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.
Just dx w/Cryo type 1. Hematologist looked for Lymphoma specifically. Bone biopsy and full body scan shows nothing (yet). I’m already on Rituxan for my RA. I’m left with waiting 6 months for follow up blood testing. Anyone else have this blood disorder and can share anything?
Just dx w/Cryo type 1. Hematologist looked for Lymphoma specifically. Bone biopsy and full body scan shows nothing (yet). I’m already on Rituxan for my RA. I’m left with waiting 6 months for follow up blood testing. Anyone else have this blood disorder and can share anything?
I did this so you can easily connect with other members who have experience with cryoglobenemia like @zebra2022@marinella@pepin31219 and @modens among others.
What symptoms are you experiencing that led to this diagnosis?
I did this so you can easily connect with other members who have experience with cryoglobenemia like @zebra2022@marinella@pepin31219 and @modens among others.
What symptoms are you experiencing that led to this diagnosis?
For years thought I just had severe Raynauds. I took pictures of parts of my body(thighs, stomach, butt, face etc) and showed to my new RA dr. She said you have Cold Agglutinate Disorder and change my infusion from Remicade to Retuxin. I didn’t like all the guessing so daughter out a hematologist. He ran to a of tests, scans and BMB. It confirmed Cryo type 1.
Hi - I'm sorry I don't have an answer to your question. This is my first post, and I'm not sure how to get back to an answer, but I wonder if you may know of a doctor specializing in cryoglobulinemia. Thanks so much. Bobbi
Hi - I'm sorry I don't have an answer to your question. This is my first post, and I'm not sure how to get back to an answer, but I wonder if you may know of a doctor specializing in cryoglobulinemia. Thanks so much. Bobbi
Welcome to Connect, @bobbihaugen Doctors who specialize in cryoglobulinemia are generally in one of 3 fields. It will depend on the underlying type of this blood condition.
Hematology
Nephrology and Hypertension
Rheumatology
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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.
Just dx w/Cryo type 1. Hematologist looked for Lymphoma specifically. Bone biopsy and full body scan shows nothing (yet). I’m already on Rituxan for my RA. I’m left with waiting 6 months for follow up blood testing. Anyone else have this blood disorder and can share anything?
Welcome, @slward1951. I moved your post about cryoglobulinemia type 1 to this existing discussion:
- Cryoglobulinemia: Want to connect https://connect.mayoclinic.org/discussion/cryoglobenemia/
I did this so you can easily connect with other members who have experience with cryoglobenemia like @zebra2022 @marinella @pepin31219 and @modens among others.
What symptoms are you experiencing that led to this diagnosis?
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1 ReactionFor years thought I just had severe Raynauds. I took pictures of parts of my body(thighs, stomach, butt, face etc) and showed to my new RA dr. She said you have Cold Agglutinate Disorder and change my infusion from Remicade to Retuxin. I didn’t like all the guessing so daughter out a hematologist. He ran to a of tests, scans and BMB. It confirmed Cryo type 1.
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Like -
Helpful -
Hug
1 ReactionHi - I'm sorry I don't have an answer to your question. This is my first post, and I'm not sure how to get back to an answer, but I wonder if you may know of a doctor specializing in cryoglobulinemia. Thanks so much. Bobbi
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Like -
Helpful -
Hug
2 ReactionsWelcome to Connect, @bobbihaugen Doctors who specialize in cryoglobulinemia are generally in one of 3 fields. It will depend on the underlying type of this blood condition.
Hematology
Nephrology and Hypertension
Rheumatology
Here are a couple of links to information about cryoglobulinemia.
https://my.clevelandclinic.org/health/diseases/13204-cryoglobulinemia
https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/diagnosis-treatment/drc-20449756
Were you or a loved one diagnosed with this blood condition? How was this discovered?
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