Treatment worse than disease-last option only

[randy1499]

my question is basically, has anyone had the horror I had? And is there a purge?
My story:I
t has been 5 years since the horror of my ribovirin treatment. I write this for several reasons, not the least of which is to warn people not to get the treatment unless you have no other options. A little background: I was diagnosed in 1994 during a routine visit to the red cross donation center as having hep-C. I don't know how I contracted it. During the next few years I was in contact with an internist. I was told that although my viral levels were low, in the 600,000 range, that they could be ecpected to increase. I had fatigue symptoms, and decided along with my doctor that treatyment was not warranted- except for changes to my lifestyle, such as quitting alcohol consumption and whatever else would ease the strain on my live. A few more years passed, and the fatigue increased. By 2003 I was convinced that an early cure would be the smartest option. I went on a course of ribovirin and peg-intron. Initially i had only the typical flu-like symptoms. Within a month or so it became more and more difficult to work. Within two months I found myself fainting while at work, so I took a leave. My appetite dissappeared, and I lived on protein shakes and whatever other liquids that didn't nauseate me. Meanwhile my viral levels dropped maybe 10%, and my doctor was concerned that any drop in dosage who be counter-productive. I started developing marked nervousness and inability to sleep soundly about 3 months into the treatment. My T-cell count was quite low, and we reduced slightly my dosage of ribovirin, keeping the same injections of peg-intron. By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing. As soon as i sat, i would start to have wild thoughts, insane thoughts. that i could not stop. I was totally non-functional, unable to drive, to shop, to do anything but survive.  My doctor lowered the dose again, but he was not inside my head. In retrospect i know that i was quite insane, thinking only about how death would effect my consciousnes, and whether I would forever exist in a state with no mind or body, alone and afraid if i did die.
I think if not for that, i would have considered suicide.
In a lucid moment at the 5 month mark, i stopped taking the medication. Within days, I was clear enough of mind to get a ride to my doctor, whom I had been unable to visit the past month due to my insanity. He chastised me for quitting the meds, then prescibed lorazepaum for the anxiety. This helped somewhat, but I was so fearful of the meds I never took them again. My  viral level had dropped to 200,000, but within a year returned to the previous 600,000. So basically I tortured myself for nothing.
Thsi is not the end of the story, however. I believe that this drug did permanent pysical and mental damage to me. I occasionally get the same horrible thoughts I did during the treatment, and only anti-anxiety meds help- I am constantly fearful that sooner or later i will return forever to that insanity. Also, I the sexual side-effects I experienced during treatment have continued unabated. No little blue pill helps as I am nearly impotent.
So to summarize:
I went through 6 months of excruiating torture and as a result:
1)my hep-c is unaffected
2)I have no sex life
3)I am on the verge of insanity on a regular basis

I had come on this site hoping someone else had similar experiences and/or if this toxin was still deeply buried in my cells (like mercury/lead or some other toxin that stays in your body) that others had found a way to purge it.
A man in his right mind would sue Shearing-Plough (who graciously suppied it to me free of charge due to my lack of presciption plan-perhaps they needed more guinea pigs to test it) but who knows what disclaimers are signed in exchange for this. Well i am paying for it for the rest of my life.
A man in his right mind would attempt to go on SSI, as I barely have the energy to finish each work day.
Or he would attempt to tell the world that being half a man has increased the possibility or dying alone.
But I did this treatment, and I fear i may no longer be in my right mind.
I beg you, do not make my mistake.
Use this treatment as a last resort.
Have someone monitor you if you decide you have no other option, and at the first sign of side effects, discuss with them whether you could live with the fact that the side effects may never GO AWAY.

[alagirl]

Look.  Interferon is not a people friendly drug and I'm sorry that your particular experience was so difficult.  That said, there are certainly right and wrong ways to treat.  The right way to treat is to do all of the research ahead of time.  Many treatment side effects can be lessened to some extent by helper drugs like procrit and antidepressants.  

There is no treatment protocol where someone is kept on treatment after 12 weeks with only a marginal reduction in viral load unless their doctor is a moron.

HCV is going to affect different people differently.  There are those who WILL decide to treat before the virus can damage their liver, kidneys, and other bodily systems and there is NOTHING WRONG with doing that.  

People who treat, after careful study of the treatment, know that there are options that will help treatment to go more smoothly.

I treated right away and although I had a difficult treatment, I would do it again tomorrow if I wasn't SVR.

[fretboard]

"By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing".

Sorry to hear about your horrendous tx experience, it's a very unfortunate story.  With that said, it is for this reason that this forum encourages educating yourself prior to txing.  You never know if your doctor is good enough to tx you, or if you are good enough to know when enough is enough.  Unless you know something about what to expect, don't try the tx until you do.  I stongly suggest to anyone reading this, if you are going thru anything just mentioned above in Randy's story, then maybe you should put off txing for awhile and/or re-group.  I also suggest to anyone who read above that if you have a doctor who is either not listening or for some reason you are not getting thru to him/her, that you find someone better.  Good luck and God Bless  

[alagirl]

But I did this treatment, and I fear i may no longer be in my right mind.
-------------------------------------------------------------------------------------------------------------------------------
You SOUND emotionally very distressed.  I think a good first step WOULD be to talk to your doctor about a good antidepressant.  Many times, this helps actual physical symptoms, including pain and discomfort.

Also, once you get on an even keel emotionally, why DON'T you look at an application for SSDI?  There is certainly no shame in that, as you can always go back off of it in the future if you feel more able to work then.

But I would list the emotional and health issues you are feeling, in order of the degree to which you are having difficulty with them.  And then start working with different physician's to try to get some help with your various symptoms.

When you break them down like that, its a bit easier to tackle them with the help of your medical professionals.  

[comeagain]

"By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing".

Sounds like panic anguis atacks to me, I had it during my first tx also had very very weird thoughts felt like the brain didn´t functioned as it should and was getting worse and worse and I was afraid it was gonna get permanent aswell.

