cryoglobulinemia

[garde]

I can't find the least thread I was in, so I have to start over.  Sorry.  

Anyway, I tested positive for cryo.  Had a liver biopsy last week. Waiting for the results.  I am seeing a Gastro and a Hepo.  The Hepo says I have to go back on mediciation to lower the viral load so that the cryo gets under control.  The Gastro says he does not think the inusurance co. will approve, since I am conisdered a non-responder to treatement (was on it 4 years ago, with no luck).  So, it will be interesting.  The Hepo says, if my liver biopsy shows a lot of worsening,then I need to be back on full treatment.  If not, then a lower dose of the treatment.  Of course, this is all just a temporary fix, sinc the viral load will decrease slightly, maybe give me some relief from my leg pain and vasculities, but once I stop the treatment, the viral load will go up again, and the cryo will act up.  Anyone out there have the same problem?

[cuteus]

4 yrs ago there was no approved pegylated interferon. your dr should make a case for the fact that there are better SVR rates with the newer meds, if in fact you were in the regular interferon treatment. If the dr is eloquent in his written presentation, he can get things approved. Maybe a different hepatologist could be more effective?
gl to you

[johnisme]

Hello, just wanted to let you know there is no doctors on this forum... good luck to you........John

[BostonGirl]

Hi Garde;
         I tested positive for cryo summer of 2004.( I think that I've had cryo a lot longer though ) I did 6 months of the combo tx, never completely cleared the Hep, but tested undetectable for cryo at 16 weeks of tx.

My Rheumy said not to get too excited though, about the cryocrit being at 0. She mentioned that once the interferon tx was stopped the cryo will come back. I am not quite 4 months post tx, so I do not know if the cryo came back. I pray that it will not.

I was told that even though I never cleared, I had the option ( in the furture ) don't want to think about those shots right now, but at some point, I could do low dose pegasus to keep the cryo levels down. I guess even if you do not have Hep C, interferon is one of the meds used for cryo. Hope this helps. (((( Sue ))))

[garde]

Boston Girl - thanks for the input.  I think this is the road  I will be going down.  Although I can't bear the thought of treatement again, I don't think there is any other choice. Temporary relief is better than no relief.  If it gets better for a few months, then I'll enjoy those months.  THen face it again when the cryo comes back.   I am very uncomforable and my life style is beginning to change.  My husband is kidding me about getting a handicap sticker so i don't have to walk so far.  (no way).    You mentioned your Rheumy...I did not go to one, I actually cancelled that appointment when I realized that this is really hep c related.
I'll be under my gastro or hepo for the treatment.  I don't know if the insurance will approve though.  

[garde]

I think I was off a year on my treatment.  I was on Peg Interferon.  This is what I would be going on again, or a lower does of it.  Hope to get my liver biopsy results this week.

[cuteus]

two tells is the fellow who had cryo and cleared it along with hcv, I can't remember all his stats, but I found that if you do a web search on the person's nickname, you get some of the old MH threads that might have his story. I think he did not clear with the first tx. Many people that didn't, have cleared with subsequent tx.
I hope your biopsy is good.

[BostonGirl]

You mentioned that you canceled the Rheumatologist's appointment when you realized that the cryo was Hep C related. Just from my experience > My Hepatologist was not really too knowledgeable with the cryo. I do believe she is a very good doctor, but has not treated a lot of patients with cryo.

If your Gastro is familiar with this cryo syndrone, then you will be in good hands. Otherwise, if he/she has not treated cryo prior to treating you, then you might want to consider possibly seeking an experienced doctor. I feel for you because I know it can be extremely painful & really slow you down. Good Luck with maintenance. (((((( Sue )))))))