Relapsed

[sfbaygirl]

Hi everyone!  Haven't been around for awhile. Between the fire move in and out and being in the hospital twice for internal bleeding, I haven't been here much.  Hope you are all doing well. I found out today that I replapsed. My viral load is 6.5, which I think is high?  I am NOT ready to do this again. The ischemic colitis could have been caused by the interferon, which I stopped at 47 weeks, although I planned on going to 72 weeks due to my not clearing at week 12. I am not sure what to do now.  My energy is pretty low, but I got out of the hospital 2 weeks ago. I am depressed now, of course. I really want to dump my dumb a$$ dr and get the Gish group, but haven[t sent in the appeal to there rejecting from my ins.  I know if I were to do this tx again I would double dose, and do everything full speed, but I really am not ready to get back into it again. I have been so sick since tx that I can hardly go a couple of weeks without something happening. Not sure all of this is related to the hep C or tx. I had the fibroscan which showed stage 1 or 2.  I am 55 and I just don't know what to do. Anyone have some suggestions?  I have been away long enough to forget some stuff and know new things are up and coming. Are there vertex trials for relapsers?  Apprieciate any comments and HI to all my friends from the past and HI to all you newcomers!

LInda

[Valtod]

Linda, I'm sorry to hear about your relapse. Probably, you remember you and I started at  approximately the same time, both delayed responders and were supposed to do 72 weeks. You had horrible SX and stopped at 47 weeks... Well, I continued to the 72 weeks finish line with autoimmune SX getting from bad to worse in the last 3 months. Now 3 weeks off Tx, the SX didn't get better, the pain in the liver area really bothers and scares me, fatigue worse than any day during Tx, digestive problems I didn't really have before Tx, I feel my whole body is destroyed, my immune system in disarray and my liver more damaged than before.

If you regret you couldn't continue 6 more months, I start to regret I didn't stop when you did. Or even earlier - when I didn't clear by  week 12. Actually, I wish I never did this second Tx. If I could go back to Feb 2006, when I never had rashes or eczema, or  constant liver pain, or lungs that feel like punctured, and somehow I could get just for 30 min in my post-Tx body today, I'd NEVER start the Tx.

Yesterday my GP sent me for 12 different blood tests to see what's wrong with me. My AST/ALT are increased to the level of week 12 when I still had the virus, the total protein is above normal (for the first time in my life), monocytes and eosinophils are way above the norm, suggesting autoimmune disorder and /or HCV relapse. I'll have the results of my viral load by the end of next week. If it turns out that I've relapsed so fast after being UND for more than a year, in addition to being poisoned to a degree where I don't have any semblance of normal life, I don't think I'll be able to handle it very well. Frankly, I don't see how to deal with this bleak post-Tx reality at all.

During Tx, despite the depression and worsening SX, I was able to push further and further, week after week, only because I  was constantly dreaming about the proverbial "light at the end of the tunnel".  Well, now it seems the tunnel ends up in a meaningless and fractured horror movie of endless torture and body mutilation, directed without a script or sense of purpose and mercy.

So, if it's any consolation, 72 weeks of Tx by no means secure SVR, but for sure bring more severe SX and long-term post-Tx damages.

Val

[fishdoc]

I echo beamers comments.  I'm so sorry this happened to you.  It just seems like considering what we have to endure, we are entitled to be SVR.  One of these days someone needs to have a talk with the woman upstairs.  I truly hope better treatments are around the corner,
consuelo dos gatos (now its 4 cats!!)

[sfbaygirl]

Yes,  I see your point. about the sx vs. SVR.  It seems to work out here, doesn't it?  Won't it be a great day when our odds go up in the SVR department?  Vertex seems to be doing fairly well, perhaps in a few years we will see cocktails like with HIV that at least keep us going much longer. I knew the odds weren't great when I started. I knew the odds were worse when I couldn't extend. The longer we are here, learning about what those studies are the better odds we have I think.  I sure wish the best for you in your decision of which tx you will do.  It does seem like a real live **** shoot, doesn't it?

[Forseegood]

I take your point, but I've seen a whole lot of people with bad sides SVR here, and I just haven't seen a lot of people w/ hardly any sides SVR...I hate to say things like this, because if there are patients out there treating w/ no sides, I sure don't want to predict their fates...cause I can't...I just see things that are interesting...I guess one day soon, most people will SVr, the vast majority, won't that be a happy day!!!!

[sfbaygirl]

And how about us that have horrible sides and relapse?  I agree I have seen many here with no sx and no SVR, but also horrible sx an no SVR.  I guess it is anecdotal as we certainly aren't doing a study here. All I know is I had a 50% chance as a 1a and after no clear at 12 weeks at about 30% chance of SVR going 48 weeks. Has anyone seen a study on sx on tx meaning SVR, I doubt it. But it does seem to play out here a lot of the time.

[Forseegood]

I'm sorry, but I've seen a lot of words which are far more obscene then c-r-a-p go through the censor, that is about the most benign bad word there is!!! WHATEVER!!! LOL...