Cryoglobulinemia Vasculitis Question

@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?

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.

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.

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.

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 -

I wandered if anyone has experienced Liver Cirrohsis from having Cryoglobulinemia vasculitis w/o Hep C

Anyone have Cryoglobulinemia?
Just diagnosed and looking for others with this disorder.

Welcome to Connect, @nanabest24. I’ve found a couple of discussions for you with members who are experiencing Cryoglobulinemia. Some have mentioned this diagnosis is without previously having Hep C but I’m not sure about all of them.

Here’s a conversation started by @modens a few years ago.

Cryoglobulinemia not caused by hepatitis or lymphoma:
https://connect.mayoclinic.org/discussion/cryoglobulinemia-not-caused-by-hepatitis-or-lymphoma/
I’m also going to tag fellow members @roxanablue @blt054 @pepin31219 @ zebra2022 @marinella in hopes they may have some information for you.

Was this a recent diagnosis for you? What has your doctor suggested for possible treatments?

@spmreads1, I'm tagging @roxanablue, @zebra2022 @nanabest24 @blt054 @modens @pepin31219 to rejoin this discussion and join me in welcoming you.

- Cryoglobulinemia Vasculitis Question https://connect.mayoclinic.org/discussion/cryoglobulinemia-vadculitis/

Does anyone have cryoglobulinemia vasculitis (severe attack coming w in 6 hrs of having both lower legs and fingers amputated) CIDP/CIPD ?