Cryoglobulinemia: Want to connect

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?

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

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

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?

I was just diagnosed with Cryoglobulinemia. Can anyone tell me what it is like? Is there treatment? What are the negative side effects from treatment?

@denniscschultz

Greetings and welcome to the Mayo Clinic Connect. There are many blood disorders that are new information for me. I found this link below on the Mayo Clinic website.
Hopefully some members with some experience can chime in.
In general terms, in this time of patient portals and receiving information before we have had an opportunity to talk to our physicians about, it can be unnerving.
I would encourage you to call your physicians office today and ask for an opportunity to discuss this with him or her. As you can see from the information posted below, there are different types of cryoglobulinemia. You will need more information from your physician before anyone can answer questions about their experience definitively. I recommend that you call and ask for an in person appointment or at least a telemedicine call so that you can ask all your questions and they can be answered by your doctor. Start jotting your questions down because your brain may turn to mush when you’re talking to your physician if you’re anything like I am. I make a list and take notes when I get answers to my questions. Ideally, I have someone with me who can prompt me to ask questions I may forget and will remember answers to questions when I have totally blanked out the doctors responses. Your physician, if it’s a general practitioner, may give you a referral to a hematologist for further analysis. Although that seems scary, it’s really a good thing because generally speaking PCPs don’t have a lot of experience with blood disorders.
Try to stay calm and keep your anxiety under control as much as possible. Once you know you have something, even with very little information, it makes you anxious and anxiety is not your friend.
https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244
Will you let me know what your doctor says about this and if you are successful in getting more information?

@denniscschultz, I'm adding my welcome. I moved your questions about cryoglobulinemia, what it is like, what treatments are available and potential side effects, etc. to this existing discussion:
- Cryoglobulinemia: Want to connect https://connect.mayoclinic.org/discussion/cryoglobenemia/

I did this so you can read previous posts and connect with other members like @zebra2022 @marinella @pepin31219 @modens @slward1951 who have experience with cryoglobulinemia. As you know this blood condition may cause atypical proteins in the blood to clump together at body temperatures below 98.6 F (37 C). Treatments will vary with the underlying cause of the condition.

Dennis, is this a new diagnosis for you? What treatment is being suggested?

Yes, this is a brand new diagnosis for me. In April 2021, I was diagnosed with CHF , 10% EF, COPD after smoking 2-3 packs of cigarettes for over 31 years, Stage 4 CKD, central sleep apnea, and existing type 2 diabetes after having covid twice in 2020. Both times i had it really severe and was off work for 5 weeks each time. I have cryoglobulinemia but the doctors haven't found an underlining condition such as multiple myeloma, lupus, or another type of autoimmune disease. Which most cases have a secondary disease. Thank you for reaching out to me regarding this resource. I look forward to participating in this group.