Long, long term side effects from Hep C tx

[rpvgar]

I’m so happy I came across this forum.  I see that I am not alone in my experience.  Like many here, I suffer from long term side effects from my one year, combo (peg & ribo) tx in 2003 at Kaiser Permanente.  I am blessed… my tx cleared the virus, but it is a mixed blessing, because my quality of life has never been the same.   During the treatment, I became so violently ill my doctor took me off the tx for 2 weeks at the 6 mos. Mark, because I was so sick and emotionally unstable.   I didn’t want to have gone through the hell of the first 6 mos. and not finish, with a chance of clearing after 1 year, so I pulled it together as best I could to finish the year.  I was not warned about any of this prior to treatment, and had no idea what I was in for, and there was NO “Black Box” warning on any of my tx meds. I was able to work ½ days for the first 2 mos, or so, but then became totally dysfunctional and unable to go outside the house, let alone work.  For the remainder of the tx, I could make it until about 11am each day and then was in bed shaking violently for the rest of the day and most of the night.  I could sleep only a few hours a night, and as the treatment continued the side effects got worse. I experienced severe depression, anxiety, panic attacks, paranoia, insomnia, and some degree of psychosis.  I had never experienced any of these psychiatric illnesses prior to the tx. I was under constant psychiatric care and was prescribed every anti-depressant made, in max doses, in a vain attempt to control these symptoms.  I was also given numerous non-addictive, anti-anxiety medications.  I was also given very low doses of tranquilizers, which did help, but because of the (addict) stigma attached to having contracted the disease, the doses I received were too low to be effective for the awful panic and anxiety I was experiencing. I lost 50 lbs and was a pale grey in color.  I now suffer from PTSD, severe depression, anxiety and panic attacks. It has been eight years of this.  I still take multiple psychiatric meds, and I’m able to function at work and home, but that is the extent of it…  I am able to function.  The panic and anxiety I experience on the job has dramatically impaired my ability to  excel.  I know that not everyone has suffered or will suffer this much, but some may and should, at least, know that long-term trauma and dysfunction is indeed a possible “side effect”!  Is anyone else out there experiencing similar long-term side effects from this tx?

[DoubleDose]

I understand exactly what you are saying....believe me, and I share a similar background to yours....corporate executive for years, then a twenty year stint running a commercial consulting firm...and all WITH the HCV.  The post-tx experience for me, sadly, is one of much less success in the business, a tenfold decrease in focus, motivation, and just plain overall physical well-being.  I could list the many, many changes and symptoms, but I have done that, and we all pretty much know the standard post-tx list.  I really empathize with you, and I also wonder where it all will lead.  I work ten times harder now to do one fifth of the work that I formerly did.  Its a daily and a constant struggle.  My social abilities and desire to interact are way out of line with the pre-tx, HCV-positive me.  And, hey....of course I am happy to be virus free....but I never in a million years realized that success would mean being left with this horrible level of functioning.  Sometimes I think about sayings like ' is the cure worse than the sickness', and so on.  

What needs to be clearly emphasized for forum readers is this:   When we discuss post-tx problems, and long term after effects...this is an ENTIRELY different subject from the question of whether one should undergo treatment.  That is a purely medical decision, and has no bearing on, or relation to the fact that some of us have developed serious after effects from the tx.  None of us are trying to comment on, or discourage anyone else from doing therapy.  We are merely discussing our own particular negative outcomes from tx, and it needs to be shared, and ultimately recognized by the medical community.  I try to make this clear since it seems to be a real issue when we discuss post -tx problems with some people, and they want to twist the conversation into somehow our being "anti-tx", or causing others to be fearful of tx.  I just believe we need an open honest forum for discussion, and that the issue needs to be understood by everyone....and even those considering doing tx.  Having ALL the information available is important so that people are not surprised, or even shocked when these sorts of outcomes happen.

Thanks for sharing your story, it sure hits a chord for me.  I know your pain, and I share your dismay at the changed ability to work effectively.  One of the positive things about getting this issue known and well publicized is that it will only spur more urgent development of better, and less damaging therapies for HCV.  If all of us just kept our mouths shut...there would still end up being as many cases of long term after effects taking place.....knowledge won't change the outcome of using interferon for those who still treat using the current therapy.  Our discussion will at least provide support, and a sense of understanding for those who DO end up like us after tx.  Maybe some researcher or HCV medical group out there will become involved and even try to develop some sort of therapy to address our more serious problems.  The only way for us to find a second 'cure' is to get the information out there, and to push HARD on the medical community.  

I hope that you eventually see your symptoms level out and abate over time.  I am nearly ten years SVR and still experiencing a wide range of nasty stuff.....all similar to the first month after ending tx.  I keep fighting the good fight, and will keep trying to succeed in my business and family life.  I have never been a quitter.  Its just a very hard path to go down, and one I was totally unprepared for.  Maybe ALL the new tx'ers need to be fully aware that some outcomes are not too pleasant.  Going into it with a realistic set of possible expectations is a good thing...not a bad thing, I think.  Keep working at getting better, and let's keep the discussion open.  We need more input from members, and lurkers...and we need the medical community to take notice...and JOIN the conversation!!!!  Best wishes.

