Having trouble 6 months after finishing treatment

[stella154]

Hi! I finished therapy for hepatitis c, genotype 1a, about 6 months ago.  I was taking peginterferon alfa-2a and ribivarin for 6 months.  I will find out soon if the virus is gone.  My question is about how I should be feeling at this stage.  I have extreme fatigue almost all the time.  My depression is worse than ever even though I take 2 different anti-depressants.  I have pain that makes my quality of life intolerable.  I told my doctor if I had the choice again I would choose not to do the therapy.  My doctor is sympathetic, but doesn't know what is wrong with me.  I have lost all zest for life and have to push myself to do anything.  Will this ever end?  Does anyone have any suggestions?  I can't live like this.  I am only 32 years old.  I welcome any thoughts or suggestions.

[R Glass]

Even my GP is pizzed off about it. He said, “They do this damage to you with no follow up and dump you back on us to try to figure out how to fix the damage they caused.”

[stella154]

Thank you SO much to everyone who responded to my post!  I was hesitant to participate in anything on-line but it feels really good to know I'm not alone, even if there isn't a perfect solution.  I really appreciate all the ideas and well-wishers.  Thank you!

[tashka]

I would really like to know the proportion of patients who experience permanent side effects after this treatment. I would really like to see the study/extensive survey addressing this. Fear of permanent side effects is what primarily keeping my husband from attempting to treat. He feels great right now, and we have good fulfilling life together. He definitely would not like to end up in the condition described above. The hepatologist, that we consulted in the past, told me that he never heard of permanent side effects after interferon. He said they don't happen. This doesn't make me very comfortable, because I read different things on this forum as well as on the other forums. Obviously, information he has is incomplete.

[DoubleDose]

I think the comments on this thread point out the very real issue of lingering, and long term side effects after completing tx, that so many on the forum are so quick to either dismiss, or rationalize away.  I really believe that if you looked at 500 post tx'ers, about one year after completing therapy, you would likely find 50% of them or more complaining of the same issues noted by the posters in this thread.  It seems extremely obvious to me that there is an issue with the after effects of interferon in many people, and the symptoms seem pretty similar from one person to another....extreme energy issues, pain syndromes, difficulty thinking and functioning appropriately, sleep and anxiety problems, etc.

  Some doctors (small 'd' in this case) may tell patients that it is all in their heads, but they are plainly and ignorantly WRONG!  This post-tx, post interferon syndrome is becoming pretty common, and is being discussed regularly on HCV boards like this.  My only real issue with all of it is just this:  The tendency of the HCV Medical community to ignore, deny, and to use other means of just plain 'sticking their heads in the sand, in order to avoid really studying this issue.  I cannot believe that supposedly professional, objective, and caring doctors continue to dance around these problems, and try to convince THEMSELVES that it is all either imaginary, or just a very small percentage of post-tx'ers.  We need honesty, and straight forward reasearch on this particular problem...NOW!!!  Let the Pharmaceutical companies stay out of the way on this.  They don't want to know about it anyway!

DoubleDose

[paen53]

I agree with the above posts about the importance of having your thyroid checked, even 6 months post. My thyroid tests didn't show it went hypo until my 6 month post labs and I was then started on a low dose of Synthroid.

Also, follow through with the above info on drug interactions with the two AD's you're taking. It's not uncommon to take two at a time, but if they're not working, dosages may have to be adjusted, or the brands changed. On tx, I went through several before we found one that worked well for me.  

Have you had any PCR's since you finished tx? That long of a wait would have been hard on me, so maybe this could be contributing too, you know, being in limbo.

Hope you find something that helps you feel better soon. Pam

[kciav]

So sorry to hear this. Many of your symptoms sound familar to me.

My son (23) has had lingering side effects, and he is currently taking 2 anti depressants and anxiety & sleep meds also.  Things are definitely worse than before the treatment and things don't seem to be getting much better after either. It's already been 1 1/2 years  since the EOT and we are still waiting for a big improvement. I have not given up on a better recovery, for my son and everyone else.

Our Dr. at 6 month post treatment said well you are cured and basically any problems you think you have are all in your head. He repeated this treatment philosphy before and after, that there aren't any long term side effects.  It seems as though he believes this or doesn't want to admit otherwise to anyone. very sad.

Wishing you a healthy future, sooner rather than later.  Good luck with your viral test.