Hep C treatment and kidney transplant patient

[Hope2689]

I was recently dx with Hep C with a  liver biopsy report showing mild actvity with focal mild periportal fibrosis (grade II, Stage I - II), GGT of 37, Genotype 2B, and a Hep C RNA by PCR of 5.2.  The big dilema is that I've had a kidney transplant about 12 years now and I don't want to jeopardize my kidney for HEP C treatment if I don't need to.  Can anyone lead me in the right direction as to where I can look up similiar cases.  My doctor wants to treat but with lower doses.  PLEASE HELP!!!

[LvdByGod]

i just have a small comment about being 2 of 4 on your test. first of all there "are" different stages of cirhosis. so you should find out if you actually have "cirhosis". they usually use a "meld score" for cirhosis here in the states for cirhosis staging, but i think there could be other tests as well, i'm not sure.

or see if that test was for the grade and stage of the "fibrosis"....something that comes before the cirhosis like john was talking about...

time to get it clear with the hepatologist.

nann, sorry you are having troubles,like the redness in the face and the h.prylori. it's hard to say what going off interferon could be doing to your previous problems...perhaps it was keeping those things at bay? i don't know?...but alot of folks feel lowsy after stopping tx. and then there's also all the fear to factor in..

you could do a search on h.pylori. it does cause stomach aches from what little i read and it can be related to cirhosis too...remember the interferon gets rid of the virus not necessarily the cirhotic liver...although some folks say it can improve after tx...others say no, it will just halt further damage...its one of those debates. perhaps in some cases it seems to go down a stage of cirhosis and in others no.

if you really do have cirhosis as you say then you should remember that going off the treatment doesn't necessarily mean you will not have some liver problems from your cirhotic liver...

this is all an "if", first thing to find out is if you do have cirhosis...

sorry so long...and scattered...just some of my thoughts...

sandi

[MrsOckert]

I don't necessarily think you might be receiving poor care or treatment because your low income.  While I do agree its possible, based on my experience and some other posts I've read so many dr's do things so differently.

I do have ins (not the greatest) and I think I would get the same care from my dr if I was destitute.  LOL  I asked him to do a 4 week PCR and he refused.  He only does them at 12 and 24 weeks.  We haven't even gotten to the discussion about post tx.  I do know of MANY people that have to wait 6 months post TX for another PCR.

[LvdByGod]

as to the redness in the face...it could just be from rosacea...and i did a tiny search but i could not find where that was related to liver disease or hep c. but i did find it can start up from stress...please read below all that can cause a flare up with rosacea.

http://www.rosacea.org/patients/materials/triggersindex.html

so if the stomach aches, and belching, nausea could be caused by the pylori and the redness in the face by rosacea then the things your experiencing could have NOTHING to do with hepatitus c comming back...

SO DON'T LOOSE HOPE...

PRESS THE DR FOR THE MORE SENSITIVE TEST...

AND TRY TO RELAX AND SEE THE DERMATOLOGIST ABOUT THE REDNESS IN YOUR FACE...

LOVE YA HONEY, PRAYING YOU'LL BE KICKIN THIS DRAGON IN THE BUTT!!!
CAN I PRAY THAT?

SANDI

[cuteus]

I always wondered how much HCV was influencing my renal function, I bookmarked this Oxford Journals article
http://ndt.oxfordjournals.org/cgi/content/full/18/8/1573

[DoubleDose]

In regard to the three weeks post-tx when you felt fine, and then began to experience symptoms that caused you to believe that the HCV was back....I think many of us can relate to that experience.  I have read numerous accounts on the forum, of members who were sure the HCV had returned, usually about two to four weeks after ending tx.

My experience was that for three weeks or so after ending a very tough tx of 18 months, I started feeling extremely good.    I felt like I did decades before contracting HCV, and had tremendous energy (even though still anemic), I felt clear headed, enthusiastic, no pains, high libido AND sexual function, motivated, and with zero brain fog, and zero fatigue.  In about three weeks everything changed, and I was hit hard and fast by the freight train....joint pains, depression, brain fog, lots of fatigue, drop in libido and function, stomach distress, eye problems, etc. I continued and still continue to test 'undetected', SVR. All of this has been blamed on post-interferon hangover...but I really wonder.  Why the three incredible weeks????  Why has it taken over two years, after tx, to slowly lose the distressful symptoms (which are still there, but just at a much lower level)???  

In the recent discussion regarding HCV persistence after SVR, I begin to wonder if there is some sort of 'viral rebound' shortly after ending therapy, which relates to the 'persistent infection' sites.  In other words, we all seem to be really SVR by all the PCR tests, but are we really eradicated.  My gut tells me all this long term 'hangover' stuff may relate more to HCV and less to the interferon.  That three week 'window' where I felt like a disease free 'kid' again is strangely a common experience to other SVR's as well. To me it feels more like a viral rebound...just not in the blood or liver.

I really have to wonder what that symptom-free period is all about.  

DoubleDose

[cuteus]

hum! I felt great for the first two wks, then that weird "crash" which lasted a day or two, and back to "normal" after that.  I did get the "flush" look for a while, but that too is gone. The only thing now remaining is the herniated discs and some pre tx joint problems but not too bad. Memory lapses have been quite frequent in the last couple of months. I just got another PCR to make sure, one yr post tx.  How much is just getting old, I wonder?
Keep an eye out for any studies researching and biopsing SVRs hepatic and extra hepatic tissue, just in case. It doesn't hurt to make sure. Since hcv is found in the CNS, maybe it shortcircuited things and it is irreversible? Once they get an extremely good HCV tx going, maybe they will be interested in recruiting the SVR, live ones, and test them thoroughly for HCV.