Cryoglobulinemia not caused by hepatitis or lymphoma?

Hello @modens, Welcome to Mayo Clinic Connect. I know it must be difficult to cope with such a rare disorder. I did find some information on the NIH Rare Diseases and Genetic Information Center that may be helpful. Simple cryoglobulinemia -- https://rarediseases.info.nih.gov/diseases/6217/cryoglobulinemia

Are you able to share a little more about your diagnosis of cryoglobulinemia and your current treatment? Are your flares between treatments mostly joint pain?

I was diagnosed with inflammatory arthritis about ten years ago. Rheumatology tried a lot of different meds and nothing seemed to really work. 5 years later I began having GI issues (bloody diarrhea) and colonoscopy showed multiple ulcerations in the cecum which got me a diagnosis of Crohns. This made me able to have remicade infusions and I felt much better. Joint pain was much better and tendinitis issues were almost completely gone.
About 18 months ago I started having uncontrollable hypertension and protein urea and decreased kidney function as well as extreme fatigue, migraine headaches, and shortness of breath. I had a kidney biopsy that was sent to Mayo Clinic in Rochester and they found the cryoglobulins in the vessels.
I was then started on rituximab infusions. I have had three rounds now. One every six months. Unfortunately only 2 months after my last treatment all of my symptoms came back. My nephrologist put me on 64mg of methyl prednisone and I am now tapered down to 8mg. I am still having the old musculoskeletal issues, especially random tendinitis that just make working difficult as I have a fairly physical job. The fatigue is pretty significant. Most days I have to go to bed shortly after I get home from work. Right now my kidney function is back to my new normal and my HTN is under control.
My nephrologist together with my rheumatologist has now decided that they want to discontinue the methotrexate that I’ve been on since the beginning and replace it with cellcept. I started this yesterday.
My nephrologist has been researching how he should treat me chronically but the only articles out there are referencing acute treatment usually with the associated hepatitis or lymphoma diagnosis so that’s why I am reaching out.

@modens, Here's some information I found that may explain the Cryoglobulin test a little more...

Excerpt from following link..."What does a positive Cryoglobulin test mean? --- If you test positive for cryoglobulins, it means these proteins became visibly sludge-like when your blood sample was refrigerated. If your cryoglobulin test is positive, your healthcare provider will do more tests to find out the cause." -- https://www.saintlukeskc.org/health-library/cryoglobulin

Have your doctors diagnosed a cause for the cryoglobulins in your blood vessels or suggested any additional tests to determine a possible cause?

Lots of labs and they feel they have ruled out any underlying disease

@modens Just a thought but have you discussed the tapering down of the methyl prednisone with your doctor to see if that is a possible cause of the return of some of your symptoms? I've had 2 occurrences of polymyalgia rheumatica (PMR) and tapering down too fast made the pain come back quickly. I took 3+ years to taper off of prednisone the 1st time and 1-1/2 to taper off the 2nd time.

Wondering if your doctors think you might have Mixed Cryoglobulinemia which is another rare form of the disease.

NORD - Mixed Cryoglobulinemia: https://rarediseases.org/rare-diseases/mixed-cryoglobulinemia/

I am 89 yes old and my primary care physician diagnosed my cryoglobulinemia about a year ago. I am cold and wear 2 layers of clothes and warm gloves most of the time. I have neuropathy in hands, mostly the fingers and it feels icy cold and numb.

@karenlott I’m so sorry that at 88 you got this problem condition. Are you on any medications for it? I’m glad you wear extra clothes. Do you keep the thermostat at a higher temperature? Your fingers and toes are the most at risk so do everything you can to keep them warm. Gloves or mittens are great for your hands and thick, thermal socks for your feet.
Do you have any family or friends who can help you manage this problem?

Thank-you Becky, I keep room temp at 70 days and 65 at night. I'm on meds to control afib because my pulse rate has been very high. Anxiety med, etc. I have a phone appt with neurologist this Thursday. I'm not even sure what to ask him. I'm scared of invasive, or painful choices he may come up with. One son and his family is close and supports me. Good wishes to you. Karen Lott