Just Had My Second Appointment

[btsmith]

   I just had my second appointment (in attempt) to get my treatment moved up.  The doctor told me that if I get cured, I won't feel much different than I do right now.  Is this true.  Still itch, still tired, still out of breath?  Boy I felt low walking out of that offfice.

[HCA]

I have not cleared yet,so can't comment.
I  recently bumped into a guy who cleared Geno 1a with bridging fibrosis-he told me he feels the same two  years post SVR as before he treated-fatigued!
He had put on a lot of weight
I have read here of others who don't exactly feel reborn and restored,so I have lowered my expectations accordingly.
I think those with little liver damage and were asymptomatic may fare better.

[fretboard]

Everyone I know personally who has tx'ed has seen improvement, except for one who was a non-responder.  I don't know many, maybe 5 or 6, but they're glad they tx'ed.  If I didn't have the osteoarthritis thing going on and symptoms of my liver being taxed when I was still using back in 2002, I might wait if I was younger.  Heck, I'm gonna be 55 next month, so I better get on the stick while I can.  Oh I was seeing a nitwit of a GI and he told me that I may not clear and that my quality of life would go downhill b/c of my past history  Turned out he don't like txing recovering addicts, glad I found out and decided not to tx under him.  Makes me question the results of my biopsies in the first place.  When I first started seeing him I didn't want to tx, I was happy with the "wait and see" approach.  Some doctors are really screwed for feeding their patients negative information, even if that is honestly their opinion.  The way my GI told me that was I asked him point blank, I said everytime I talk about tx, you try to talk me out of it.  He got a constipated look on his face and told me that BS about my past. lol  I always wonder why they do that, in my case I know it's b/c my GI didn't want to tx me.  Glad I was able to erase all the negativity he shared with me.  good luck

[Jacob43]

I don't understand the stages, etc.  But sounds like some good advise above.  Just wishing you the best.  

[jmjm530]

Stage 3 is not cirrhosis, it's bridging fibrosis.

If indeed the latter (briding fibrosis), most docs would have you treat although some might offer the option of waiting in lieu of newer treatments especially if the bridging was just beginning to form (early stage 3 or late stage 2).

My suggestion is to first get your staging correct. If your biopsy is current (under 3 years) then have another pathologist read the slides. If your biopsy isn't current, you might consider another one.

Are you seeing a hepatoloigst (liver specialist) or a gastro? Given your situation, I'd highly recommend seeing a  hepatologist -- and even if you are seeing one, getting a second consult might be a good idea.

Whatever you do, don't put things off at this point. Figure out what's in your best interest now and then act -- be it to treat or to decide to wait.

[btsmith]

  I have bad liver damage, stage 3,  genotype ll, I already have cirrhosis,  I guess treatment just keeps me alive huh. I have been messing with this for 5 years now.  They say if I would have had it done 5 years ago there wouldn't be much of a problem, but the doctor that took the biopsy didn't seem to be too worried, so I wasn't.
btsmith

[jmjm530]

Of course, from reading comments from those threads, not all suffer from post treatment sides (or for a lengthy time post), but it cannot be determined beforehand who will or won't.
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That's really the point as I see it. It's not that most will have these type of lingering side effects or 50/50 or a minority. We can debate that till the cows come home since no definitive studies. But what is clear is that a sizeable number of people do have signficant problems both during and post treatment. What's also clear is that it's impossible to determine in advance whether you will be one of the lucky or unlucky ones. So, at least as I see it, why take the chance if you have little or no liver damage. But of course, others have their own opinions because after all this is a free country, at least for now :)

-- Jim

[Jacob43]

Just read through a couple of these threads, and will read more later. (But Wow!)

It is just my opinion,  those with normal or little damage to their liver (such as myself), and not presenting with symptoms from the HCV itself, that it would be in their best interest to wait. Of course, from reading comments from those threads, not all suffer from post treatment sides (or for a lengthy time post), but it cannot be determined beforehand who will or won't.  Each day, I feel more comfortable with my decision to wait.  Even if there were no plans in starting a family, I know now I'd continue to wait.

[jmjm530]

BT: but I just can't see eleminating a virus like hep c from your body and not feeling better.  
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It's not elminating the virus that's the problem for some, it's the treatment drugs themselves. You might want to spend an hour or so going through these past threads:

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629

[alagirl]

Hey there!  I was in Texas (kind of a big mistake apparently) visiting relatives for a month or so.

[jmjm530]

Based on my experience and what I've read here, your doctor is correct in the majority of cases. In fact, many feel worse after treating. That said, if you have significant liver damage then successful treatment can hopefully prevent cirrhosis. Do you know your genotype? Have you had a biopsy? How much liver damage do you have?

[nygirl7]

I found a lot of comfort in the fact of knowing that my liver wasn't going to poop out from exhaustion from being constantly attacked by the virus.  Peace of mind helps you to feel a LOT better but honestly I never knew I had the disease or was already at stage 3 liver damage. Once I found that out I had no choice but to try and get rid of it for good. How I felt really was a moot point because if I didn't try to treat it and kill it, it would have made me crazy with worry.

I know that's not the answer you were looking for but - many of us didn't even know we had it before we were diagnosed so it's impossible to say and it does vary greatly by person too.

Really no set in stone answer for this one!

[btsmith]

    ala long time no hear from.  I think it is like you say, it is an individual thing but I just can't see eleminating a virus like hep c from your body and not feeling better.  I think all virus's (sp) would cause some kind of discomfort and then when it's gone you feel better.  A cold is a vius, I thnk.
btsmith

[alagirl]

Some folks here have felt improvement after tx for chronic hepc.  Mremeet comes to mind as someone who says he has felt a lot of improvement.  This is a good topic question for others who are SVR.  I was an acute patient so I felt MUCH better after tx because my acute symptoms were so bad, but I can't speak personally to how a chronic patient would feel tx (and the recovery time for the tx - my recovery time was difficult and took about five months before I was truly back to myself, but I had a more difficult treatment).