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?

[Willy50]

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. "

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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

[DoubleDose]

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

[rpvgar]

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

[streamline569]

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.

[OdinLovesLife]

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.

[Willy50]

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