After 2-3 weeks everything was normal thank God and after 3-4 months I also started to feel better physically then I`v done in 25years.
First tx was litterary hell for 24weeks, and I said never that I do this again.
But after 10 months since relapsing I was prepared to meet hell a second time I`m present at week 40 and it hasn´t been at all that tuff this time.

I got to say this though, some years ago i read an articel about schizophrenia and it said people often get it between the age of 25 and 30, and in poor countries where no meds are available people get completetely healed after a couple of years, some die though. But here in our rich countries nobody seems got get totally well .
More like conserved in the disease lobotomized kind of and it scares the shiit out of me much more then this tx meds.

ca

PS. didn´t took any ADs or sleeping pills only headache pills and atarax.

[Mr Liver]

Unfortunately I have heard your story and various similar versions many times over the years. Some don't know, but five years ago there were still many docs who treated patients beyond 12 weeks even without a 2 log drop. Many docs still today do not fully appreciate the devastating mental effects that INF can create, let alone 5 years ago.  And complaints were not answered with rescue drugs - quite often they would result in a discontinuation of your treatment. . It was only 7 years ago that geno 1's often didn't get their first PCR until 6 months into tx.

You are absolutely correct that IFN should be used as a last resort. Opinions may differ on where to draw that line, but no one can argue the physical and mental effects that come with IFN tx. And they can be devastating as your testimony details.

I wish more people would speak up about the 'other side' of tx since no serious discussion can take place concerning this topic without presenting all of the facts, good, bad, and ugly. When the very real risks of tx are omitted or continually downplayed by some members here it does no one a service. After all medical complications are a part of the complete picture behind tx.

Thank you for sharing your story. Alot of people have suffered permanent, and in many cases,debilitating conditions as a result of treatment and their plight should not be ignored, nor downplayed. And no one should blame a patient when it is a doctors duty to explain tx and fully inform THEIR patients as to potential risks and side effects. No one patient can 'guess' all of the correct questions to ask, nor can they trust everything they read on the internet. We put our faith and trust in professionals as a matter of necessity all of the time. We have to put faith in many professionals as we can't possibly become experts in all of their fields in an effort to learn what they should actually be telling us. I totally understand where you are coming from.
Best of luck on regaining more of your health.
Mr Liver

[desrt]

There are some people who shouldn't take IFN even with heavy doses of psych meds. This is why IFN carries a 'black box' warning, and is the actual reason Randy can't sue S-P. I treated at the same time Randy did and every dose of Peg-Intron came with a package insert with a full listing of possible side effects.
Most patients can deal with IFN psych sides if monitored by the Rxing doc. Mine asked me if I was *sure* I didn't want a nice AD almost every time he saw me during tx.

[alagirl]

I'm curious as to whether you've had any recent liver biopsies, or when your last biopsy was and what it showed?  

[Mr Liver]

I've been on HCV forums for 10 years and I can count on ONE hand the number of people that I know who have read the inserts BEFORE starting tx. This is what we pay doctors to do--- decipher and explain the mouseprint on the inserts.

INF tx did not always have a black box warning. Neither of my two tx had BB warnings. In fact, depression was listed under itching and hair loss, somewhere near the bottom. The black box warning came after the tx was available and in use for years. After a few suicides and homicides as a result of tx, the FDA issued the BB warning.

Don't you think a doctor should at the very least mention the fact you are taking a drug with a BB warning and what the warning is for ? I think the number of those unwilling to take ADs would plummet if all docs informed of this, saving many from having to discontinue their tx. Depression and other psychiatric events are responsible for 30% of all discontinuations of tx. I'm sure a survey would show that most people are not informed of the most SEVERE psychiatric issues that can accompany tx.
Mr Liver

[jmjm530]

Very sorry about your experience with the treatment drugs and thank you for sharing with the community.

It's very important that we hear the bad with the good and even the ugly. From my experience here, most people do not feel better after treatment -- even successful treatment -- and in fact many feel worse. Some like yourself, much worse.

I agree that treatment should therefore be a last resort and only used for those with significant liver damage, especially with geno 1's, the hardest to treat genotype.

That said, I do understand and respect those who decide to treat with little or no liver damage. Hopefully, that decision -- like any treatment decision -- is made thoroughly researching the subject out as well as taking into consideration anecdotal accoutns such as you present.

Here are some past threads that deal with side effects both during and post treatment. Some say those with severe side effects are over represented in groups like this. Others contend the opposite. I don't think anyone has any way of knowing since the study data is sparse.

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629

[alagirl]

Absolutely I agree that the doctor is responsible to tell you side effects, particularly the serious ones, prior to starting ANY medication.  

That said, I can't (and don't) believe that people treating hcv on these forums don't read their package inserts.  Certainly, I read all of mine, and I've read either my inserts or I've gone online for the official insert if one didn't come with the scrip from the pharmacy, for ALL of my medications going back years and years.

In fact, we've had numerous arguments on this forum before about the tx meds and how best to take them, and what's ok and what's not, and different people have quickly posted the package insert info.

Granted, the same precise warnings may not have been on inserts five years ago as today, but certainly, there were plenty of studies online if you just looked up the word interferon, that spoke to the difficult side effects and their prevalence.

But yes.  Ultimately your physician IS both legally and ethically responsible to tell you about treatments, medications, and their side effects.  To wait for that to happen though, is folly.  Nobody cares as much about your health as you do (with the possible exception of your loved ones I suppose).

But in terms of lawsuits, since the material was available, I think the only actionable party would be the physician.  Even then, the statute of limitations is likely past unless the injury had only just become apparent.  In my state, the statute is two years.  I'm thinking that in most civil litigation this would be true although perhaps there are states with more far-reaching statutes.

