Cryoglobulinemia Vasculitis Question

Posted by roxanablue @roxanablue, Jul 20, 2022

I've been diagnosed with Cryo Vasc..(for short). Along with Sjogrens and Reynauds, both oc which are laying low right now..im on Methotrexate and tapering off Prednisone..my symptoms that got me here were flare ups on my legs..havent had a flare up in weeks which I attribute to a few things. They have ruled out Multiple Myeloma and I'm going to Standford for a second opinion since this is a blood disease..and trying to find my triggers for flare ups.. but this is my question....has anyone had a bone marrow biopsy to eliminate blood cancer?..my Cryo surfaced due to Hep C years ago which was eliminated thru treatment...thank you in advance.

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Colleen Young, Connect Director | @colleenyoung | Jul 23, 2022

@roxanablue, welcome. I'm tagging fellow members @blt054 @modens @pepin31219, who have experience with cryoglobulinemia and may be able to provide more insight for you.

Roxana, you ask about a bone marrow biopsy as a possible treatment. I think you might be referring to a bone marrow or stem cell transplant. (Bone marrow biopsy is a test, not a treatment. See more here: https://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/about/pac-20393117)

From what I could gather through an internet search bone marrow or stem cell treatment is not the standard treatment option, but is being studied.

Plasmapheresis (plasma exchange) is an option when patients have life-threatening, or organ-threatening cryoglobulinemia. This procedure filters clumps of cryoglobulins from the blood plasma, helping to prevent cryoglobulins from blocking the arteries and restricting blood flow to organs.

Has your team suggest a bone marrow biopsy for further testing?

blt054 | @blt054 | Jul 26, 2022

In reply to @colleenyoung "@roxanablue, welcome. I'm tagging fellow members @blt054 @modens @pepin31219, who have experience with cryoglobulinemia and may..." + (show)

Sorry, no. I don't have a team, just one neurologist whom I haven't seen in many months. Guess she doesn't feel there's anything to be done about it. That & the neuropathy I struggle with daily I just give up & live with the pain. Good luck to you.

Colleen Young, Connect Director | @colleenyoung | Jul 27, 2022

In reply to @blt054 "Sorry, no. I don't have a team, just one neurologist whom I haven't seen in many..." + (show)

A neurologist along with you and perhaps your PCP makes a team too. 🙂
Unfortunately, it is true that there is no treatment for neuropathy and it can be very frustrating. I see you take part in the Neuropathy support group. Many of the members there share coping strategies. Little comfort, I know.

roselyn | @roselyn | Jul 28, 2022

I’m 79 and have been having pain in my toes a little but have had numbness in both feet. My question is will I have to amputate my toes eventually?I am a borderline diabetic but I just had a physical yesterday and doctor didn’t seem concerned.

chris47 | @chris47 | Aug 11, 2022

Roxan -
The symptoms you list can also be connected to Celiac Disease based on a recent statement that CD has as many as 200 connected symptoms.

There is a blood test for CDC called Transglutiminase tissue of tgt test. But it requires that you have been eating gluten containing foods for at least 6 months.

If you are already gluten free there is also an older IG blood test.

I don’t know if your symptoms are related to CD - but eliminating CD can allow you to focus on other possible causes. Or if related to CD it will allow you to possibly better manage the causes that create the symptoms you have listed!
Chris47 -

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