no treatment options

[hawk1971]

Hi I'm new here and I have had HEP C for about the past 20 + years, now I'm 38. STUPIDLY I did NOT do treatment fearing the side effects but have always been under a liver specialist's supervision. However, 2 years ago I was doing so well that my liver speciallist sent me back to my GP and they didn't inform me of a slow platelet loss over the past 2 years and it has gotten out of cotrol TOTALLY. Unfortunatley I have moved about twice and changed doctors and the last 2 GP's didn't even LOOK at my platelets at all nor were they worried about it. So, now with my new doctor I have had to push through 3 specialist and finally have a great specialist but no treatment plan. I cannot do any interferon treatment because of my low platelets (now 43,000) and have just found out from my Fibroscan that I have the beginning of cirrhosis. Great! My doctor wants to find out why I am destroying platelets or not making enough etc.. then depending on the why I may be able to enter a research project that is for people with cirrhosis and they are trying to reverse liver damage. I don't drink ANY alcohol, go to a Nutritionist who has me on a liver friendly diet and take Vit C, Milk Thistle and am now trying MANGOSTEEN. I am depressed as I feel that time is ticking away. My other stupid doctor told me I would have to wait for a liver transplant in about 20 years or when it finally craps out but that wasn't comforting at all as if my plateet count goes down too low I can't even have surgery to have a new liver as I could bleed to death. Anyone else with a cheer up story to tell? I need some inspiration. thanks

[evangelin]

My husband had his platelets go down to the low 40's several years ago. (diagnosed with cirrhosis in 2004) and he took HR's supplements and they have stayed in the 60's and 70's since then. There is no way top tell if this would help you or not as everyone's experience is so different. After 15 months of TX, his last platelet count was 79 , which is really high for Joe.  I also gave him high doses of melatonin which I read about on the Life Extension Foundation website.  I only gave the melatonin while he was on TX and it appeared to work...the best I could tell. His platelets took no plunges during the 15 months and tons of interferon/riba.  I wish we could have found a way to keep his hemoglobin up because that got really bad.
  I had also read that shark liver oil keeps them up and we took that for a while but I read something that worried me and thought  it could be harmful so we quit.  The melatonin (10 mg at bedtime most every night) caused him to very groggy in the mornings but that seemed to lift after some coffee.  Cause and effect is pretty distorted during TX though...he slept most of the time anyway so grogginess was hard to gage. Even a normal 3 mg. dose of melatonin might help a bit.  It is cheap and generally considered safe.  There was an article some time back that indicated it might even have some antifibrotic effect.  Nothing more has been reported that I've heard.  
Best wishes,
Ev

[Bill1954]

Wow, it sounds like you got caught waiting, huh? Once in a while HCV accelerates like this; it normally takes as many years as you are old to advance to this point.

I’m not sure about this, but couldn’t they transfuse platelets in order to perform surgery? I’d imagine they would be able to intervene and facilitate transplant surgery if platelets were the main issue.

Have you been evaluated for transplant yet? Have they given you a MELD score?

It’s unlikely you’ll qualify for any interferon-based treatment with platelets at 43,000; this is pretty low; IFN by itself can cause them to lower even in otherwise relatively healthy patients.

There are other, more efficacious drugs in clinical trial right now; the STAT-C class; that is, but they will be used initially in conjunction with interferon/ribavirin. Do you know what study the new doctor is considering you for?

With compensated cirrhosis, you might be in reasonably good shape for many years; we have a number of cirrhotic patients in there that have been Child Class A for ten and fifteen years, so don’t think you’re necessarily on death’s door right now. Maybe they’ll stop in and give you there thoughts as well soon.

Be very careful with anything a nutritionist suggests in term of herbals and such; be sure to clear all meds and OTC stuff with the liver doc first.

Best of luck to you, and welcome to the discussion group—

Bill