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Long, long term side effects from Hep C tx
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Long, long term side effects from Hep C tx

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?
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Avatar_m_tn
Sorry to hear that you had a terrible experience treating. Hopefully with more time things will get better.

Thanks for mentioning at end of your post that what happen to you is out of the norm. Although most people suffer some symptoms they are no where near what you went through.
Best of luck
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Avatar_f_tn
I am sorry to hear about your experience. These drugs are strong and everyone is different. It sounds like you got more than your share of side effects. You really had a hard time but managed to get throught it. Having beaten hep c may insure that you have a future you might not have had otherwise. Everytime I think of the side effects I have and the fact that maybe some will not go away I think of those folks on this site that need and are waiting for a liver transplant or who have had one that are really having a hard time. This doesn't minimize what you have gone through, just reminds me that beating hep c really matters. Take care and please keep us posted on how you are doing.
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1491755_tn?1333204962
Sorry to hear this and I feel for you. May better days be ahead.
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Avatar_m_tn
I am really sorry to hear that. Like said before 'you got more than your share of side effects'. Having a strong heart & faith & more positive attitude& never give up spirit, and the better days will be there for sure!!

Best wishes
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148588_tn?1405199001
The black box warning has been on the treatment meds since at least 2002, including a large print version I received from the manufacturers before I ever received my first shipment of Peg-Intron.
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Avatar_n_tn
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
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Avatar_f_tn
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
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Avatar_m_tn
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.
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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....
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163305_tn?1333672171
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.
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Avatar_n_tn
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
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Avatar_m_tn
I had hoped for a happier ending.  

Still.... good to see you, hear from you.  You were always very well respected, informed and a valued member.

willy
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Avatar_f_tn
I am staying out of the forums at the moment as I have to concentrate on work. I wanted to quickly add my voice and support to this thread by letting you know that I also experience long-term side effects after treatment. The most disturbing ones to me are the effect on working memory, long-term memory formation, prioritization, motivation, and personality. Following treatment I have never been able to exercise at pre-treatment levels despite efforts to build back up. I had to quit my cycling club.

I took IFN/RIBA for 14-weeks about 3-years ago. Genotype 1, had HCV for about 30-years. Very healthy before treatment. I was specifically told that all side-effects go away after treatment except for a few very rare cases of thyroid dysfunction. For that reason, I think it is important to speak out about side effect persistence. I didn't achieve SVR obviously after 14-weeks. My doctor pulled me off treatment due to poor drug response and side-effects.

Before treatment I had a very active life. Work, no matter how complex, was a breeze. Now I have to work 10 times harder to do the same things. In fact I am not sure that I will ever be able to work at the same level again. I make mistakes that would never slip by me before treatment and I struggle to get things done.

As for the PTSD idea, I agree. Although, PTSD at least is very treatable even just with talk therapy. One of the contributing factors toward developing PTSD is a lack of recognition and social support relating to the traumatic event. Bottling it up makes it worse. It has been a relief to hear the very similar stories of others and see that we are not so incredibly rare.

I was only on treatment for a short time with standard dosing but it still affects me years later. It seems as though sensitivity varies from person to person. It makes sense to think that more exposure to the drugs carries more risk, but I don't think that is the whole story. I have heard of bad reactions after less exposure than I had. I do not know whether it was caused by IFN, or RIBA, or both together but I am not the same person after treatment. I grieve for what I have lost. It is a constant battle to stay on top of the symptoms. Some things seem to help a bit with the cognitive deficits - supplements, nutrition, and moderate exercise. That leads me to think that although 'fixing' this is unlikely maybe some help could be forthcoming if only we could identify what is actually causing it. I long for the medical community to start addressing this.

