MGUS & Rash

Posted by samraz @samraz, Feb 22, 2023

Hi everyone, I got diagnosed with MGUS last month with my GP and still waiting to see Hematologist.

I have also got some rash in my body that is not itchy but haven't gone for last 6 weeks. I am going to see dermatologist tomorrow, but I want to know if these rashes are related to MGUS or cancer? I live in Canada, so it means I have to wait until specialist see me.

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@kaysel

Hello:
I’ve had a terrible rash on my arms and legs for over six months. That’s how I was diagnosed with MGUS. My dermatologist suspected a kidney ailment. Then my kidney doctor suspected cancer.

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Hi @kaysel. Thank you for sharing your experience with how you were finally diagnosed with MGUS. I’m happy you found your way to Mayo Connect where you’re in good company with other members who have similar symptoms.

You might be interested in learning a little more about your new diagnosis. Here are two informational articles which give a good overview of MGUS.
https://www.healthline.com/health/how-serious-is-mgus
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https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
Do you still have the rash? Are you currently seeing a hematologist for evaluation?

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@hels

Hope all goes well with your appointment ..sorry not sure about rash i was diagnosed just before xmas so still new to this myself x

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Thank you. We have been to three dermatologist, oncologist, allergist, now heading to hematologist. No medications have worked so far. Doing light therapy three times a week. Sometimes it feels better and other times it is the same deadly itch, unable to sleep. Will keep trying.
Any improvements, I will post.
Mark

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I don't know what the itchy rash is related to, but do know that neither do any of the doctors I visited. (Oncologist, three dermatologist, allergist) No prescription medication has worked, no injections worked, now doing light therapy, three times weekly. Think it helped and then it starts again. The difficult time is at night. Impossible to sleep. If I find anything that helps I will post the information.

Thanks for your reply. Mark

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I. really appreciate all the great ideas offered on this site. Thank you to all who have written. I will let you know any new developments in my search for relief.

Mark

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@loribmt

Hi @kaysel. Thank you for sharing your experience with how you were finally diagnosed with MGUS. I’m happy you found your way to Mayo Connect where you’re in good company with other members who have similar symptoms.

You might be interested in learning a little more about your new diagnosis. Here are two informational articles which give a good overview of MGUS.
https://www.healthline.com/health/how-serious-is-mgus
~~
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
Do you still have the rash? Are you currently seeing a hematologist for evaluation?

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Yes, but holding off for a few weeks. I started Dupixet injections today got two shots. Hoping this will help. I do see an oncologist but he has been of very little help.

Thanks for asking.

Mark

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@markgventnor

I don't know what the itchy rash is related to, but do know that neither do any of the doctors I visited. (Oncologist, three dermatologist, allergist) No prescription medication has worked, no injections worked, now doing light therapy, three times weekly. Think it helped and then it starts again. The difficult time is at night. Impossible to sleep. If I find anything that helps I will post the information.

Thanks for your reply. Mark

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If you are not already doing so, consider keeping a food log. In my case, the rash I had for decades was gluten intolerance (now celiac [14 years]). I also have MGUS (no rash), hypothyroid, and colageneous colitis (7 years). Because of the food log I saw that legumes and NSAIDs triggered the colitis. I'm also sensitive to sap of some trees (woodturner), perfumes, some processed foods, and other odds and ends. Sometimes sensitivities can worsen rashes and other autoimmune syndromes. I'm 69 and just take synthroid and various vitamins. I'm on mostly a FODMAP diet.

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Hi @markgventnor, welcome to the forum. It’s interesting that you posted about a rash as I have a small place on my ankle that has not generated much interest from any of my assorted “ist” physicians. I haven’t seen a dermatologist yet, but I did have my hem/onc doc and PCP take a look at it. The consensus was that it was a reaction to a bug bite.
It’s frustrating not to get answers and since it’s been six weeks since it emerged, complete with swelling, tenderness and itching, I’m guessing that by the time the dermatologist actually sees me I will have adapted to this new normal.
At any rate, there are skin conditions related to MGUS (thus MGDS) which should be looked into. I suggest not doing a deep dive into Dr. Google and talk to your hem/onc doc once you get in the room. Maybe they can expedite your appointment since you are symptomatic.
Best of luck. Let us know what you find out.

Patty

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I had a mysterious rash on both of my lower legs that lasted over 6 months. The dermatologist tried various creams and pills, including steroids. Finally, he tried Naltrexone. The rash disappeared within days, and has not returned.

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@pmm

Hi @markgventnor, welcome to the forum. It’s interesting that you posted about a rash as I have a small place on my ankle that has not generated much interest from any of my assorted “ist” physicians. I haven’t seen a dermatologist yet, but I did have my hem/onc doc and PCP take a look at it. The consensus was that it was a reaction to a bug bite.
It’s frustrating not to get answers and since it’s been six weeks since it emerged, complete with swelling, tenderness and itching, I’m guessing that by the time the dermatologist actually sees me I will have adapted to this new normal.
At any rate, there are skin conditions related to MGUS (thus MGDS) which should be looked into. I suggest not doing a deep dive into Dr. Google and talk to your hem/onc doc once you get in the room. Maybe they can expedite your appointment since you are symptomatic.
Best of luck. Let us know what you find out.

Patty

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Patty, Thank you for your caring response. I hope you find some relief for your ankle.

I have started Dupixent...got two shots yesterday and two more in two weeks. The one weekly after that. I am hoping for positive results. We shall see???

Mark

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@susanh824

I had a mysterious rash on both of my lower legs that lasted over 6 months. The dermatologist tried various creams and pills, including steroids. Finally, he tried Naltrexone. The rash disappeared within days, and has not returned.

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Susan, Thanks. I am writing that name down and when I see the dermatologist I will inquire about it. I started Dupixent yesterday. Two shots followed by Two shots in two weeks. Then once weekly. Too soon to say if it has helped. I hope so.
Mark

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