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Hepatitis C: Post Treatment Issues Community
292 Members
Avatar universal

Are we ever gonna have some resemblance of the life's we used to have?

I did Alfa2b treatment for hepC (Interferon, Ribivarin)in 03.It destroyed me.SEVERE PTSD/DEPRESSION.Pain, confusion,loss of eye sight,short term memory gone.not a half hour goes by that I don't think about check-in out. But I won't. I have kids. Gotta stick it out for them.The thing that breaks my heart.And makes me weep. Is the other posts,by other victims. We're all the same. Same side effects,same everything. And the one thing we all say. If I'd have known what it was gonna do to me. I never would have taken it. It's not right they did this to us. Their had to be some way to get some compensation. My heart goes out to all of you. I'm here to lend an ear also. Thank you
5 Responses
1321487 tn?1385298279
Nine years post treatment.  My story is almost identical.  They poisoned me. I would rather have hepc. Im 54 and my life will never be the same.
Avatar universal
Also damaged by the Interferon/Ribavirin treament, Nearly 5 years ago and not been well since. Am not sure
what can be done to help heal. Have tried so many things to no avail.
1 Comments
Hi Bruin and everybody struggling to recover.
I was unaware of the number of people who have had such similar experiences after finally getting cured.  For so many years I thought SVR would end all my troubles.  I think for the younger folks whose first treatment was Harvoni that may be the case. However it’s  not over for a lot of us non responders who braved months & months of interferon, ribviron, and other accompaniments .  

It’s just exasperating to try to tell a doctor about what I know about the effects of interferon.  I know I sound like an old woman who thinks she has all these disorders and she’s just experiencing old age.  

I find that antidepressants like Cymbalta help with aches & pains.
Recently my doctor recommended a “medical food” called Luma which (to my surprise) seems to be helping me in a big way with my mood and energy.
It’s new, but you can google it & get to a site to learn about it and order it.

I am  encouraged to keep trying to untangle the mess HCV & interferon left behind.  I appreciate your stories and your sharing what you have learned about the lingering effects of interferon,   I will visit again to exchange stories & info.  Thanks.
683231 tn?1467326617
I treated three times with interferon based treatment firsttome I think was about 1995 last was in 2003.

Was diagnosed with cirrhosis in 2008. I was finally cured of  hep C in May 2015 with 24 weeks of Harvoni and ribavirin.

While all those interferon treatment were rough, personally I’ve had no lasting effects as far as I am aware. At 60 with cirrhosis still going strong.

So sorry you all are having a difficult time post treatment what have your doctors said have they been able to help at all?
2 Comments
Have you had a biopsy post SVR. Im to chicken to do it. But im certainly interested to see if its gotten any better.
I am guessing you are asking me.

I had 4 liver biopsies iver the years I knew I was infected one every 5 years. My last one was in 2008 when I was diagnosed with cirrhosis.

Before I treated in 2014 with Harvoni/ribavirin for 24 weeks my doctor did a Fibroscan test Incase my insurance wanted more recent evidence of cirrhosis. My scoreat that time was 27. Cirrhosis starts at a score of  14. Two years post treatment my Fibroscan was 33 but I have heard since then I should’ve fasting and I was not. Planning on doing a Fibroscan again this spring. I plan on fasting for this one. ;-)
1321487 tn?1385298279
Im looking into ketamine infusions.
1 Comments
I just read about this that they are using ketamine infusions for treating depression. Hope it helps
1491755 tn?1333204962
I did it seven years ago. I definitely lost a step. But I’m not sure I would have made it another four years for a better treatment.  And I had geno 2 so all the new meds were for geno 1.  Hang in there.
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