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?

[babs824]

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

[Claire_MHModerator]

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

[DoubleDose]

Sorry about the typos......  that's "symptoms",....and diagnosis.......
fingers don't do what the brain tells them.............

[DoubleDose]

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

[curiouslady1]

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.  

[flo56]

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.