Anyone cleared cryoglobulinemia ?

I have hep c for 30 years, f2, grade 2, geno 1a  treatment naive.

HAS ANYONE BEEN TESTED BEFORE AND AFTER TX, AND CLEARED CRYO PERMANENTLY? I keep reading that it comes back very often, even after SVR.

I had a biopsy for the purpura and it was confirmed as vasculitis. My doctor had me test for the cryo, and rf factor.
We spoke today and he said that he still had not received the results of the cryo test, but was sure that I had it since I had confirmed vasculitis and rf positive. He said the test for cryo was not dependable (I believe that they do not do it correctly at this hospital since they took my blood and left it in the room where the blood where the blood was drawn which was not at body temperature). I will probably go to get the test at a different hospital to be sure.

I keep reading that people don't think this is serious, but cryo can kill you without warning or any symptoms prior to destroying your kidneys, entering your brain, or giving you a heart attack.

I can't find a lot of information about cryo, it seems rare, but I read that many people with hep c have it so I am confused. I believe that they are just learning more about the percentages of hep c people have it. Many doctors don't routinely test us for it, mine only did because I kept asking about the purpura and itchiness and my platelets where normal so it wasn't ITP

I really hope someone knows about this, I am not sure what hospital in the SF Bay area or Sacramento area has an expert Dr on this disease, but would love to get some suggestions,
Thanks,
Dave

[Fathom500]

I don't have a direct answer to your question but I have tested positive for Cryoglobulins, However My hepatologist said that it is not uncommon for people with Hep c to have traces of these proteins. He did not seem very concerned about it. He did not think it was a reason in and of itself to treat for Hep unless the symtoms (symptoms) were severe. I joined a support group on line but it was not as informative as Medhelp. I did however learn that roumatoligist (spelling) are the kind of Dr you want to see if you are concerned. It is hard to get info on the subject though. The kidneys are what you need to be worried about. But not overly worried. Kidney function tests are cheap. Heart attacks and brain problems are very rare. There is a test that can quantify the amount of Cryo you have. The cryos are an immune response to the virus. Heck for all I know they may be why I don't have much liver damage after all these years.

[spectda]

Thanks for the response fathom, My doctor seemed very concerned. Did you have any symptoms? The only symptom I have is the vasculitis/purpura. I read this was common. all my kidney functioning seems normal. Did you also test positive for RF? I am thinking of getting a second opinion.

[Fathom500]

I did not have an RF test. I'm thinking about getting one. I do from time to time get little red dots on the soles of my feet. Not many usually just one sometimes 2. They usually go away within a few days. Not sure if that is purpura or not. No other symptoms. I may try to find a rhuematilogist to get evaluated. I did have a C-reactive protein test recently and it showed no inflamation (inflammation). I may go get a sed-rate test as well. I'll keep you posted as to the results. I'll PM you my email address so we can compare notes, test results, and symptoms if you like. I too am concerned as to whether or not this is serious. Most likley not. But best to be informed and aware.