I have a rash that started as very dry painful skin on my eyelids 2 months before diagnosis 4 years ago. I was MGUS then, smoldering myeloma now.
In 4 years it seems to locate itself around my left eye and mouth. It's dry itchy raised red sometimes open very painful areas of skin that look bruised.
I have seen numerous dermatologists, allergists and rheumatoid and immunology doctors with no diagnosis even after 2 biopsies and patch testing. My multiple myeloma doctor just shakes her head and says find another doctor.
Can this anyway be related to MGUS or smoldering myeloma?
Any insight, help, or answers would be so greatly appreciated. Thank you.
Forums
Re: Can rashes be related to MGUS / smoldering myeloma?
I have MGUS and I have a mild rash around my mouth, I think it might be peri-oral dermatitis. It's pretty mild and seems to flare up at certain times of the month/chin, so I wonder if it is hormonal for me. It's not itchy but can be a bit dry at times.
I mentioned it to the doctor and she was not worried. Not sure if it's related to MGUS or not.
The problem with having MGUS is that I always think that any minor ailment is related to it, when in reality all of us are going to get little health niggles from time to time, so it's difficult to know!
I mentioned it to the doctor and she was not worried. Not sure if it's related to MGUS or not.
The problem with having MGUS is that I always think that any minor ailment is related to it, when in reality all of us are going to get little health niggles from time to time, so it's difficult to know!
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ADUK
Re: Can rashes be related to MGUS / smoldering myeloma?
I have MGUS and have had a series of skin problems for the last 6 months. I have had all kinds of tests - allergy patch tests and biopsies to see if cosmetics trigger this. I wear no make up and my skin looks awful. My lips are red and scaly with little bumps and the skin just peels off. It looks like I don't take care of myself or wash my face.
Now my eyes are getting crusty with intermittant teeny blisters or plaques. They itch like crazy as well as my lips. I am on 3 different antihistamines and have tried several different creams from dermatogists that don't seem to work. I am also on Plaquenil [hydroxychloroquine] for Sjogren's, but my rheumy is boggled by what is happening with my skin.
I started taking photos of these "rashes" because whenever I go to the doctor they don't seem as bad. These pictures then made me realize that the hair on my face has little white waxy things clinging on the tiny hairs.
My lips feel like sand paper and the skin on my cheeks is rough from the hairy waxy items.
I then took a picture and noticed that I am turning yellow. My skin has a yellow cast and then my sweat that collects in creases is yellow.
I am very cautious about what I clean my face with and use only items that the EWG recommends.
I feel horrible, but looking horrible is even worse. I am not attending my class reunion because I don't want people to see me looking this way. It is embarrassing.
I really feel it has to do with my MGUS (I am IgG kappa) with abnormal FLC ratio. I do not have liver damage and am not anemic or low in vitamins.
I feel your pain VickiH ... you aren't the only one.
Now my eyes are getting crusty with intermittant teeny blisters or plaques. They itch like crazy as well as my lips. I am on 3 different antihistamines and have tried several different creams from dermatogists that don't seem to work. I am also on Plaquenil [hydroxychloroquine] for Sjogren's, but my rheumy is boggled by what is happening with my skin.
I started taking photos of these "rashes" because whenever I go to the doctor they don't seem as bad. These pictures then made me realize that the hair on my face has little white waxy things clinging on the tiny hairs.
My lips feel like sand paper and the skin on my cheeks is rough from the hairy waxy items.
I then took a picture and noticed that I am turning yellow. My skin has a yellow cast and then my sweat that collects in creases is yellow.
I am very cautious about what I clean my face with and use only items that the EWG recommends.
I feel horrible, but looking horrible is even worse. I am not attending my class reunion because I don't want people to see me looking this way. It is embarrassing.
I really feel it has to do with my MGUS (I am IgG kappa) with abnormal FLC ratio. I do not have liver damage and am not anemic or low in vitamins.
I feel your pain VickiH ... you aren't the only one.
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blh121765
Re: Can rashes be related to MGUS / smoldering myeloma?
