cryoglobulenemia info? thnx all for being here!

Been diagnosed with hep c /geno 2 for 30 plus years but only decided to treat this winter (started jan10/07 til June 07 )interferon/ribavarin on advise of family doc - never really had any bad  symptoms - other than I started to develop cryoglobulenemia- numbing of  lower legs.(neuropathy). Havent drank or done anything stupid since acquiring hep c- believe it was a tatoo I got in Brazil for $2 - Great Value!!!  Now I am learning how to deal with Hep c treatment. As I said at the outset- Sincerely thank you all for sharing your experiences- its been Great!!! Anybody know much about cryo or where I can find info- be appreciated. Apologies in advance for any  ineptness as this is the Very first time I have posted anything anywhere!

[Kit07]

Hi good question!  Have you been tested for cryoglobulins?  My understanding is that cryoglobulins develop when bits of hep c virus float through our bloodstream and are attacked by our immune cells. Together the cells and viral particles become large molecules that plug up our tiniest capillaries and cause arthritis or inflammation (vasculitis).  The molecules can lodge in peripheral vessels and cause nerve pain (neuropathy) or lodge in kidneys and cause serious problems (glomerlulonephritis).  There are other complications.  It isn't clear why our own bodies don't clear the immune debris, except perhaps that our livers are tired.  

I have read a few times now that HCV treatment drugs can reduce cryoglobulins and help alleviate symptoms even if SVR is not achieved.  I have read that cryoglobulinemia (the diagnostic term) is rare in hep c patients and I have also read that it is common.  I don't think it is very well studied.  Many of the publications appear in rheumatology or neurology journals.  

I think I had nervous system problems that were helped by the  combo treatment, even though I did not clear the hep c virus.  Gray area.  Here are two links:

http://janis7hepc.com/related_conditions2.htm#cryoglobulinemia

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17415652&query_hl=27&itool=pubmed_docsum

Kit07

[SnoWav]

I also had cryo symtoms (symptoms) before TX but they vanished a few weeks into TX and now a year post TX they have not returned even tho the C did .later

[oretiredone]

I have battled cryoglobulenemia with Hep C for many years.  Before treatment I had severe vasculitis leg rashes, swelling, pain from standing (and I was a teacher, so always on my feet), Reye's syndrome.  I took alpha interferon for 5 1/2 years(before the Peg interferon was developed) and then had a year on the combination therapy.  Interferon toned down my Cryo symptoms, brought my liver enzymes down to normal but did not clear the virus.  I had severe side effects from the combo therapy, but saw it through for the year.  After we stopped therapy the cryo symptoms came back, and I went back on Ribavirin alone.  If I stay on Ribavirin, it controls the vasculitis and I have virtually no side effects from it.  The past year, my liver enzymes have been creeping up, so I don't know whether I can count on it forever.  It's been about 7 years since I did the combo therapy.

[SJL]

I have tried all 3 types of interferon for a period of 102 weeks.I was considered at first a non-responder, then relapser. I developed Cryoglobulinemia during the 2nd. round of treatment, which has resulted in Neuropathy.I am going to Shands University in Gainesville, FL., and have been advised no more interferon as it can do much more damage. The only thing left for me is Rituxin therapy.Cryoglobulin is due to the prescence of abnormal antibodies that come from Hep C virus stimulation of lymphocytes (white blood cells). These antibodies can deposit in small blood vessels, causing inflammation (vasculitis), in tissues throughout the body.Symptoms may include weakness, joint pain & swelling, a raised purple rash (purpura), usually in lower part of legs, swelling of the legs & feet due to loss of protein in the urine from kidney involvement(neuropathy). Fingers can also be affected. You need to have the cryoglobulinemia lab test done-their are 3 different types of cryo. In my case they have decided to treat the cryo with Rituxin, putting the Hep C on the back burner, hoping that ridding the body of cryo will help the neuropathy. I will know much more tomorrow as I have an appt. at Shands with a Hemotologist/Oncologist. If I find out anything else, I will be sure to let you know.
SJL