hep c Treatment

[chiefdag]

I was put on treatment 6 1/2 yrs ago i went thru the 48 wk treatment and it didnt get rid of the dragon so i asked the doc if a year and a half on it would do it seeing that it gets rid of it while im on treatment he agreed that it may work but to my dismay it did not so he put me in a trial for 48 weeks and that didnt do it. so i waited then i got a call from the trial nurses who said they had new meds and a new trial so i agree so lo and behold out of 300 plus patients me and 1 other guy got the placebo so thats another 48 weeks. at the end of that we were offered the real medicin so i took it and after 48 more weeks we cleared the virus and now after almost 2 yrs it is still gone.
My question is I have not felt right ( dont sleep, i am exhausted all the time, no energy, etc) and was wondering if the meds have done this to me? im physicaly in decent shape but i feel malaise all the time

[libzo2]

Hi, I call it fried brain.  Others call it brainfog or even chemobrain and interferon syndrome.  It is real.  I think it is the price some of us pay for reaching for the stars to be cured.  

My executive funtions have deteriorated severely.  I wander aimlessly at times and forget to remember.  I read the same book twice and still can't remember its content.  Everything, i mean everything is overwheming.  I am hoping this will improve over time.  Please google "chemobrain" and many examples pop up.  It is the lesser of two evils for many.  I am not alone and neither are you.  

[ceanothus]

You are right about the drug companies not  telling all, but then I think there are a lot of things that are just unknown at this point. We are all the test subjects, even those not in studies, as in another 10-20 years the things we've had to do now will be seen in a completely different light. Some of them will no doubt turn out to have had regrettable long term side effects, but all we can do now is work with the best we have and hope for the best. After all, we do know a fair amount about the regrettable long term effects of not treating the virus.

I agree that you should be getting followed up on your liver health. It might have progressed to cirrhosis, which can cause pretty severe fatigue (I know because I have it). Your liver went through a lot, but if you avoid alcohol and live a healthy lifestyle it may regain more of its normal health over time, especially if it did not progress to cirrhosis. You are also right about the virus passing the blood-brain barrier, but so far no one knows much about the significance of this. We just have to wait for the science to catch up. Meanwhile, support taxes going to basic and advanced research - that's where much of the knowledge will come from.

[chiefdag]

My blood tests say my liver is working well and like i said the liver doc among other docs write it off as if nothing could be the cause and yes we are getting older but i shouldnt feel as if i were 80 lol
The meds do cross the brain barrier and i was wondering if they could have done some kind of damage to certain areas
My thyroid went crazy right after i was off treatment the last time and so i went to my pcp for it and he seen that it wasnt right so he sent me to a specielist who did some tests and they were all normal by the time i seen him so the nurses for the study were amazed that that happened because the thyroid normally goes crazy during treatment not after
Im just at a loss because i dont get any answers from my docs which leaves me angry/upset/confused and i wonder if im going to have to live like this forever. I also believe that the drug companies dont tell you everything that could and does go wrong
Thanks for the input

[Advocate1955]

The reason I asked about your stage of liver damage is that as liver damage advances, people do seem to begin to feel more symptoms such as fatigue, joint pain, etc.  So, 6 1/2 years ago you had bridging fibrosis, and 2 years ago you obtained SVR (congratulations by the way).  Did you have a second liver biopsy at any time between treatments?  I'm wondering if you know whether or not your bridging fibrosis transitioned into Cirrhosis before you obtained SVR.
My hubby developed symptoms of increased generalized fatigue as he transitioned from bridging fibrosis to Cirrhosis.  He has recovered fairly well from each treatment by the 6 month post treatment mark.  On the other hand, many people on the forum have reported extra hepatic symptoms from liver damage, as well as post treatment side effects that last longer than the 6 month recovery period.
I guess the bottom line is that I don't have any great answer for you.  I would recommend seeing a hepatologist and being evaluated so that you can know for sure that your liver is functioning well and maybe he/she can answer the question as to whether your fatigue is due to the liver damage that was caused by having Hep C, whether that liver damage may have reversed or improved, but you may be experiencing some longer lasting affects of treatment.  Since you were bridging fibrosis 6 1/2 years ago, you may want to be monitored by a hepatologist anyway, just to be screened routinely to monitor the health of your liver.
Just some ideas.  Maybe someone else on the forum will join in with some thoughts as well.
Keep in mind, we're all getting older too!  
Advocate1955

[chiefdag]

I had some bridging and the type was 1a
it was a tough time but i beat it at what cost  the docs cant seem to tell me and kind of not realy look into the matter
thanks for the reply

[Advocate1955]

Wow, you have really been through a lot.  What is your stage of liver damage and what is your genotype?
Advocate1955