1. < Autoimmune Diseases
Profile picture for roxanablue

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for blt054
blt054 | @blt054 | Jul 29, 2024
In reply to @1kerrilyn "Does anyone have cryoglobulinemia vasculitis (severe attack coming w in 6 hrs of having both lower..." + (show)
Profile picture for 1kerrilyn @1kerrilyn

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

Jump to this post

No & I'm sorry I can't be more helpful to you. I don't have a doctor anymore that I even see as there aren't any in my area trained in this. I had Hep C & did the treatment for it & am clear of that virus but still deal with the Cry Vas. It disrupts my life terribly pain wise & not being able to stay warm.
My gosh, is the loss of your limbs caused by this terrible disease? I'm sorry, that isn't my business...
But hey, if you'd like to talk anytime I extend my hand in friendship..
Be well!
Bonnie

REPLY
Profile picture for gabyk
gabyk | @gabyk | Apr 10 9:12am

Do you recommend a doctor in California? I am a loss in finding a doctor that understands Cryoglobulinemia.

REPLY
1 reply
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 11 10:58pm
In reply to @gabyk "Do you recommend a doctor in California? I am a loss in finding a doctor that..." + (show)
Profile picture for gabyk @gabyk

Do you recommend a doctor in California? I am a loss in finding a doctor that understands Cryoglobulinemia.

Jump to this post

@gabyk and @blt054 Doctors (rheumatologists) can be hard to find, unfortunately. The best ones are at comprehensive medical center or university medical centers. You may need to drive some to find them. Here are two organizations that may be able to help you.
NORD National organization for rare diseases and
Https//rare diseases.org
Oh, I’m so sorry. My resources have become all tied up! I’ll finish this first thing tomorrow, promise.

REPLY
Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 12 10:07pm

@gabyk and @blt054 Well, I guess I failed in my promise to you. The 2 organizations are similar but different. I wanted to make sure i had the correct url for each one. They have information on rheumatologists and what they specialize in. Tell them what you are looking for and they should be able to help (for free).
GARD. https://rarediseases.info.nih.gov/
NORD. https://rarediseases.org/
https://autoimmune.org/resource-center/finding-a-physician/ The Autoimmune Society can also help you in your search for a doctor.
So now you have lots of work for Monday! Good luck!

REPLY
Profile picture for gabyk
gabyk | @gabyk | Apr 12 11:27pm

Thank you Becky, I appreciate the info. I have not found a doctor who truly specializes in Cryoglobulinemia in Los Angeles. I know there is the Mayo, which is not taking new patients, also the Cleveland Clinic. It certainly would be more convenient to find a doctor specializing in Cryoglobulinemia here in California. Best, Gabrielle

REPLY
Please sign in or register to post a reply.