Hemolytic Anemia with circulating cryogloubins
I’m a 22 y/o female and I’ve been hemolytic for about four weeks now with speculation toward cold autoimmune hemolytic anemia and possibly triggered by a mycoplasma infection. Apparently infections are staying around in my body longer than they should. Has anyone experienced this? I know it is rather rare but it’s worth a shot in the dark to be able to speak to someone going through something similar. I’m being treated with rituxan in an attempt to stop the hemolysis but after two rounds i’m still hemolytic.
Now that the weather is getting colder. Has anyone with Cryoglobulinemia had issues with trying to take a deep breath or get shortness of breath in the cold weather or a cold area? I'm not sure if its realated or if its completely separate, One doctor at urgent care has a theory that its the cold weather or body temp that is making the lungs not fill up completely to get a full breath. My lungs were clear on the xray and not filled with fluid like they were in the hospital. Just wondering if anyone else had this issue.
Now that the weather is getting colder. Has anyone with Cryoglobulinemia had issues with trying to take a deep breath or get shortness of breath in the cold weather or a cold area? I'm not sure if its realated or if its completely separate, One doctor at urgent care has a theory that its the cold weather or body temp that is making the lungs not fill up completely to get a full breath. My lungs were clear on the xray and not filled with fluid like they were in the hospital. Just wondering if anyone else had this issue.
Hi @zebra2022 From our Mayo website: “ Cryoglobulins are abnormal proteins in the blood. If you have cryoglobulinemia (kry-o-glob-u-lih-NEE-me-uh), these proteins may clump together at temperatures below 98.6 F (37 C). These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs —“
From everything I’m reading about your disease, it’s crucial that you take extra precaution winter to keep your body warm because your blood won’t be able to flow as freely. The lungs can also be involved so it would stand to reason that when your circulation slows down, you won’t have as good of an oxygen exchange in the cold weather.
If you have cryoglobulinemia, it's important to avoid exposure to cold — especially to your fingers and toes. You may want to use gloves when using the freezer or refrigerator. Check your feet daily for any injuries, because cryoglobulinemia can make it more difficult for foot injuries to heal.
Two articles worth reading: https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244 https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/cryoglobulinemia/
Have you tried wearing a mask outside or keeping a gator/scarf around your face to keep your lungs warm while breathing?
Now that the weather is getting colder. Has anyone with Cryoglobulinemia had issues with trying to take a deep breath or get shortness of breath in the cold weather or a cold area? I'm not sure if its realated or if its completely separate, One doctor at urgent care has a theory that its the cold weather or body temp that is making the lungs not fill up completely to get a full breath. My lungs were clear on the xray and not filled with fluid like they were in the hospital. Just wondering if anyone else had this issue.
My brother developed cryoglobulinemia in his early 40’s. The term means “cold blood”. The blood just clumps together and the cold weather is very difficult for those who have this illness. My brother was a truck driver and found it so hard to be out there doing his job in the cold weather. He used to wear very heavy socks and gloves and really “bundle up” in the New England winters here. Sadly, he passed away at age 46 but NOT from cryoglobulinemia. He was on vacation in Santo Domingo when he had a cerebral hemorrhage. His doctor in Boston assured us that it was *not* from his cryoglobulinemia. He never had shortness of breath but just felt the cold more intensely than his family members. Wishing you all the best as you go through this illness. The shortness of breath may be due to something else. My brother was with a great hematologist here in Boston.
Hi @zebra2022 From our Mayo website: “ Cryoglobulins are abnormal proteins in the blood. If you have cryoglobulinemia (kry-o-glob-u-lih-NEE-me-uh), these proteins may clump together at temperatures below 98.6 F (37 C). These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs —“
From everything I’m reading about your disease, it’s crucial that you take extra precaution winter to keep your body warm because your blood won’t be able to flow as freely. The lungs can also be involved so it would stand to reason that when your circulation slows down, you won’t have as good of an oxygen exchange in the cold weather.
If you have cryoglobulinemia, it's important to avoid exposure to cold — especially to your fingers and toes. You may want to use gloves when using the freezer or refrigerator. Check your feet daily for any injuries, because cryoglobulinemia can make it more difficult for foot injuries to heal.