I think that if doctors did a better job talking about the psych implications of interferon that it seems almost inconceivable that more people wouldn't go on ad's prior to tx, although even in these forums it seems as though a lot of people think that part is either not going to apply to them, or that they have some other block to taking the ad's.  I also think that people underestimate (and doctors seem never to mention this), the amount of general confusion drastically lowered blood counts can have as well.

[randy1499]

First of all, thanks to everyone who read this.
Let me see if I can't answer a couple of the points brought up and/or to clarify:
The doctor I had was and is rated by my western New York community and his peers as the best internist in the area. I do not blame him for any of the failings in my treatment, other than the fact he perhaps was ignorant as to the severity of the mental side-effects. As far as me being depressed is concerned, actually 99% of the time i am pretty upbeat considering the trauma my daughter and i went through at that time (i did not mention i was also a custodial parent of a 16 year old at the time, who is now, happily and productively in college and close to a degree)  Dr. C. did start me on an anti depressant shortly after I quit treatment, but it only made me listless and took away all my motivation plus it exacerbated my sexual problems- never good if you are a little depressed anyways ;)  I have since had another biopsy and aside from a little fattiness the liver is fine, enzymes only slightly elevated. The viral levels remain at pre treatment levels, have not increased thus far.
Did I read the warnings? ABSOLUTELY
I was assured that odds were I would only suffer the flulike symptoms, loss of hair (for a balding man not an issue!) and periodic nausea.
Rarer symptoms were sleep problems--
those he gave me Abien for-- i would sleep soundly for 8 hours..that pop up wide awake and paraniod/nervous and remain so until i passed out agaid 16 hours later. I think the abien just made my sleep sounder.
Those who recommend the treatment, i assume, are those in the "lucky " group that did not experience the rare side effects. i would never belittle what anyone on these drugs went through, but I can not imagine someone who went as clinically insane as i did saying they would do it again- especially since I believe I would have suffered more severe mental damage, pysical damage, and/or death had i continued.
It's funny, I play the lottery, but I am not the rare one there, why is it in the rare person sweepstakes I won rare devestating side effects? :)\
And remeber Dr liver- now you must say there are 2 people you know read every bit of small print before taking this med-- researched online, read every bit of info i could get-but
didn't talk to someone who took it.
And alagirl-
I sound distressed probably because I have been holding most of this inside for years--
people do not want to hear about this....
doctors reach for the prescription pad....
when i told my Primary care physician a year after treament ended that i could tell when toxins were backing up in my system (feeling somewhat like back years before when i drank to excess-really excess) but also like my organs were struggling to process waste and it wouldn't come out. He literally laughed at me and told me- no one can feel that>- I think I lost all respect for Dr Roche after that. He was all too happy to renew my Lorzepaum presciption, which i still take a couple times a month when i feel anxious, and charge me for a physical, but to actually sit and treat me? doctors don't do that any more. they are part of medical groups, they pawn you off on physicians assistants yet charge you the same. meanwhile my internist is now the head of a department in a major hospital in Buffalo, and has the most presitgious practice. My primary doc urges me to go back for another colonoscopy, or biopsy- but I am disgusted with health care in general. its ok to get anti biotics or to set a bone- but to know you personally enough to treat you properly? not anymore- and i have had the same doctor since 1973, when i was one of his first patients (i am 53 now)  
Excuse me if I vent, but it feels quite good.

[alagirl]

its ok to vent here.  And really, to say whatever you want to say about your experience and opinions.  And people (and I include myself here) will have different opinions and reactions to what you say.

Your second post is a lot more collected, with more detail, and makes it easier to respond to specifics - for me, anyway.  But we all make posts here (well, almost all of us at any rate) that are a bit scattered, so no worries on that score.

I understand that you had a bad experience with your internist over your treatment issues.  It is my opinion that any doctor who is not sitting down and spending time with you to get a complete picture of your life isn't really serving you that well though, even if others consider that physician to be intelligent and competent.  For me, a doctor has to be intelligent, good at what he does, AND concerned about me as a person, or I find another physician within that specialty.  And you can refuse to be seen by a PA.  I do it ALL the TIME.  I just say, I want to make an appt, and I ONLY want to see the doctor, so please make sure you are scheduling me for him.  

I do get that you feel you are finished with organized medicine.  But I would urge you not to be so quick to throw out the baby with the bathwater.  Viral loads don't always correlate to the level of damage in the liver, and enzymes can likewise be low with higher amounts of damage.  

A lot of us have found, through bitter experience, that we really need a hepatoligist, a liver specialist, and not an internist or gastroenterologist, to oversee our liver care.  There is at least one hepatologist at U of Buffalo, and others here who are familiar with your part of the country could speak about other hepatologists in your region who are quality physicians.  It seems like it would really be worth your while to at least get an assessment on your current state of liver health by an expert in the field who WILL give you all of the information.  Too me, too much info is never a bad thing, and it would be nice for you to have a current biopsy.

Also, there are some ad's that are so much better than others at minimizing sexual side effects.  Different ad's work better for different people dependent upon brain chemistry.  You don't have to be terribly depressed to be able to appreciate a good ad that works for you sometimes - plus, don't they make those great little blue pills for guys now?  ;)

I understand that some people feel more uncomfortable with prescription medication, but sometimes you need to do what you need to do for yourself in order to feel better.  Its not like you're married to the prescription you try.  

I'm glad you came and stayed even after our various posts - including mine.

[comeagain]

I´m not saying I have had it as hard as you but the big differens between you and me is is that my horrow experience went away and was exchanged to amazing positiv once.

I have had the disease 35 years and suffered a lot from it in decades.

But let me tell you if I hadn`t got rid of it, talking about both the mental and the physical parts here I would never had treated again.

Good you wented lots of healing in that I think.