Best wishes to all people battling HCV.
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Avatar_f_tn
Glad you stopped by to tell your story. I am on week 13 of triple therapy with incivek and am deciding whether to treat for 24 or 48 weeks. I am doing well on therapy but am starting to get sides from the Riba I believe that are scaring me and am trying to legitimize stopping at 24 weeks which still has good odds. maybe just as good as 48 for someone like me who has very early cirrhosis. All liver functions are good except the platelets run low which is a sign of liver damage. I feel as if I am made to feel weak because I want out of taking this poison, when I feel like it may be taking a bigger risk do an extra 6 months with the sides I'm getting now. Mostly anxiety, shortness of breatth and constant weakness. Of course more sx, but they are the most I worry about right now. I guess all in the end it a flip of the coin, which way things go for any one individual and an individual choice. I don't understand the tx to you fall mentality I find on this board sometimes. I know some people are very sick and need to do as much as they can but I don't think those standards are for everyone and people shouldn't be made to feel that there choice is a weak choice. Sorry I'm rambling I'm trying to make an important decision for my life and my future an it was helpful to me to hear you story. Thanks again.
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Avatar_n_tn
Your assesment is right on.  It mirrors my life prior and after my tx almost to the letter.  I think the worst part is the social anxiety, panic & depression.  I used to be a high energy exec. and very good with people at work and socially.  I loved my life and my work.  I NEVER ecperienced panic or social anxiety. That is not the case now.  I prefer to isolate and avoid social interaction whenever possible, especially presentations in front of exec. groups, which in my business is critical.  This dramatic change has severly damaged my once thriving career prior to the tx. This is very difficult to accept, yet accept I must.  I miss the old me. Life and work were a joy. Now they are a challange at best.  I'm also 57 and concerned about my financial future, and our family's stability.  It doesn't look like I'll ever be able to retire and the thought of struggling like this for years to come is daunting.  I participate in many support groups which does help.  In fact, it is the only place I feel safe now.  I wish I could attend more than I am able to, due to my work schedule.  Maybe as more time passes, so will my dysfunction.  I wish I had some legal recourse to pursue. I would bet the makers of these drugs and my health care provider(Kaiser) had full knowlege of the possibility of these devestating, life changing effects, and I would like to see them held accountable.  Many lives have been permanently damaged by this tx. I've heard it from everyone I know who went through it  I believe I will look into this possibility for legal action. I'll keep you all posted.  Hang in there my brothers and sisters. Warmest Regards - rpvgar
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Avatar_n_tn
It sure sounds like you fit the same profile as a bunch of us.  I appreciate your commentary on the changes you have had to deal with.  For me, this social anxiety, and the associated panic attacks are very disconcerting and a bit scary.  It feels very 'physical' in many ways, as opposed to psychological.  I can feel my body changing when an anxiety attack comes on, and I almost feel a jolt of adrenaline, or even mild electrical feelings throughout my body, like all the switches and synapses are misfiring or flaring up.  It is a very uncomfortable bodily feeling accompanied by general fear and anxiety, and also involvement of spine and ribs.  My gait becomes stiffer, and I even feel some vertigo.  All of this comes on from time to time for NO apparent reason.  It just hits, and then I am really beside myself for hours, or days.  My latest 'anxiety attack' seemed to last for over a week.  Even sleeping was painful and fitful.  Of course I also have rashes flaring up constantly, mouth sores, joint pains, tendonitis, and lots of fatigue and brain fog.( all after 10 years SVR!)  Its not a pretty picture, to be sure.  If my clients could know how I am feeling many times, when we meet, they would be speechless.  I have learned to 'fake it' pretty well.  But that's no fun!  Thanks for your additional insights and your personal story.

DoubleDose
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Avatar_m_tn
http://www.huffingtonpost.com/2011/10/15/cancer-ptsd-symptoms-survivors_n_1008990.html

"Post-traumatic stress disorder (PTSD) could develop after surviving cancer, a new study suggests.

Research published in the Journal of Clinical Oncology shows that a third of survivors of non-Hodgkin's lymphoma still experience PTSD symptoms long after they were first diagnosed with the disease. In fact, the PTSD seemed to get worse as the years passed. "

=========================

No commentary, just wanted to pass it along.  I've no idea whether this fits or is applicable, but would note a few commonalities, both from the article and from a few responses above.

