Patient Comments: Cryoglobulinemia - Experience

How was cryoglobulinemia detected? Please share your experience.

Comment from: Skyline, Female (Patient) Published: January 21

Diagnosis for me was quite accidental, when I was having a flare-up of arthritis and fibromyalgia. I was referred to hematologist who state that essential mixed cryoglobulinemia was not their expertise. I was seen only on a few occasions within 12 months, with the occasional blood tests. It is hard to be told that one is not bad enough to have any treatment, and then be told on the other hand that the cryoglobulinemia just disappeared. Feeling ill myself, I chose to have treatment elsewhere, of one month sunshine, remove all drugs I was taking for blood pressure, cholesterol and painkillers. I went on continuous antibiotics; and went on a regime of taking a lot of water. On return to cold environment, I deteriorated again, and because of the pain, prescribed Pregabalin. It is helping.

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Comment from: willkat, 45-54 Female (Patient) Published: July 10

I was diagnosed with essential mixed cryoglobulinemia about 11 years ago. I was successfully treated with rituximab after unsuccessful trials with other immune suppressing medications. The lab values for the disease were slow to disappear but eventually did and never returned. Subsequently the kidney damage healed as well as the pigmentation from the vasculitis. I still have some nerve damage in my extremities but it is not serious. Now I have discovered I have valve regurgitation and wondering if there may be a connection. It is not a serious problem however.

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Comment from: Fused, 45-54 Female (Caregiver) Published: April 22

Our daughter was diagnosed with cryoglobulinemia vasculitis. She has lost the ability to use her hands, arms, and legs. The Doctor plans to use Rituxan. He is waiting for her antibodies to reach a certain level then he plans to start the chemo.

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Essential Mixed Cryoglobulinemia - Treatment Question: What treatments, including medications, have you received for your essential mixed cryoglobulinemia?

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