God  bless I´m gonna pray you gonna get well.

ca

[fretboard]

Read around for awhile, there are other ppl on this forum who have had unpleasant experiences going thru tx.  You're certainly not alone in that department.  What happened to you was defintely a bad experience that would freak anyone out.  At any rate, I hope you feel better venting as I know I always do.    later

[desrt]

I don't know when your two treatments were, but as of October 2002, depression/psych problems were the first side effects listed(not the most probable but most dangerous) and I was sent a large print version of the package insert to read two weeks before starting. It even quantified probability of what type of psych events were possible.
Sadly, I agree with your estimate of the number of people who don't bother to read what it is they're putting in their bodies.

[copyman]

Sorry you had trouble with the treatment but I do not think what happen to you is the norm. Sounds like you had some mental problems that the tx drugs brought out. you sound like a perfect canidate for anti D's. Hope you feel better soon.

[meNtoby]

Wow Randy, glad you found the best hepper joint around and posted your story.  That was an amazing read, I thought my eyes were going to bug out of my head.  How absolutely frightening that had to be, and strange as it seems, maybe you ARE the lucky one, to have recognized your own mental frailty before it got the better of you.  It sounds like a very close call to me. I'm not a parent, but I was thinking that your child's well-being must have been a big motivation for you to keep it together and make the right decision to stop. I hope you keep searching for answers so you can regain your quality of life. You sound intuitive enough to get there with or without the help of medical doctors.  Good luck to you, and buy that lottery ticket, it is your time to win!

[aptec]

To randy1499

As background to what I'm going to write, I'm in week 19 of a 24 week protocol.  I've lost about 5kg in weight, I'm covered in red blotches and itch all over.  I have chronic fatigue and insomnia.  Yadda, yadda, yadda.  In short, this treatment is a b*tch.

So, while not wanting to detract from the strength you showed in attempting tx at all, you don't come across like the most stable of people.  You say at the time you were the custodial parent of a young girl, which it's easy to imagine happened because of some relational upset which in turn carried its own psychological baggage, and that you had a history of drinking to excess, which also probably contributed to your apparent instability.  To blame tx for your mental health problems may be to miss the wider cause/s.  

Further, to express disgust for "health care" in general because your doctor doesn't "sit and treat" you, or agree with your non-specific intuitions concerning the build-up of toxins in your body, gives me the impression you're someone who's angry because you can't get all the hand-holding you want.  Why was it you who won the extremely bad side-effects lottery?  If it's a million to one chance SOMEONE has to be the one - it's extremely unfortunate that it was you.

To advise people to use this type of tx "as a last resort" is irresponsible - there IS no other resort.  Without this treatment people die from HepC.  Is it easy?  Hell no.  Is it perfect and risk free?  Hell no.  

[Kristina538]

I'm sorry you had such an horrific experience.  I can relate as I almost 'lost it' in the first month of tx through anxiety.

Not only were the sx's coming on strong, but I realised that my medical team was far from 'holistic',  and that the PegIFN is far from 'streamlined', and some sx's were far from recognised.    The first thing I had to do before getting my meds was sign a 'waiver' acknowledging that I was aware of the risks (um - yeah right....);  then the nurse told me I was going to be 'challenging';  then I started researching.  I was also shocked to realise that my General Practitioner did not feel confidant to play an assertive role in my tx plan.

I did tx in 1994 and it was hard enough, but throw in a more damaged liver, a stronger pegalated IFN and especially the Riba, and I agree, that many medical teams are simply not up to date with what their patients may experience.   However, it IS a relatively new tx, and followup studies are still being done on sx's.   Because HVC is becoming an epidemic, the heppers of the world are starting to cost the medical systems big $ when our disease progresses.  

We've had discussion on this site before about 'in-house tx' for the first month..... It certainly is a very solitary journey, with it's (sometimes)  terrifying curve-balls, which is why this site has become such a life-saver for many of us.

I contracted HVC through IVDU in the early 80's.  To me personally, it's ironic that I am injecting the 'cure' and am being challenged again to 'live through' an experience which is once again showing me what I can endure chemically, mentally, and physically to hopefull rise a little spiritually.    If my liver deterioriates further, my challenges will have only just begun.

I too, have a 16 year old son, whose love gives me motivation.  I would have found it difficult, however, if my partner had not been here to take much of the responsibilities in the first month, and if I had been alone with my son, I think I would have had to make better arrangements.   I'm not saying that it is the tx, by itself,  that made it difficult - it was a combination of shock, anxiety, chemical sx's, personal adjustments and the dissolution of the denial I had become used to about my state of health.  

When I die (if it's of this or any other slow debilitating illness), I will have similar adjustments, chemical imbalances and personal problems.  (and I'll be a very upset angel if I get struck by lightening 2 days after obtaining SVR !!!)

I hope and pray you get the support that you need and welcome to the site.  This is a great place for becoming as empowered and informed as you can be, to assist you on your journey.    

[Trish77]

I have to say that when I started treatment back on Feb. 29/08, I was full of bravado and determination, lots of swirling swords and fight the dragon talk.  While I'm still very gritty and determined about it all - I am at Week 32 after all, I'm in for the duration and hope for the grace to take me to the end - I have learned a great deal as I have gone along.  I've had side effects lately that have been very sobering to me that give me insight into what CAN happen .. one thing to read about it and another to experience it ...  and being put on an anti-psychotic drug to control my mood swings was sobering as well, particularly when I considered the possibility that I might cross the line between being able to trust my mental stability or no. For me to even be on a drug like that and accept it is not a scenario I even remotely considered.  

Right now I'm at my most critical point with regards to the various impacts the drugs are having on my physiology and the book is still being written.  And yet on the whole I would say that my treatment experience has probably been better than I was afraid it would be. I have decided to get all the way through treatment before doing my final "lessons learned" session though... I've learned it ain't over til it's over.

If anything, I would have to say that reading about treatment is one thing.  Going through it is something else entirely.  There is a certain amount of psyching up that you do and the positive thinking process you put yourself in to prepare that perhaps blunts you to some of the reality of what you CAN go through.  You can only prepare so much.  The rest of it is diving off the cliff and going through it and having a good medical team in place that will respond adequately...and being as prepared as you can be yourself to respond to situations that are hazardous.  And sometimes, it's to pull yourself off of treatment if necessary.

