Severe Vasculitis Docs Don't Have Answers

Help!  Has anyone had this experience???  Background on husband - ITP, post-splenectomy, grade 2 state 4 Hep C, possible SLE, NEVER presents fever upon infection.  Had a couple infections last nine months, thought he was getting another cold 4 weeks ago, started feeling ill immediately went on antibiotics for precaution, starting feeling better but had a lot of joint pain in ankles and wrists, along with severe tingling and numbness.  Went to the Primary complaining of severe pain in joints, developed severe, large areas of purpura growing rapidly over 8 hour period, almost flowering over his calves and thighs.  He was admitted to the hospital, WBC was elevated, purpura started to blister and has now spread to his arms, still in a lot of pain.  They biopsied the purpura and said it was leukocytoplastic vasculitis, possibly caused by cryoblobulemia, but that the liver was not currently enlarged and the virus was not "active" at the present time.  Waiting to see the 2nd round of VL tests.  I can't believe how bad the vasculitis and purpura is and how quickly it has spread over his body.  Many spots have ruptured, very painful for him.  Currently kidneys are not involved.  Rheumatologist and GI doc aren't convinced it's from the Hep C.  We just found out the confirmation of Hep C due to mis-diagnosis a couple of years ago, thought to be false positive from SLE.  Has anyone had similar symptoms????  Docs won't treat with Prednisone or any other steroid until the biopsy the lymphatic system for possible lymphoma?  None of the doctors have any answers and just keep saying they don't know.  My husband is getting so depressed and frustrated and we can't seem to get a straight answer or even prognosis?  Any similar experiences?

[orleans]

Sorry, no help here. Praying for you and your husband. jerry

[Eisbein]

You need to be sure if he has cryoglobulinemia, and what type. If he has type 2 mixed Cryo it's from the Hepc. The symptoms you described go along with cryo.
To get rid of cryo he has to get rid of the Hepc. Symptomatic cryo is a *****.
People with hepc and symptomatic cryo  have a more difficult time to achieve SVR. They need longer tx, and sometimes another drug, Rituxan, a monoclonal antibody, given simultaneously with SOC.
Google Cryoglobulinemia, there is lots of info.

Ina

[holdinghope]

Thanks for the response.  They think he has cryo, but don't know what type.  I've already spent hours pouring over vasculitis and cryo.  From what I understand, there are three types, two of which are associated with Hep C, the other is associated with some other pathogens related to cancer.  My husband had Rituxin treatment for ITP and was the treatment was not succesful for that condition.  I'm waiting for the test results to come back on the type of cryo, and they are doing a lymph node biopsy today as well.  He's got it pretty bad.  His skin is destroyed, in so much pain and losing feeling in feet and hands.  I don't think the doctors either know what to do or understand how much pain he is in.  

L