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
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
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:
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
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
Thank you for sharing. Sorry about your brother. The information you shared has been useful. I'm still processing a lot of information with this. Everything help
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:
Currently I am seeing a nephrologist for the kidneys. I also have my rheumatologist, oncologist/hemotologist, primarily. but I also have G.I. specialist, ENT, eye doctor, and primary. Mainly because I want all my doctors on the same page as to my diagnosis. I've been running into medical issues with everything since my diagnosis. I don't have hepatitis or lymphoma.
I was told it stemmed from my sjogrens.
I am curious as to when you were diagnosed with cryoglobulinemia, what made the doctors determine what or how to test for it? I'm still trying to piece together what the thought process was to eventually lead to my diagnosis. I had so many tests and procedures done when I was in the hospital that I'm still baffled as to how they determined I have cryoglobulinemia. I originally went in for a migrane where i couldn't keep anything down. I was admitted for heart failure, I also had numerous xrays, echo, ekgs, blood transfusions, dialysis, had to bring my sodium levels up (from 113), Rituxan, ultra sounds, kidney biopsy, and who knows what else within a 19 day period.
Like I said, i'd like to see how others were diagnosed with the condition.
Currently I am seeing a nephrologist for the kidneys. I also have my rheumatologist, oncologist/hemotologist, primarily. but I also have G.I. specialist, ENT, eye doctor, and primary. Mainly because I want all my doctors on the same page as to my diagnosis. I've been running into medical issues with everything since my diagnosis. I don't have hepatitis or lymphoma.
I was told it stemmed from my sjogrens.
@zebra22. I know how difficult it is to have so many doctors. It can be very confusing for me. Luckily, most are on the same patient portal so they can all see test and imaging results. And i send my primary doctor notes from time to time just to make sure she’s “in the loop.”
I also keep a small divided notebook with a space for each doctor/speciality. I jot down questions, lab tests or imaging, what the doctor says, and new medicines (or cancelled ones). This notebook goes to all appointments with me!
What do you do to keep everyone straight?
@zebra22. I know how difficult it is to have so many doctors. It can be very confusing for me. Luckily, most are on the same patient portal so they can all see test and imaging results. And i send my primary doctor notes from time to time just to make sure she’s “in the loop.”
I also keep a small divided notebook with a space for each doctor/speciality. I jot down questions, lab tests or imaging, what the doctor says, and new medicines (or cancelled ones). This notebook goes to all appointments with me!
What do you do to keep everyone straight?
I also keep a binder with all my medical stuff in it now. I also have all my doctor information and medication information with me all the time. So far I have made sure to inform all my doctors, including my eye doctor, of the diagnosis of cryoglobulinemia. I don't know which one or how many of them it will affect. Better for them to have the information and not be affected than be affected and not have the information. I just don't know which doctors will be involved since it feels like my system is one ball of tangled yarn. It can't be a simple question to ask.
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Welcome @marinella
I'm tagging fellow members @roxanablue @blt054 @modens @pepin31219, who have experience with cryoglobulinemia and may be able to provide more insight for you.
In the meantime, you might be interested in these related discussions:
- Cryoglobulinemia not caused by hepatitis or lymphoma? https://connect.mayoclinic.org/discussion/cryoglobulinemia-not-caused-by-hepatitis-or-lymphoma/
- Cryoglobulinemia Vasculitis Question https://connect.mayoclinic.org/discussion/cryoglobulinemia-vadculitis/
Is Cryoglobulinemia a new diagnosis for you? What symptoms are you dealing with?
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2 ReactionsThank you
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
-
Like -
Helpful -
Hug
1 ReactionHi @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?
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4 ReactionsHi 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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Helpful -
Hug
7 ReactionsThank you for sharing. Sorry about your brother. The information you shared has been useful. I'm still processing a lot of information with this. Everything help
-
Like -
Helpful -
Hug
1 ReactionCurrently I am seeing a nephrologist for the kidneys. I also have my rheumatologist, oncologist/hemotologist, primarily. but I also have G.I. specialist, ENT, eye doctor, and primary. Mainly because I want all my doctors on the same page as to my diagnosis. I've been running into medical issues with everything since my diagnosis. I don't have hepatitis or lymphoma.
I was told it stemmed from my sjogrens.
I am curious as to when you were diagnosed with cryoglobulinemia, what made the doctors determine what or how to test for it? I'm still trying to piece together what the thought process was to eventually lead to my diagnosis. I had so many tests and procedures done when I was in the hospital that I'm still baffled as to how they determined I have cryoglobulinemia. I originally went in for a migrane where i couldn't keep anything down. I was admitted for heart failure, I also had numerous xrays, echo, ekgs, blood transfusions, dialysis, had to bring my sodium levels up (from 113), Rituxan, ultra sounds, kidney biopsy, and who knows what else within a 19 day period.
Like I said, i'd like to see how others were diagnosed with the condition.
@zebra22. I know how difficult it is to have so many doctors. It can be very confusing for me. Luckily, most are on the same patient portal so they can all see test and imaging results. And i send my primary doctor notes from time to time just to make sure she’s “in the loop.”
I also keep a small divided notebook with a space for each doctor/speciality. I jot down questions, lab tests or imaging, what the doctor says, and new medicines (or cancelled ones). This notebook goes to all appointments with me!
What do you do to keep everyone straight?
-
Like -
Helpful -
Hug
5 ReactionsI also keep a binder with all my medical stuff in it now. I also have all my doctor information and medication information with me all the time. So far I have made sure to inform all my doctors, including my eye doctor, of the diagnosis of cryoglobulinemia. I don't know which one or how many of them it will affect. Better for them to have the information and not be affected than be affected and not have the information. I just don't know which doctors will be involved since it feels like my system is one ball of tangled yarn. It can't be a simple question to ask.
-
Like -
Helpful -
Hug
3 Reactions