In the end ... I think treatment is like going through life.  You make the best decisions you can at the time weighing out all your own risk factors and situations and then you go with it and hope for the best.  Nothing comes without risk .. whether it's waiting to go through treatment or deciding to proceed with early stage liver damage.   Nobody ever said life was fair or reasonable...and there are no guarantees.  All we can do is give this our best shot regardless of what decision we make with regards to our Hep C .. and try to understand that that's what each of us is trying our best to do in our own way.

What a helluva decision to have to make.  Praying for a vaccine some day and a better cure.

Cheers to all.

Trish

[nygirl7]

"Many treatment side effects can be lessened to some extent by helper drugs like procrit and antidepressants."  


I agree with everyone here.  Unfortunately in this world it would be great if doctors took the time to do all the work and advised us of all the sides and possible cures for them but they just don't always do it.

It's our responsiblity to do a lot of work here and to learn all we can.  My body, my disease, my treatment.  maybe that's not fair but it's just the way things go.

Learning as much as I could about the treatment beforehand didn't make treatment a breeze but it made it TOLERABLE.  I kept fainting until I got the procrit. I couldn't sleep until I got the Ambien. I started an AD a month BEFORE I started treatment so I never got any of that part of it.

You see..............we are not downplaying the "otherside" of treatment - it's just that most of us found the solutions to manage them. Rather than just complain we were proactive in our stance and then found it possible to get on with treatment and be cured.

I treated for 72 weeks. Not always easy. Not a fun ride. But it was doable.  Without the knowledge that I learned from the guys in here I would probably sound just like you.  I KNOW for a fact I would not have been successful in my treatment of this disease.

But by being proactive I have been cured now for 20 months.  It was worth the effort.

[nygirl7]

My T-cell count was quite low, and we reduced slightly my dosage of ribovirin, keeping the same injections of peg-intron.

PS All the dose reductions pretty much guaranteed you would not be successful in this treatment.  Had you a better doctor - you probably would have resolved all of the side effects, not dose reduced and been cured.

Dose reductions are the worst most last resort thing anyone should ever do.

By the way you can't sue SP - all of these potential side effects are well listed in the inserts. It just goes to show how important it is to read the literature that they give you at the pharmacy and to follow up with a good doctor. Neither things that you did.

I am however sorry that you are in such misery.  Please find a good therapist as they will probably be able to help with some of the mental issues and anger. Anger isn't good for anybody.

[DixieCups]

I was diagnosed in 1998. My only symptom at the time was constant fatigue and my liver functions were SLIGHTLY elevated. I researched every forum and web site available DAILY for an entire year prior to treatment. Since PEG was still in the final stages of clinical trials, there wasn't really anything out there concerning the lasting after effects. I sought out a very compationate and highly recommended Gastro who happened to be part of the trial data collection. We sat in his office for 2 hours while I read and we discussed each and every possible horrible symptom I might endure during treatment. He was very familiar with treatment side effects and since my liver biopsy was stage 1 grade1 and my VL was 200,000 we decided to go ahead with a high dose PEG and Ribovirin Combo, He felt I had a good chance of knocking it out in 6 months. I'm geno type 1a, apparently data was showing a 75% success rate at that time?????
I settled in for the fight and held on tight. I figured I had a good chance of winning. From reading other posts at the time I'd say I was hanging in at about a 7 on a scale of 1-10. Took the anti-depressants ( required in clinical trials)  and was lucky the suicidal thoughts were kept at bay.
Unfortunately I could not work any longer and had to use my personal long term disability insurance.
After the 1st round I had a 2nd biopsy showing minor improvement, but VL was 800,000.
My Dr. advised I rest my body for 6 months and start round 2. He felt 2nd time would do the trick and I was a tough cookie back then, so why not?  This time symtoms not so bad, or maybe I was just used to them. 6 months into the 2nd round, my LTD Ins. literally pushed me through to SSI. They did all the paperwork and got me approved. Now I'm on medicare and the assigned primary Dr. stopped all treatment in the 10th month. It took approx. a year for the drugs to clear my system.
Now here's were the real problems begin......
Soon after the meds cleared, my VL jumped to over 1 million!
I started having severe headaches. The 4 day in bed can't  move, speak or think head expolding kind. My neck and shoulders get so tense I can't even wash my own hair or do daily house work. My muscles and bones ache severely, more now than while on treatment. My joints literally lock up and I can't move. My mind races like I have 20 people in my head all screaming at once. I can't sleep. I get confused, I constantly use the wrong words. Lately I have difficulty remembering what I am doing or can't say what I'm thinking. Forget reading a book, I have to re-read the sentences over and over. Yesterday seems like years ago. My family and friends think I've lost my mind. I think Cybil has taken over. I can be happy one second and screaming and throwing things the next, and I know I'm doing it, but can't control it!  Depression is setting in deeply now.  What is sex drive???  It's been so long I can't remember was it is. The last experience had to be cut very short because I didn't have enough strength to keep going.
In the last 4 years my Thyroid has bounced up and down, my ANA levels have fluctuated, my blood amonia levels have been 4-5 times above normal and my RA factors are elevated. Potasium levels are practically non existant and my blood pressure is so low that 90 over 50 is a good day!  I have lost 60 lbs. in 4 months and later gained 35 lbs. in 6 weeks. My skin is always dry and itching and I am always dehydrated.
I am easily stressed and now prone to panic attacks.
I've been to Neurologists, Osteoporosis & Rheumatology Specialists, other Gastroenterologists and just recently a Hepatologist.
I've been hospitalized 4 times in the last 3 years.
All of my liver functions are and have been normal, but my current VL is 2,800,000.
Every Doctor I've been to insists these problems are not related to any possible damage the Interferon may have caused!  They tell me there are no studies showing these latent side effects.
Well HELLO people, just read the messages posted by real patients experiencing the aftermath of treatment.
My boyfriend was diagnosed in 1998 also. His VL was over 1 million back then. He opted out of treatment. and is showing the same signs of fatigue and a few aches and pains as he did back then.He actually still has a life and is going strong. His VL has increased over the years, but no where near mine. He vows never to go on treatment, especially after watching my health go so far downhill since my treatment ended.
I think the Interferon weakens the all over health of those of us with  geno type 1a. That stuff is actually POISON we are putting into our bodies. I did it twice as advised by my Gastro!
Now I feel like I have the body of an 80 year old and no life at all!
I just turned 50.  Five years ago I was riding my Harley, walking 4 miles a day and dancing up a storm. I did all of my own yard and gardening, kept a spotless house and did a lot of volunteer work.
I still take daily walks, but down to 1/2 mile. I try to keep moving and do what I can, but as I said earlier, just folding a load of laundry takes every ounce of energy I have.
Sorry for the rambling on, but believe me when I say this : " It has taken me all day to put these thoughts into words."  I have read & re-read this  ten times to be sure it made any sense.
The bottom line, in my opinion is.....DO NOT TAKE the Interferon unless you are already close to dying. If you do, you'll feel like you're dying after it's all over with. NO ONE TELLS YOU THAT!!!