best,
Willy
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1711889_tn?1308345903
It's tough how many of us have noted the same issues after tx but the most recent information by experts doesn't deny that some people can have problems but that within a couple of years they should be mild enough as to not interfere with work- Good luck all with hcv. I haven't tried the new stuff yet but plan to after the first of the year. after spending the past year being "holistically " treated for   my fictitious chronic lyme disease my hepc has flared up, running daily fever with severe fatigue, etc- sound like I don't have to be detailed but one of the reasons I've hesitated is indeed because of the side effects i experienced before post treatment that continiue but it would be so great to be cured. I'm so tired.
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Avatar_f_tn
Have you considered joining a trial which is interferon free?  They are recruiting for a study named "Quantum" in Florida.  You may want to look into it at clinicaltrials.gov/  Of course, it would be based on the actual condition of your liver.  
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Avatar_n_tn
Good article.  I think the PTSD can develop both from the HCV diagnosos, but even more so from dealing with the intense 'shell-shock' of tx for long periods of time.  I think maybe some of our post-tx symproms may be PTSD related, while I think the more 'autoimmune' related manifestations are probably caused by the changes in our immune system driven by the interferon...since that is exactly what it modulates..and 'messes with".  
We may ultimately need multi-modal post-tx treatments that address both the physiological changes in our bodies, and the stress/shock related PTSD type changes as well.  There certainly is a lot going on here!!!

DoubleDose
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Avatar_n_tn
Sorry about the typos......  that's "symptoms",....and diagnosis.......
fingers don't do what the brain tells them.............
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1140115_tn?1348499315
Hi folks,

I've removed some off-topic posts.  The original poster is asking for support and information regarding the side effects of the treatment he used, so let's stick with that topic.  Thanks!

Claire
MedHelp.org
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1431734_tn?1333920149
i am so very sympathetic that u should suffer so after tx.
i do however have to be sure that the positive side is represented too. although i only treated for 6 mos with soc, i had the usual sx during treatment. knowing that there was a potential for psychiatric sx i asked doc to double my effexor. this mitigated a large part of the anxiety issues. all my sx were gone within a few weeks of treatment. altho i have yet to go back down to original dose on effexor. i have been virus free since week 4 and i am past the 6 month mark. the albatross and dragon are gone and i feel like a new person. i wish that for every one here. i have no advice but i do not want folks to be scared away unnecessarily. do your homework especially if u have underlying issues with depression/anxiety and be sure
your doc understands these issues. best to all, babs824
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317787_tn?1373214989
While the black box may have been on the commercial products
My trial came in plain boxes with my patient name and number
I was not aware of the black box warning until after 2009
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148588_tn?1405199001
That's interesting. I guess pharma Cos. consider the black box warning to simply be a legal CYA  and that you've already signed away any legal recourse for damages when you joined the trial.
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408795_tn?1324939275
PTSD?  Sorry to hear that.  Did you happen to have any psycho social difficulties, depression, anxiety prior to starting tx?  Any mental health related issues in your family history?  Glad you're here and you brought up this issue as it's refreshing to hear the good, bad and especially ugly of tx.  Inquiring minds need to know.      
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The current tx's (even triple therapy) are not a one size fits all matter and for anyone txing you really gotta be aware of what's going on with you mentally and physically and how much you can take.   I know that's very difficult to measure as most people txing just want to kill HepC at all cost.  That said, I see this thread as a great opportunity to learn something new.  Keep in mind that normally HepC is a slow moving disease and if you truly have time to wait to tx then maybe you should.  Just saying, maybe in the future they (researchers) will fix the one size fits all criteria and make things easier and better.  At least that's what I hope.  For people who have gone thru tx and feel alot worse than they did prior to tx all I can say is I feel for you and no matter what, keep trying to get better one day at a time.
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Avatar_f_tn
Apache....I wonder if you've had your testosterone checked.  Your malaise sounds similar to someone else I know here and that was his issue, that the Interferon had significantly lowered his testosterone levels and it needed to recover.  That's treatable and I wonder if you've looked into that.  Interferon can cause some physiological damage and those things need to be dealt with on an individual basis.  Good luck to you.

Trish
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Avatar_m_tn
i took the tx and it was successful, i'am 57 can i get that testosterone treatment and is it healthy to do what ever tx it is ? frespirit57
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Avatar_m_tn
That drug should not be on the market, you mean to tell me that this is the only way to get rid of this Hep C ? i heard that europe has a Dialysis Machine, i took that stuff for a 11 months, i was undetected 30 days after starting tx and 2 1/2 yrs later still undetected, so what, i was better off with the hep C, i will never promote that drug, i'am not that mean. i would like to find a way to get it off the market. frespirit57
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