DoubleDose

[orphanedhawk]

My perspective is a bit different as I wouldn't be here typing if it weren't for a liver transplant.
Not everyone will get as sick as I did if their hep C is left untreated but for some of us, its a life saver.
However the side effects can indeed be very serious.
This is one reason why I am very excited about the new oral polymerase interferon free clinical trials. This may be the way to a better future of hep C treatment.

[apache1]

DoubleDose
4 hours
To: rpvgar
Your comment about PTSD is right on the money.  I have often thought how many of my post-tx symptoms fit entirely into the PTSD profile, and it makes sense.  The power of interferon can change your nervous system in many ways and may indeed bring about a severe state of PTSD after using these drugs for long periods of time.  Several other posters in the past few years on the forum have mentioned the PTSD after effect, and I have not really given it the consideration that is warranted.  I have frequent weird bouts of panic and anxiety, as well as many neurological symptoms that accompany the attacks.  I think my nervous system 'wiring' has been permanently changed!  None of this was anywhere on the radar for me before tx.  I am truly a different person, and I work very hard to compensate for all the physical and psychological changes...but in the end...its all still there...and it all affects my quality of life greatly...every day!!!   I still believe there are many of "us" out there that just don't really understand what hit them...and that have little or no access to information that would give them some insight into the cause of their problems.  I also really wonder if any of this is truly 'fixable' or if it is going to be our   permanent lot in life.  That is a terrible prospect indeed. Black box warnings or not, I honestly think that many of the HCV docs really either downplay the potential for long term after-effects, or completely ignore, and dismiss that potential situation.  I sure had no clue what might be in store.

DoubleDose



To: DoubleDose

I use to disagree with you. Changing my mind lately DD.
I've  been SVR for over 2 years now. Did an abbreviated 20 month tx.with only 800 rib. A lot less time and meds than most of you.

Now am realizing, I am different from pre tx days. Even with hcv for 38 years I functioned at a high level. Didn't even know I had hcv till a elevated ast/alt came back in an executive health yearly check up.They said stage 1 fibrosis.

The post tx changes came slow and very subtle. At first, thought I was imagining things, or having a bad day or bad week.
But now, my once extreme motivation is gone.
My energy level is almost non existent. My once thriving multi million dollar business is 1/5 of what it use to be, because I am not the same person any longer. Socially, I'm not what I use to be.
My desire and drive is... gone. Mentally, I don't like to admit it, but think I'm not nearly as sharp an executive as before. Decisions and executing them is difficult now. I use to thrive on those exec decisions and would logically figure out my best move. Don't know what happened now. I have multiple projects sitting on the back burner for 2 years now that normally would have been done in weeks/months.

Maybe its just, I'm getting old.
Don't get me wrong, I am 57,  take vacations, enjoy life, and all the good things that go along with it. Not blaming anyone but myself. Just saying I seem to not be the the same as before that first shot of inf. And I am just starting to admit it to myself now. Maybe i should just be thankful about my svr and except the hand I was dealt. Guess thats life.

Is this from tx... IDK. Is it from losing my long time HCV infection...idk. But the fact remains, I am different now after SVR and tx soc. I am on no medications, doctors say I am in good health, nothing wrong. God help us....

[lynda607]

Sorry to hear you're suffering.  Hope things straighten out for you.  
Must say, in my case many extra-hepatic manifestations disappeared after therapy and my quality of life has improved even without SVR.  I was well aware there could be long term-side effects prior to treating.

Hopefully, those treating with the PI's will have less exposure to interferon and there will be no need to double dose interferon, take high doses of ribavirin or go through multiple treatments.  Even though some people seem to experience lasting sx with only 24 wks of interferon, the majority do not so less is better in my opinion.

[streamline569]

So why doesn't anyone pay attention to the new studies that are coming out that 24 weeks of treatment is sufficient. I just don't get it, why people won't even consider that if you have a good responds why over treat if you don't have to. Here is the link and the study was done by vertex.

http://www.eurekalert.org/pub_releases/2011-09/uonc-2hc091311.php

[DoubleDose]

Your comment about PTSD is right on the money.  I have often thought how many of my post-tx symptoms fit entirely into the PTSD profile, and it makes sense.  The power of interferon can change your nervous system in many ways and may indeed bring about a severe state of PTSD after using these drugs for long periods of time.  Several other posters in the past few years on the forum have mentioned the PTSD after effect, and I have not really given it the consideration that is warranted.  I have frequent weird bouts of panic and anxiety, as well as many neurological symptoms that accompany the attacks.  I think my nervous system 'wiring' has been permanently changed!  None of this was anywhere on the radar for me before tx.  I am truly a different person, and I work very hard to compensate for all the physical and psychological changes...but in the end...its all still there...and it all affects my quality of life greatly...every day!!!   I still believe there are many of "us" out there that just don't really understand what hit them...and that have little or no access to information that would give them some insight into the cause of their problems.  I also really wonder if any of this is truly 'fixable' or if it is going to be our   permanent lot in life.  That is a terrible prospect indeed. Black box warnings or not, I honestly think that many of the HCV docs really either downplay the potential for long term after-effects, or completely ignore, and dismiss that potential situation.  I sure had no clue what might be in store.

DoubleDose