[DixieCups]

I did not mean to offend you or anyone else. I'm sorry.
I just realized how important it is to join an online support group.
That was my first attempt. I've been so self involved with my problems for so long, I've over looked the fact that people are actually dying while waiting for a transplant. I just really want everyone to know what can happen if they go into treatment when it really isn't warranted or urgent. I have spoken to several people in small support groups locally that say they felt their overall health deteriorate after treatment ended, especially the non-responders who weren't that sick to begin with.
I just think everyone has a different set of circumstances. There isn't a "norm" to go by with this epidemic. You can ask 10 different doctors the same question about Hep C and get at least 6 different answers. Not everyone researches or reaches out on the web. A l ot of us are confused by conflicting info, especially when it's comming from our doctors.
Anyway, again I'm sorry for being so in-delicate. I wish you wellness and hope to gain your strength.
DixieCups

[Marc1955]

Randy – Sounds like you had a horrendous experience. I see a highly qualified internist in Baltimore and I can tell you that no way is he competent to oversee the combination therapy. Luckily he referred me to a research hepatologist.

I'm in week 37 of 72. I've had horrendous stretches but now I'm feeling pretty good. Here are a few suggestions:

1. Exercise if you possibly can – six or seven days a week - to exhaustion. That will help with the stress.

2. Consider regular visits to a massage therapist. You will feel so much better.

3. I am also regularly seeing a chiropractor. I know a lot of people think this is bunk, but straitening out your system gives you more energy and will help you feel more positive.

4. Once you've done all that – Cialis. I hadn't had sex for almost six months but now I'm glad to be active again. (Oy, is it expensive!)

Good luck. My only issue with this thread is that it dwells on the negative. I know venting is very important, but I gotta believe there are things you can do to make yourself feel better.

Best wishes.

[comeagain]

After my first treatment although relapsed, I felt I had some real strengt in my body for the first time in 25 years and it was an awesome feeling.

I´ve been having cronik lowerback pain and a discinjuri for more then 20 years, last 15 years I have hade bone pain thought i had developed bone neoplasm or something, also been having severe fatigue for longer then I can remember.

And guess what my lower backpain wasn´t the disc injuri my fatigue wasn´t that I was lazy and the pain in my joints, muscles and bones wasn´t old age. It was HCV.
So this first unsuccessful treatment has given me more then half of my live back thats why I´m doing it again, only been doing a biopsy after first tx and it was grade 1 stage 0
still dont hesitage to treat again because I dont wanna be an weak old sissy anymore.
I´ve already been that for 25 years thx to HCV.

ca

[desrt]

Most of us aren't up to exercising to the point of exhaustion 6-7 days a week while on treatment. A brisk walk for 40-45 minutes three times a week can help to adjust your serotonin levels.

[Mr Liver]

It was during the latter part of my second round of tx that I first saw a BB warning on my insert for IFN. That was around August 2002.I do remember that at the start of my 2nd round the psychiatric problems had been moved to the top from their original mention of the old 3X INF tx but had yet to receve the dreaded BB warning. ML

[Marc1955]

Dsrt – Couldn't agree more. The only reason I said what I did is because Randy is not currently in treatment and did not complain of fatigue. It sounded like the issues were mainly anxiety and stuff like that.

I am in treatment and I exercise regularly. There's no question you need to be careful and take things very gradually. I've suffered the consequences when I pushed things too hard. But exercise is a great antidote for whatever ails you. (So are massages btw).

[Upbeat]

It boils down to quality of life or quanity of life.  I choose quality.  I am in my 60's have had the virus for over 30 years and I fell great.  Why take the chance with TX? The odds say less than 50/50 to clear for Geno 1.  For some reason people forget that the vast majority of us will die with the virus not because of it.  Just the way I look at it.