Two articles worth reading: https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244 https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/cryoglobulinemia/
Have you tried wearing a mask outside or keeping a gator/scarf around your face to keep your lungs warm while breathing?
most of the time when I have the issues breathing is at work. Of course its cold in the office. When I wear the mask for long periods of time it triggers my asthma.im learning all sorts of things with this Cryoglobulinemia. i wear fingerless gloves most of the time at work and my daughter got me foot warmers to put in my shoes for work. I'll see if she can make me a gator so that I can functually wear it in the office. thank you
I've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.
I've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.
Hi @zebra2022 with your cryoglobulinemia there proteins in your blood which clump together if your body temperature falls under 98.6. These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs, muscles… So basically, when it gets cold, the reason you’re feeling more fatigue with muscle weakness is the lack of oxygen to your tissue. It’s similar to what we talked about with your finding it difficult to breath when you’re cold.
This has to be really challenging for you when winter hits. Not sure what part of the country you’re in but it’s been brutal here in the Midwest trying to keep warm. From our other conversation regarding your breathing, the idea of wearing a gator at work is great. It would be less constricting on your face than a mask so hopefully would lessen the asthma triggers for you. Also, I’m wondering if a little personal warm air mist machine might help you breath better? I have one from Vicks. It’s small, very easy to keep clean and sits on a desk with minimal footprint.
Have you tried fleece lined leggings? Or tights under your pants? Cuddleduds! Those would add another layer of warmth to keep your body temp up.
I did a little more research and found 2 articles that are worthwhile. This is from the Vasculitis Foundation on cryoglobulinemia. You maybe have seen it already but if not, it’s a good source of information on the condition, causes, symptoms (including muscle weakness) and how to cope. https://www.vasculitisfoundation.org/education/forms/cryoglobulinemia/#1545061445202-657df321-5002
There’s a patient advocacy organization for patients with Cryo that you might find of some additional help.
Alliance for Crypto: http://allianceforcryo.org/
Since my bone marrow transplant, my hands are always cold. So my daughter bought me this cute little hand muff that’s has a battery pack to keep it warm! Think that’s something you might like?
I've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.
Thanks for the additional information. I'm still learning more about these new flares (if that's what you call them). Everything this winter is new to me so I have lots of questions and no one around here can answer them for me.
I live in Washington state and it's getting colder here. Not terrible bad but it is cold enough to cause me issues. I have been wearing layers - 2 pairs of socks, fleece lined leggings under my pants, thermal tops under my work shirts plus a fleece vest and my fleece jacket. Then I wear fingerless gloves at work too. My daughter is getting me things that will help keep my body temp up so that helps. She's looking out for me.
I just started looking into like a portable sauna that I could periodically use during the course of the day to see if that can help melt the proteins (even if I can't tell if it helps). But it could help raise my body temp since it normally runs between 97.3 to 98.4 on normal days. I went to a home and garden show today so that got the idea in my mind. Found a few on amazon. Found a few I could possibly get.
Thanks again for the information and suggestions.
I've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.
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I had this with hep c and was cured through treatment for hep c.
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1 ReactionHemolytic Anemia with circulating cryogloubins
I’m a 22 y/o female and I’ve been hemolytic for about four weeks now with speculation toward cold autoimmune hemolytic anemia and possibly triggered by a mycoplasma infection. Apparently infections are staying around in my body longer than they should. Has anyone experienced this? I know it is rather rare but it’s worth a shot in the dark to be able to speak to someone going through something similar. I’m being treated with rituxan in an attempt to stop the hemolysis but after two rounds i’m still hemolytic.
Now that the weather is getting colder. Has anyone with Cryoglobulinemia had issues with trying to take a deep breath or get shortness of breath in the cold weather or a cold area? I'm not sure if its realated or if its completely separate, One doctor at urgent care has a theory that its the cold weather or body temp that is making the lungs not fill up completely to get a full breath. My lungs were clear on the xray and not filled with fluid like they were in the hospital. Just wondering if anyone else had this issue.
Hi @zebra2022 From our Mayo website: “ Cryoglobulins are abnormal proteins in the blood. If you have cryoglobulinemia (kry-o-glob-u-lih-NEE-me-uh), these proteins may clump together at temperatures below 98.6 F (37 C). These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs —“
From everything I’m reading about your disease, it’s crucial that you take extra precaution winter to keep your body warm because your blood won’t be able to flow as freely. The lungs can also be involved so it would stand to reason that when your circulation slows down, you won’t have as good of an oxygen exchange in the cold weather.
