian Ridgeback, fantastic dog, loved her, she died of kidney failure when 10 years old.

I also have to agree that pets are a great distraction from treatment, and good company.
I recently have a new addition to the family, my first grandaughter, so she is keeping me 'sane' or  I visit her when Im depressed and have the energy.  

Linda

[Hecklerr]

Hello All,

I was relieved to read your threads on Post Treatment Sydrome, as my doctor is calling it.  I completed 44 weeks of Peg Intron/Interferon and Rhibasphere treatment for Hep C.  It was hell - incredible fatique, depression, insomnia, night sweats, ears ringing, brain fog, muscle and joint soreness, hair loss, you name it - I had it. All the side effects they tell you about and MORE.  The doctor and I finally agreed that rather than continue the last 4 weeks, that it was appropriate for me to stop. He also said I could expect the drugs to take a month or more to get out of my system. His partner had told me more like 6 months. The nurse practitioner that I saw bi-weekly said a month or more.  



It's been just over 3 months, and while I can tell some improvement - not as brain foggy - I am experiencing extreme muscle and joint pain, chronic fatigue, ears ringing, insomnia, and skin itching and breakouts.  It almost seems worse at this point, because when I was brain foggy during treatment, it didn't seem so bad. Now that I can think straight - this is horrible. They have me scheduled for Xrays of my knees and blood tests to check for arthritis, thyroid problems, etc. Other than that, there's not much they can do.  They call it Post Treatment Syndrome. They're not too sure why; they seem to think that it may unmask problems that may already be there, but they are not sure. So at this point, while the tests say I am Hep C free at present, I am hoping that in the future I will get better as far as the side effects post treatment.   Let me sign off by saying that my hair seems to be growing back just fine. Also that this is one hell of a cure.  I am sure that if it works or not, life will be better.



It was a very difficult decision to go through the treatment, as I felt absolutely fine - strong, healthy (in all other ways), full of energy, etc.  If I were to have to do it again, I would definitely have done things much differently, i.e. quit my job, taken a full year off, had my spouse take a year off with me. I can't say how important it was for me to have my wife help me through all of this. I feel for anyone who has to do this by themselves. Truly brutal. My sister went through cancer surgery and chemo last year far easier than this Hep C treatment has been. Bless her heart.  



Finding these Post Treatment posts has been a God send, as I see I am not the only person having problems after the fact.  I guess it's nice to know I'm not alone, although I certainly don't wish it on anybody. I guess all we can do is hope and pray that the treatment works for as many people as possible, and if not that it at least will alleviate any Hep C problems they may be having now or in the future. Again, thank you all for taking the time to post, as it does help. Trust me - it helped me!

Hecklerr



PS About dogs.....I have a Rhodesian Ridgeback and a Boston Terrier, and until a week ago, a French Bulldog (God rest his little doggie soul). I found that throughout the treatment and to this very day, particularly with my Rhodesian Ridgeback, my dogs made me feel better even in the roughest of times. I found that taking care of them, loving on them, having them make me laugh, them loving on me, was a great ointment to the symptoms of all this treatment. I cannot say how important it was for me to have them in my life. Don't get me wrong - I love my wife and she's been a great boon to me in all ways. But the goofiness of my dogs and total unconditional love has been a God send. ; -)

[mysunshine]

I have done interferon and ribavirin 4 times since 1995. Last tx 2004. I am undetectable now, but I am on disability because of fibromyalgia and cognative imparement, plus many other problems. I lost half my thyroid,very early menopause caused my tx. I am living proof that there are some that suffer greatly from the drugs. I wish I could do the things I use to do, but I can't. I am so fatigued, one day I am doing ok, but the next I can hardly get out of bed. I'm not depressed. A good test for depression is give the depressed person a blank sheet of paper and tell them to make a list of what they would like to do tomorrow. It would most likely be blank. Give me a blank sheet of paper and the list would fill up the whole page. I would LOVE to do them, but my mind and painful body can't.  I know there are those that benefit greatly from the tx, that's wonderful. For me, it has been a nightmare. As you can tell, today is a bad day, hopefully tomorrow I will feel a bit better.

[merryBe]

I don't find it surprising that after the body has been forced into a constant state of immune response for a year or more, that readjusting to normal levels on the lymphatic side of things could prove difficult. The body fights hard with extra Interferon...suddenly that's shut off and what does it fight now?  Sometimes it turns on it's own joints etc. because it is still in fight mode.

I like what HR said in the Health Pages,  (on the HR thread) regarding tapering INF being a better outcome for the patient from the standpoint of allowing the immune system to readjust itself more seemlessly. Perhaps what they put her on will help to settle it back.  I know with some types of autoimmune Interferon is part of the tx, so perhaps even a return to a lesser dose and a gradual weaning might be helpful.
It all depends on what the screens show the problem is, but it might be worth discussing with the doctor, because steroids, the other often used remedy, can be harder on a liver.  Good luck to you both, it might not help much to know, but it is true you are not alone in having these after effects.

mb

Sorry for your wifes trouble, hope it gets resolved for her.

[skydog007]

Posted this this AM but it never made it to the forum.  Maybe that's an omen?  I am post treatment with Pegintron/ribavirin tx.  Clear of virus for 13 months now.  About 2-3 months after treatment I started getting hip, knee, foot and back pain which has continued to worsen over the months.  At first, after getting off treatment, I felt good.  I could walk a little ways and do a few things.  It seems that as time goes on, I continue to get worse as far as joint pain and emotional stability.  Like your wife, there are no supportive medical findings.  In fact, I'm in near perfect health!  If it weren't  for the fact that I'm in excruciating pain every day and my emotions are running rampant like a roaring lion, why everything would be just hunky-dory.  I'm very sorry, but as I answer this, I am having a very bad day emotionally for no reason at all, as yesterday emotionally I felt just fine, so I will make this brief so as not to unduly spew my venom on anyone else.  Please forgive me.  All is not always bad, but sometimes it really is.  I just have to call it as I see it.

[HARRYBEADS]

  DD, So all we have to do to regain our old selves is take antidepressants, what ones and what dose please!!! Most people on treatment are treated in advance for depression and monitored because tx is proven to cause depression.Depression is common and anticipated in all life threatning illnesses...(GO FIGURE, NEED A STUDY FOR THAT,I HAVE A HYPOTHESIS I'D LIKE TO TRY ON YOU). It is a fact that interferon based medicine effect the immune system and subject the patient to autoimmune disorders short and long term. Here is a few examples MS,PARKINSON,various cancers,lupus like disorders, arthritic disorders, vascular disease , heart disease.These are all in the product warnings that come in every pack,written by the manufacturer.
Some believe that hep c is an auto immune disease in it's self and that the virus does not destroy the host but their immune system does the damage to the liver. Symtems of the common cold and flu are all auto immune over reactions that cause damage and possible death.
The choice is ours to take these symthetic hormones or we face possible death or worse.We sufferers are looking for solutions to our conditions and feedback is the scientific way to do this , me I'm in three studies how about the rest of yas.

Harry

[hippygem]

I did the tx in 2004, relapser, geno 3.  I still suffer from brain fog, memory loss and fatigue.  We do need more follow up studies about interferon, they should have been done years ago.   I now take 'Hep C Complete' from All In One Nutrition, which has selenium, milk thistle and alpha lipoic acid in it.  Been taking it for 9 weeks now and the fatigue isnt as bad as before.  I have more energy and dont lie around on the couch all day whenever I could get the chance.

[desrt]

Switch to vicoprofen and find a good rheumatologist.