                                                                                                                   Ron

                                                                                                                  

[scarredliver]

i was a non responder 5 years ago, after 12 weeks of treatment instead of going down my viral count went up so my doc stopped my treatment.
i had PEG and Rib combo and the side effects were bad that its hard for to get up in the morning.
this year my primary doc referred me to a diff. gastro specialist and started my tx last sept.5, i have genotype 1a, 1,200,000 viral count. what amaze me is that i have no sideeffects at all, i had a slight fever the night of my first tx but i was still able to run with my dog the next day. and thats about it. i still work 6 days a week, 8 to 12 hours a day.
i run everymorning w/ my dog and workout at night 2 to 3 times a week.
my wife was so worried because she thought that my tx is not working because i don't have any sideeffects whatsoever. i went to my doctor monday oct.13, for my lab results after 4 weeks of treatment. my viral count went down to 6980 and my doc said that i am an early responder and may be  UND next month, but he advised me to finish my 48 weeks of tx.
THREE THINGS that help me the most:
1. my FAITH TO GOD ---- i pray and talk to him everyday.
2. my FAMILY ---------- my wife and kids support. my wife asked me not  
                to take Tylenol PM that my doc suggested in case i'll have trouble sleeping, instead of taking tylenol she gives me a massage on all my joints before she goes to sleep and it helps a lot, i think i only took tylenol pm 3 or 4 times..i don't really have trouble sleeping..
3. my DOG JAK ------------ he encourages me to run everyday. helps
                   reduce my stress and tensions....i love my dog ... he
sleeps with us.....................

vince
                  

[gdwill2u]

Your symptoms sound like ENLD and not side effects from treatment, I had many ofl those symptoms pre transplant and your post makes me wonder if this is what is wrong with you.

Make an appointment with a hepatologist or a gastroenterologist and see if you have any other issues like low platelets and a swollen spleen.

The mental problems you describe (brain not working right, not being able to read because I couldn't remember the story line from one page to the next etc.) were very similar to mine, but I knew it was caused by high ammonia levels.  

It might be time to see about getting on the transplant list.  All of my symptoms disappeared after my transplant and I feel fine.

Good Luck,
Bob

[mommaglow]

I am like you, My husband an I camm my Dr "Mr. blow-sunshine-up your-***". I read all the possible side effects- and was told not to worry I would have no problem, I am young, healthy, and newly contracted the disease. HA! I have gotten every side effec t and have been completely misreble for 6 months- and yes some days I would rather die then keep up tx, but the truth is I have been SVR since week 3 and if it came back I would do it again. My husband and I have not had sex since the start of tx (thank God he loves me) becouse of no sex drive. I do not know how long the sideeffect will haunt me- but the truth is that at leas\t right now I have the ability to watch my children grow up without worrying about worrying about dying. I am so sorry the tx did not work and your Dr was a jerk for having you keep at it when you were non-responsive.

[apache1]

Well thought i would give a run down of my tx experience, so far.

First shot got me on edge, it gave me excess energy.
Within an hour I felt like running around the house.
Now I know what to expect, although that energy on shot night, has seemed to fad, as the wks go by.

1st week, noticed something strange.
The small roll of what i thought was fat directly below my ribcage disappeared...
poof, gone.
Flat all the way down.  
I had not lost any weight either.

Now keep in mind i have run 3-5 miles, 2-3 times a week for years, till tx.
I have lifted for years 4-5 times week, till tx. At one time in my life, I have done 300 crunches twice a day for months....
could never get that roll to go, had it for decades...along with hep c

That was no fat roll,  maybe my swollen liver ?

Peg and riba fixed that for me, in 1 week.

I never had any real pain from 'the roll', but now it seems like my abdomen is more flexible and feels more trim...if that makes any sense.


2nd week,  the rash or rough skin area i had on my back for years and the dermatologist could never figure out, is gone.


3rd week, the brown spots that I started getting on my arms a couple years ago that the dermatologist could never figure out, are almost all gone.


4th week got my UND  <50

4th-5th week my vision started getting better.
Let me explain.
Keep in mind I never had glasses and always had 20 20 vision.
About 2 years ago my left eye stated giving me trouble.
When looking at a excel spread sheet, the lines looked curvy in some spots, sometimes.
Went to eye doctor and after many tests and pictures with dye injected, they said i had a leak in my macular that had healed. Eye Dr said there was nothing they could do, but said the good news was I still had 20-20 vision but could use some reading glasses. Thru the next couple of years the eye problem would come and go, more come than go. Well ok, figured I am getting old.
Well guess what, yup, gone now too, not 100%... but much much better.

As for sx, they have not been to bad for me,  bearable and manageable imo.

Headache once in a while. Maybe a little fever in the start of tx.

Had deep down bone aches in my legs the first 4 -6weeks, mostly few days after shot when I got in bed. Not bad pains, just it was there, very manageable to me.
Might have something to do with my ANC being lower by almost half from pre tx. Still at 1330 now, so dont need neupogen yet.

Been more fatigued than usual, but again not to bad. I don't feel like working out or running most of the time, thats for sure, except right after my shot.?
oh ya, now i have gained 8lbs since tx started, don't work out hardly at all anymore because of tx, but the roll is still gone.  

There is a slight haze or light fog from the tx meds, but can see right thru it, and over all, my feeling of well being is much better and feel much healthier now than I have in 15 years.

Got 14 more weeks to go, up to now, things have been ok, hope they don't go bad like so many i read about.

Oh ya got this little rash or bumps bout the size of a nickel, that comes and goes on my left elbow, that started few wk ago. Its not really a problem ...yet.


8th wk, had a sensitive VL test,
heptimax <5 UND


10th wk, realized I had another sx,
F A S  
...fat a$$ syndrome
Gained weight, no longer do my 32" pants fit right.  

No curvy lines in excel for a couple months now.
Its been years since I can say that my eyes have been this good.



Some of my projects have been put on the back burner, but have not missed a day of work, and get all my responsibilities done on time.

I've been very lucky, compared to others I read about with bad SX,
If  FAS is the worst sx I get for a successful tx
I consider myself very lucky.
Are there any more out there like me...or am I the exception ?

Well thats my horror story guys...to me, maybe more like a miracle story.

apache1

[nygirl7]

"F A S  
...fat a$$ syndrome
Gained weight, no longer do my 32" pants fit right. "  


hahahahahaha many of us got that syndrome too - for me that is the ONLY lasting thing about the side effects of treatment and I hate it (yeah my thyroid died but big deal I take a synthroid every morning and that's that).  After being skeletal all of my life it's one thing that I hate...........but if it saved my LIFE I'll learn to deal with it.

Mostly like we all say treatment is DOABLE for most and FUN for none.  Certainly the risk of HCC is one reason to look at treatment as necessary and do it and then move onwards with life.

