Patient Comments: Cryoglobulinemia - Experience

Question:

How was cryoglobulinemia detected? Please share your experience. Submit Your Comment

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.

Comment from: Menopause hippy, 65-74 Female (Patient) Published: November 27

I was diagnosed with cryoglobulinemia and an unknown tissue cell disease in my 40s, now I'm almost 70 and I still have autoimmune problems. Fibromyalgia was diagnosed in 2000 something. I get discouraged because the cryoglobulinemia has cleared up as far as I know, but other problems continue such as pain, tiredness, weight gain, and lack of any energy! To walk and get the weight off I need more energy, it's like a loop, I can only go so far and then have to stop for pain problems.

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.

Comment from: patty, 55-64 Female (Patient) Published: April 06

I was informed that I had hepatitis C and also cryoglobulinemia and am taking the new drug Epclusa for hepatitis C. I have been on this drug for a month and my skin has cleared up except my nose. This was all over my face and painful, my feet get really numb and I cannot walk. I do not know if this is caused by cryoglobulinemia but I have been very ill due to this.

Comment from: exotic flower, 45-54 Female (Caregiver) Published: December 21

My sister lost her 7 year battle with cryoglobulinemia mixed in 2003. To those who either have it or are caring for someone who has it I would just like to say I admire your courage and your bravery dealing with it. My heart goes out to you all.

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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