Recurring severe mouth ulcers and MGUS

I’ve never heard of MGUS but search for “Behçet’s” (beh-chetz{sounds like Chet Atkins}). Also, it wouldn’t hurt to have a dermatologist look at your mouth.

@djm123, you may be interested in these related discussions to help manage the painful mouth sores.
- Mouth Sores from chemo: When do they go away?
https://connect.mayoclinic.org/discussion/mouth-sores/
- Anyone else dealing with painful mouth sores and burning mouth
https://connect.mayoclinic.org/discussion/anyone-else-dealing-with-painful-mouth-sores-and-burning-mouth/
- Sores in mouth
https://connect.mayoclinic.org/discussion/sores-in-mouth/
@nancy1900 @gingerw may have experiences to share.

@djm123, did you learn anything from the blood tests?

I too have MGUS diagnosed about 7 years ago. Canker sore started about 1 year ago. Come & go, last 3-5 weeks, good for about 2-3 months, then back again. Didn’t mention it at last visit with Hemotologist as didn’t occur to me they would be because of MGUS. But since they keep recurring did some research and have found it can be a sign. So, no help to you other than to let you know you aren’t alone. Hope we all get some results as they are painful and annoying. Good luck.

Yes I have MGUS and recurring mouth sores. Not as often now. A month ago was the last time that I had to take medicine. My primary care doc sent me to a breast cancer oncologist/ hematologist for my MGUS care. He has retired now. So I don’t know what I should do.

MGUS can be associated with autoimmune diseases, such as lupus, and it would be reasonable to be checked for the auto immune diseases that can cause mouth or nasal ulcers. Oral ulcers can be quite painful and it helps when present to avoid acidic and spicy foods such as tomatoes, citrus fruits, acidic, salad dressing, with vinegar, etc. There’s also products that can be applied to the sores like viscous lidocaine or Oragel that temporarily numb the ulcers. I hope you get some answers to your question and some relief when the ulcers occur.

@itoldyouiwassick I have mgus and have developed neuropathy in my feet and a sore on my tongue. My m spike is .4. Does anyone have an idea if this happens with mgus?

I had some difficulties with mouth sores too when diagnosed with Smoldering Multiple Myeloma (SMM, which MGUS can lead to). I discovered Zinc and Lysine help. A natural mouthwash called Vita-Myr, made with Myrr oil, Clove oil, Zinc and Folic acid really helps. For me it cleared any mouth sores within 3 days. Sometimes needed to gargle 3-4 times a day, but it’s worth it. The supplement Lysine helps keep the sores at bay. I rarely need it now, but always have some at hand. It’s an auto-immune thing, I believe. Good luck.

@melbye Neuropathy can come with MGUS (it was how mine was diagnosed 10 years ago). If you haven't checked in with your oncologist for a while, it would be good to contact him/her on the mouth sour. Mouth sores tend to come with MM, but can be due to other things.

Hi - I never had mugus but I did gather ulcers with lupus and from GVHD. I have found a steroid solution swish and spit, used 2-3 times per day helps get rid of them. I have been prescribed either a prednisolone or dexamethasone oral solution. Make sure the doctor write for solution and not elixir and have them write DAW (dispense as written) or you may be given the elixir which has red dye and alcohol that might be irritating (that being said I found even the elixir helpful when I had lupus). Also important- keep in mouth for 2-4 minutes and then spit out and do not eat or drink anything for at least 20 minutes. Also if you research dentists (DMD) that specialize in oral GVHD or oral lichen planus (there are very few) they will be very knowledgeable- much more so than even my transplant team or rheumatologist were. And they may suggest various foods to avoid etc. Good luck.

Good to collaborate here with others. Dxd MGUS 08/20 IgG Kappa light chain. Just started having "rashes" of canker sores in mouth. Follow very good oral hygiene.