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Old 04-23-2008, 09:42 AM   #1
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cryo HB User
cryoglobulenemia

This is my first posting. Diagnosed with cryos 2 years ago. Do not have and never had Hep. C. First detected because polyneuropathy in toes, spread to foot. Only sensory. Cryo found. Rheumatoid factor over 1300. No meds or treatment until routine blood tests in Dec. 2007 showed high creatinine and urea. F/U showed both parameters slowly failing, now together with Hemoglobin levels to 8.9. Received blood twice. Swollen feet, edema in legs, etc. Kidney biopsy found cryos in kidney. Started plasmapheresis in March, 2008, and taking Prednisone 60 mgs per day. Seems to have stabilized kidneys, creatinine 2.3, urea now at 195. Cannot continue steroids indefinitely. Does anyone understand this? I have an excellent team at the hospital helping, but the condition is so rare, it is difficult to choose the next step. I do not have cancer (lymphoma) as far as determined by bone marrow check. THE BIG QUESTION. A fairly new drug available called Rituximab in Europe, Rituxan in the U.S., and Mabtherea in some of Europe has been effective in supressing the cryos. Traditional Chemo may help, but this drug has less side effects. HAS ANYONE USED THIS DRUG OR KNOW SOMEONE WHO HAS PERSONAL EXPERIENCE??? My professors and kidney doctor believe it could work. Thanks for any answer.

Cryo

 
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