MGUS associated with Type I Cryoglobulinemia

Hello @pepin31219 and welcome to Mayo Clinic Connect.
Let me research to see if there are members that have experienced this.
https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244
In the meantime, can you give us information on your diagnosis?

@pepin31219, allow me to bring @deborahspirit and @modens into this discussion as they have talked about cryoglobulinemia as well. Is this a new diagnosis for you? What treatment options are being considered?

Hi Amanda, thank you for following up with me. I have almost lost hope of figuring out this disease with there being so little information out there
I was diagnosed with MGUS by accident when it showed up on a lab report for something else. It was about 15 years ago and I have progressed slowly but steadily. My M spike is .9 at this point. About 6 years later I started exhibiting symptoms of cold allergy, according to my internist. Mild at first and then obvious signs of purpura on my ankles, red marks, and extreme fatigue would accompany these cold exposures. I developed an ulcer on my ankle which took months to heal with great help from a wound center. That was 3 years ago. Since then I have had two more and the healing is very slow. Prednisone is the treatment and I started at 60mg 3 years ago. I managed to taper to 5mg before developing the 2nd and 3rd ulcer and am now tapered to 9mg. We are taking it very slowly--1 mg a month and so far I have been good with it. Needless to say, I am absolutely paranoid about the temperature and wind. It's a life changer. That's my story and I just wonder if anyone has had experiences with this disease.

Wondering if MGUS is related to Cold Agglutinin Disease. I have both and also ITP, another auto immune disease that attacks blood platelets. As I understand it there is no effective treatment for CAD and MGUS. I was told to avoid the cold but it's pretty difficult when you live in norther Michigan. Good luck and stay warm.

MGUS related Cryoglobulinemia Treatments
Can someone share their experience with treatments/effectiveness? I have developed terrible neuropathy in my feet and it is moving up my shins. I am also my husband’s primary caregiver. He was diagnosed with primary progressive MS when he was 40 and was non-ambulatory by 42. That was 20 years ago, and obviously his care requires more and more of me. I guess I am looking for some hope that treatments are effective.

@spmreads1, I moved your question about treatment for MGUS-related cryoglobulinemia to this existing discussion to connect you with @hi2l and @pepin31219.

- MGUS associated with Type I Cryoglobulinemia https://connect.mayoclinic.org/discussion/mgus-associated-with-type-i-cryoglobulinemia/

Dealing with your own condition and being a long-time caregiver is doubly challenging. @hrhwilliams knows this well too.

@spmreads1, may I ask what treatment have you had thus far? Is the neuropathy treatment-induced?

I haven’t had treatment yet. I thought my last hematology appt (last week) was to discuss recent test results and discuss treatment options but a Type 2 cyro marker showed up and the doctor was 90% sure I had Type 1, so a plan is on until he consults with my rheumatologist and his colleagues. It is a very lonely disease bc no one has heard of it and no one I know has ever had it.