People should not be AFRAID to treat and many of the posts in here do tend to do that.

Some people are just not as strong as others and do have difficulty.

But you know that others, as hard as it gets, just fight through it till the end because it's in their personalities not to complain just to fight through. You just gotta know your true self and go by that...in the end you are the ONLY one who can control the way you face treatment (or don't).

[jdwithhcv]

"fat a$$ syndrome
Gained weight, no longer do my 32" pants fit right. "

Good one - I got that too.  Never was skeletal and now not at all.  Also got CRS (can't remember $hit) and my thyroid tanked on me (hence the enhanced FAS!) but I cleared that horrible virus.  Next week I'll go for a PCR, three months post-tx.  I was RVR so if I'm still clear I'll take that as a pretty strong indication that I will SVR.  Tx was tough but it was worth it.

For me there was never any doubt about treating this fast and furiously.  I was already on my way to the transplant list when diagnosed (Stage 3) and the idea of HCC is enough to make me try whatever they've got to stave that off.  (Sorry, already had cancer and have NO plans to go there again - if you think this tx is tough just try chemo and radiation!)

Maybe its the Irish in me, but I just couldn't give in without giving hep C the fight of its life.

jd

[scarredliver]

my wife didn't believe me when i told her that everytime i take a shot i feel more stronger and more energy that i used too. she said that's so opposite on what she read in the hep c forums.
i'm on my 7th week of tx and still feel better w/ no unusual side effects.
i still run everyday.

[wklaw]

I went on this website because I am scheduled to begin treatment on 1-8-2009. I am a trial lawyer and have blocked out every Friday for the next 6 months so I can take the shot of Pegays Thursday night and then the pills 2 times a day.

After reading this thread I am more confused than ever.

I was diagnosed in 1994 during insurance physical. I have always been in good shape, 6 ft 180 and job or walk very fast 5-6 times a week 5 miles a day and have done so for years. My ALT/AST was always normal from 1994 until 2-2006. I took liver biopsy on 2-5-2006 and for the first time the blood test I took one day later showed my enzymes were above normal. I continue to believe that it cannot be a coincidence but my doctor says otherwise. My liver biopsy came back a 1 for fibrosis and inflamation (inflammation) and it was read by 3 experts and they all say it showed very little inflamation (inflammation) and minimal fibrosis.
My "titers" have been consistently under 300k and currently are at 110k
My last blood test showed 61 ALT and 37 AST, which I am told is now back to the high end of normal.
My doctor tells me that there is an extremely high chance that I will clear after 30 days (I am geno type 1b) and that if I do there is a 90% chance I will be cured and can stop treating after six months.
--
I have never taken any anti-depressant drugs and have declined the offer to begin prior to treatment beginning.
--
After reading these entries I am now thinking that since I am in good shape (I am 56 years old) that maybe I should wait until Vertex 950 or another medication is approved (I have been told by 2011 Vertex should be approved). My doctor has had me take liver spleen scans every 18months and they have always been normal.

So what do I do? What advise could anyone give me because I am terrified. I have a general belief that the only meds you should take are Milk Thistle, Omega-3 and Vitamin C which I have been taking every day for 14 years now!!!! So what guidance can you guys give me.

[YuK]

Do the research, everyone is impacted a little differently.  I'm early on the Tx (8 wks).  I feel very bad, my blood work is bouncing around.  But, I want this gone, if possible  My brother completed the Tx with just a lttle tiredness.  He did get a little emotional but because he was aware of all the Sx's it helped.  I actually took a class, recommended by my dr.  Oh, I changed dr's early on because I wasn't happly with his experience.  If you do the research and read the posts you will get a good idea of what is expected.  It helps.

[granitekonig]

I'm in my fourth week of tx. My gastro told me to take 800mg of Riba and said my side effects would be less, but I want this to be successful the first time around. I'm taking 1200mg - and that's something I'm doing as a result of being on this board and educating myself. It comes down to this: There is a right way to do everything. The thread starter obviously did not have his/her ducks lined up before deciding on something so important.

[oldhepper]

Since I just joined this forum, I may be a little late in responding to the original poster of this thread. That said...

What most people don't understand is that many doctors, including gastroenterologists and hepatologists, are not up to date on HCV. It is, after all, STILL, one of the "silent killers". Another non-understanding is the fact that some (probably all) pharmaceutical companies PAY some doctors to prescribe some medications.

For this reason, just reading the warnings and all literature included in the prescribed medications just won't do it. Unfortunately, some unethical doctors will actually encourage heppers to do tx no matter the problems affecting the patients during or AFTER tx. We are brain washed into thinking an M.D. is a sort of God... which, of course, is highly horrible. They are PEOPLE with the same prejudices as others.

My original doctor, a very good one, btw, told me that the biggest percentage of heppers are drug using, alcoholic sluts (male or female). This was after I lamented the stigma attached to having HCV. He did not treat me as such because I was able to pinpoint the cause and time that the dragon slipped into a syringe going into my vein during one of two blood transfusions.

My point being; we cannot denigrate a hepper because he/she TRUSTED the doctor to do him or her NO harm. All we can do is be compassionate and empathetic and try to warn others BEFORE harm is done.

[Bali05]

Randy,

Thank you for your post. It is very sobering for people like myself who are thinking
about taking Interfon to kill this virus.
I do not understand how reading the warnings of possible side effects on the
package makes any difference. Any drug we take today comes with possible
side effects so what can we do about it ? Nothing, either you have to take or you
do not. I come more and more to the conclusion it is very critical to know when
to stop to avoid debilitating permanent damage.But how can you know that
on your own while going thru it and which doctor will know this and not just
push the protocol for the protocols sake ? The whole warning label thing is
just for legal purposes anyway. How do helper drugs or antidepressants ect...
change the fact that Interferon can have devastating permanent sx  ?

[desrt]

It's called 'making an informed decision'.