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Cryoglobulinemia: Want to connect
Blood Cancers & Disorders | Last Active: Jan 9 10:02am | Replies (17)Comment receiving replies
Hello, Last month I was diagnosed with cryoglobulinemia and am processing what this will mean to me. The diagnosis did answer a lot of questions from prior medical issues, but it also left me with more questions about the future. I was originally diagnosed with sjogrens back in 2015 (but I think I had it since 1995). To my knowledge I'm the only person around my area with this and I am not sure what to expect as to treatment other than the meds I am currently taking.
I'm doing what I can to stay layered warm to keep my body temp above 98.6, not much luck. I wear layers and cover with lots of blankets. Still my body temp can be anywhere from 97.8 to 98.6. Does anyone have any other suggestions as to staying warm other than wearing a total snowsuit24/7?
I would also like to hear from others who also have this. I'm still learning about this and want to know more about it. thanks
Replies to "Hello, Last month I was diagnosed with cryoglobulinemia and am processing what this will mean to..."
Hi zebra2022,
My brother was diagnosed with cryoglobulinemia back in the 90’s and my own doctor told me that the term means “cold blood”. My brother is no longer with us, but did not pass away from this blood disorder. He died from something else at the age of 46. He used to see a hematologist at Brigham and Women’s Hospital here in Boston. He was always monitored by this doctor, who was wonderful to him. My brother did have to go on a treatment regimen for it, and as I remember, it was a drug called “Interferon”. I can’t remember if it was an infusion or a pill. He did very well with it. However, he was a truck driver living in the Boston area and he used to work the night shift. I do remember him complaining of how cold he was and I think that he sent to LL Bean for some very warm socks, layered clothing etc to wear when he had to work. He was able to continue to work with this illness, as long as he dressed properly, and the Interferon seemed to keep the illness at bay. He passed away from a cerebral hemorrhage and his hematologist came to his funeral. The doctor came over to our family and said “I just want you to know that he did not die from the Cryolglobulinemia……..that had nothing to do with the cerebral hemorrhage.” So, he basically did the treatments, dressed very warmly in these harsh New England winters when he needed to work through the night, and saw his doctor for blood tests once every few months. I hope that what I have told you will be helpful to you. It is important to become connected with a hematologist. All of my best wishes to you as you navigate this blood disorder. MaryAnn from MA
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Hi @zebra2022 Cryoglobulinemia is a new word for me. So I did some quick research to see what is involved with this diagnosis.
“Cryoglobulins are proteins found in the blood that precipitate (clump together) in the cold and may cause inflammation and organ damage. However, these proteins can also be present in low levels in the blood without causing any symptoms. When there are symptoms due to the cryoglobulins, the disease (usually a special rash) is called "cryoglobulinemia."
https://my.clevelandclinic.org/health/diseases/13204-cryoglobulinemia
Trying to keep your body at a constant 98,6 has to be challenging. Especially in cooler climates! What are your symptoms?
There are a couple of conversations in our forum with other members who have cryoglobulinemia but I don’t see any recent posts from these members.
Here are links to the discussions:
Cryoglobulinemia: Want to connect
https://connect.mayoclinic.org/discussion/cryoglobenemia/
Cryoglobulinemia not caused by hepatitis or lymphoma?
https://connect.mayoclinic.org/discussion/cryoglobulinemia-not-caused-by-hepatitis-or-lymphoma/
What doctor are you seeing for the Cryoglobulinemia? Have you been prescribed any medicaions? If you’re not getting any answers from your current doctor, have you considered a second opinion?