I think it would be difficult to ascribe symptoms to MGUS because most research has been on myeloma. However, here is one study that might be of interest as follows:
"Myeloma Precursor Disease MGUS May Increase Risk Of Developing Infections", Myeloma Beacon, February 22, 2012.
It shows that many of us experience a higher rate of infections than non-MGUS individuals.
Hope this helps a little! There are a bunch of excellent articles on The Myeloma Beacon.
"Myeloma Precursor Disease MGUS May Increase Risk Of Developing Infections", Myeloma Beacon, February 22, 2012.
It shows that many of us experience a higher rate of infections than non-MGUS individuals.
Hope this helps a little! There are a bunch of excellent articles on The Myeloma Beacon.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Can rashes be related to MGUS / smoldering myeloma?
Following up on Toni's posting (thanks Toni!), these link will take you to reverse chronological lists of all Beacon news and opinion articles related to MGUS and smoldering myeloma:
https://myelomabeacon.org/tag/mgus/
https://myelomabeacon.org/tag/smoldering-multiple-myeloma
https://myelomabeacon.org/tag/mgus/
https://myelomabeacon.org/tag/smoldering-multiple-myeloma
Re: Can rashes be related to MGUS / smoldering myeloma?
Thanks for all your replies. So sorry to read some of what you all have going on as well. I can add to this that mine got worse over time and subsequently I am smoldering myeloma, now no longer MGUS. Hope to find out what connection if any lies between it.
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vickih
Re: Can rashes be related to MGUS / smoldering myeloma?
Hello,
Have your doctors given any consideration to POEMS disease? It too is a plasma cell dyscracia that affects the skin and presents with low amounts of M-protein but doesn't typically affect the bones.
Good Luck!
J
Have your doctors given any consideration to POEMS disease? It too is a plasma cell dyscracia that affects the skin and presents with low amounts of M-protein but doesn't typically affect the bones.
Good Luck!
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Can rashes be related to MGUS / smoldering myeloma?
Hi and thank you,
Yes I have asked about POEMS but she didn't seem to think so. She keeps telling me find another dermatologist , find another rheumatologist. I have been to several.
Yes I have asked about POEMS but she didn't seem to think so. She keeps telling me find another dermatologist , find another rheumatologist. I have been to several.
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vickih
Re: Can rashes be related to MGUS / smoldering myeloma?
I started out with MGUS 3 years ago, then to SMM. I get rashes on my forearms for no apparent reason. When I have them they are very itchy and red with spots. I have had skin biopsy done when I had a flare but didn't show anything as to what it was. I show the doctor's and they just say it is some sort of contact dermaitis. I have also started taking pictures of the flare ups. Sometimes I will get them on my face, but not as often. Sometimes the doctor's make me feel like I am crazy with some of the symptoms, at least for now I have found a doctor that will listen to me. Blessings and prayers to all going through this.
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brigid430
Re: Can rashes be related to MGUS / smoldering myeloma?
Hello,
I have pretty severe immunoparesis [suppressed levels of the "uninvolved" immunoglobulins] - not sure if skin sufferers posting here also do?
But anyway, the immune system is very connected to our histamine response (allergies) and I also get some pretty significant reactions to high histamine foods due to intolerance, such as itching, insomnia, palpitations. You may want to try to limit high histamine foods or watch for a connection to consumption and symptoms. Also, I often take a Benadryl (diphenhydramine) at night when I eat out or at other peoples homes to alleviate the symptoms.
Best
J.
I have pretty severe immunoparesis [suppressed levels of the "uninvolved" immunoglobulins] - not sure if skin sufferers posting here also do?
But anyway, the immune system is very connected to our histamine response (allergies) and I also get some pretty significant reactions to high histamine foods due to intolerance, such as itching, insomnia, palpitations. You may want to try to limit high histamine foods or watch for a connection to consumption and symptoms. Also, I often take a Benadryl (diphenhydramine) at night when I eat out or at other peoples homes to alleviate the symptoms.
Best
J.
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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