[dotsie]

MGUS or myeloma with chronic urticaria & angioedema

by dotsie on Wed Dec 17, 2014 3:47 pm

Just wondering if any of you have diagnosed MGUS, or other M-protein associated disorders, associated with or presenting as hives and swelling?

I have a low m-spike (0.2 g/dL) and am seeing GP tomorrow and onco-hematologist in two weeks. Am curious about facial hives and swelling as a manifestation of a blood disorder of some variety. Father died from multiple myeloma at age 37 and mother from lymphoma so on high alert here.

[ShihtzuJane]

Re: MGUS or myeloma with chronic urticaria & angioedema

by ShihtzuJane on Sat Dec 27, 2014 7:11 pm

Wow. What timing. I was just running a search, decided I'm smarter than my doctors for putting it all together. (And, my doctors seem pretty smart.) I have spontaneous angioedema, spon­taneous urticaria. And was just diagnosed two weeks ago with MGUS.

I have an appointment. in two weeks with my internist and have tons of questions to ask, including the association between the angioedema and MGUS, which I JUST found online.

[lys2012]

Re: MGUS or myeloma with chronic urticaria & angioedema

by lys2012 on Tue Jan 06, 2015 10:09 pm

I had chronic hives and lip swelling for about 5 years before my diagnosis. Hard to say if it was the myeloma since, after myeloma, I was diagnosed with autoimmune issues (thyroid disease and something as yet undefined), and found out I have an egg sensitivity! Happy to say I barely get a hive now that everything is under control!

[lodal853]

Re: MGUS or myeloma with chronic urticaria & angioedema

by lodal853 on Sun Apr 03, 2016 2:32 am

I recently was diagnosed with chronic urticaria (hives) and, when my blood work came back, I had MGUS

[cherylp]

Re: MGUS or myeloma with chronic urticaria & angioedema

by cherylp on Thu Apr 07, 2016 4:55 pm

I have been suffering with hives and angioedema for 2 years. I was diagnosed with MGUS four years ago. In August of 2015, I had a bone marrow biopsy and my cancer cells had increased to 30 percent. My M-spike was still low at 0.8 g/dL (8.0 g/L). They did a bone marrow biopsy because I was swelling over 10 times a month. I was diagnosed with acquired angioedema caused by myeloma. I received a stem cell transplant in January 2016 and have not had swelling since.

[mikepatti44]

Re: MGUS or myeloma with chronic urticaria & angioedema

by mikepatti44 on Tue Apr 12, 2016 2:08 pm

My husband has been dealing with acquired angioedema for six years and was just diagnosed with MGUS. His oncologist/hematologist didn't really pick up on any connection. In our minds, there certainly could be a connection. Now, seeing others with both of these going on makes us even more curious.

Who do we see to further investigate this connection? Where can we read about studies, etc. that are being done, or have been done?

Any insight that anyone could provide is most welcome.

[Rick D]

Re: MGUS or myeloma with chronic urticaria & angioedema

by Rick D on Tue Sep 20, 2016 12:23 pm

I had urticaria back in 2005. I kept a journal of what preceded my attacks, and discovered it was the sulfites in cheese, pepperoni, and wine.

I went to an allergist, who had read in the literature of a connection between urticaria and MGUS. He advised me to make an appointment with a hematologist / oncologist and, indeed, I did have MGUS.

The MGUS converted to multiple myeloma in 2013. I consider myself lucky that I was being checked every 6 months during the MGUS phase, and was able to start treatment quickly when it changed over to myeloma. I also have an allergy to sulfide drugs. I believe there may be a connection that should be explored between sulfites and MGUS / multiple myeloma.