If you have cryoglobulinemia, it's important to avoid exposure to cold — especially to your fingers and toes. You may want to use gloves when using the freezer or refrigerator. Check your feet daily for any injuries, because cryoglobulinemia can make it more difficult for foot injuries to heal.
Two articles worth reading:
https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244
https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/cryoglobulinemia/
Have you tried wearing a mask outside or keeping a gator/scarf around your face to keep your lungs warm while breathing?
My brother developed cryoglobulinemia in his early 40’s. The term means “cold blood”. The blood just clumps together and the cold weather is very difficult for those who have this illness. My brother was a truck driver and found it so hard to be out there doing his job in the cold weather. He used to wear very heavy socks and gloves and really “bundle up” in the New England winters here. Sadly, he passed away at age 46 but NOT from cryoglobulinemia. He was on vacation in Santo Domingo when he had a cerebral hemorrhage. His doctor in Boston assured us that it was *not* from his cryoglobulinemia. He never had shortness of breath but just felt the cold more intensely than his family members. Wishing you all the best as you go through this illness. The shortness of breath may be due to something else. My brother was with a great hematologist here in Boston.
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1 Reactionmost of the time when I have the issues breathing is at work. Of course its cold in the office. When I wear the mask for long periods of time it triggers my asthma.im learning all sorts of things with this Cryoglobulinemia. i wear fingerless gloves most of the time at work and my daughter got me foot warmers to put in my shoes for work. I'll see if she can make me a gator so that I can functually wear it in the office. thank you
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1 ReactionI've been wondering if anyone else has had issues with muscle weakness when you get colder. The colder it gets from the weather, Because of the Cryoglobulinemia, I have been dealing with difficulty to take deep breaths. I've also noticed muscle weakness.
Hi @zebra2022 with your cryoglobulinemia there proteins in your blood which clump together if your body temperature falls under 98.6. These gelatinous protein clumps can impede your blood circulation, which can damage your skin, joints, nerves and organs, muscles… So basically, when it gets cold, the reason you’re feeling more fatigue with muscle weakness is the lack of oxygen to your tissue. It’s similar to what we talked about with your finding it difficult to breath when you’re cold.
This has to be really challenging for you when winter hits. Not sure what part of the country you’re in but it’s been brutal here in the Midwest trying to keep warm. From our other conversation regarding your breathing, the idea of wearing a gator at work is great. It would be less constricting on your face than a mask so hopefully would lessen the asthma triggers for you. Also, I’m wondering if a little personal warm air mist machine might help you breath better? I have one from Vicks. It’s small, very easy to keep clean and sits on a desk with minimal footprint.
Have you tried fleece lined leggings? Or tights under your pants? Cuddleduds! Those would add another layer of warmth to keep your body temp up.
I did a little more research and found 2 articles that are worthwhile. This is from the Vasculitis Foundation on cryoglobulinemia. You maybe have seen it already but if not, it’s a good source of information on the condition, causes, symptoms (including muscle weakness) and how to cope.
https://www.vasculitisfoundation.org/education/forms/cryoglobulinemia/#1545061445202-657df321-5002
There’s a patient advocacy organization for patients with Cryo that you might find of some additional help.
Alliance for Crypto: http://allianceforcryo.org/
Since my bone marrow transplant, my hands are always cold. So my daughter bought me this cute little hand muff that’s has a battery pack to keep it warm! Think that’s something you might like?
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2 ReactionsThanks for the additional information. I'm still learning more about these new flares (if that's what you call them). Everything this winter is new to me so I have lots of questions and no one around here can answer them for me.
I live in Washington state and it's getting colder here. Not terrible bad but it is cold enough to cause me issues. I have been wearing layers - 2 pairs of socks, fleece lined leggings under my pants, thermal tops under my work shirts plus a fleece vest and my fleece jacket. Then I wear fingerless gloves at work too. My daughter is getting me things that will help keep my body temp up so that helps. She's looking out for me.
I just started looking into like a portable sauna that I could periodically use during the course of the day to see if that can help melt the proteins (even if I can't tell if it helps). But it could help raise my body temp since it normally runs between 97.3 to 98.4 on normal days. I went to a home and garden show today so that got the idea in my mind. Found a few on amazon. Found a few I could possibly get.
Thanks again for the information and suggestions.
Your body temp is normal. That's not the place to look for problems.