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babyur4me
@babyur4me

Posts: 9
Joined: Sep 28, 2018

Help on treatment for Erythema Multiforme Major

Posted by @babyur4me, Fri, Sep 28 10:04am

Can someone offer any help on this disease

REPLY

Hello @babyur4me — Welcome to Connect. I did a search through Connect and found an older discussion that went unanswered. I'm tagging that member @jackie3 to see if she is still following Connect and may be able to offer some suggestions for you. I did find some information on a few websites that may be helpful and have listed them below.

The American Osteopathic College of Dermatology – Erythema Multiforme
https://www.aocd.org/page/ErythemaMultiforme

The American Family Physician – Erythema Multiforme
https://www.aafp.org/afp/2006/1201/p1883.html

Healthline – Erythema Multiforme Information and Treatment
https://www.healthline.com/health/erythema-multiforme

@babyur4me has your doctor provided any treatment plan for you or have you found anything that helps you?

John

@johnbishop

Hello @babyur4me — Welcome to Connect. I did a search through Connect and found an older discussion that went unanswered. I'm tagging that member @jackie3 to see if she is still following Connect and may be able to offer some suggestions for you. I did find some information on a few websites that may be helpful and have listed them below.

The American Osteopathic College of Dermatology – Erythema Multiforme
https://www.aocd.org/page/ErythemaMultiforme

The American Family Physician – Erythema Multiforme
https://www.aafp.org/afp/2006/1201/p1883.html

Healthline – Erythema Multiforme Information and Treatment
https://www.healthline.com/health/erythema-multiforme

@babyur4me has your doctor provided any treatment plan for you or have you found anything that helps you?

John

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Thanks John, the medication they prescribe does not help. This is my 29 year old grandson. it starts with mouth Ulcers, his hands and face break out with sores. He is constantly being hospitalized because it takes 5 days to go away.

@babyur4me do you know what medication the doctors prescribed for him?

I also use Google Scholar (https://scholar.google.com/) when searching for new treatments or trials. I did a search just now and found an article from the Journal of Dermatological Science, Volume 92, Issue 1, October 2018, Pages 38-44 which may provide some new information:

The effect of levamisole in the treatment of recalcitrant recurrent erythema multiforme major: An observational study
https://www.sciencedirect.com/science/article/pii/S0923181118303025

yes,
prednisone,Valacyclovir,Lidocaine mouth wash and Azithromycin for a 5 day treatment after being hospitalized. His Potassium usually drops that he needs IV fluids

@johnbishop

@babyur4me do you know what medication the doctors prescribed for him?

I also use Google Scholar (https://scholar.google.com/) when searching for new treatments or trials. I did a search just now and found an article from the Journal of Dermatological Science, Volume 92, Issue 1, October 2018, Pages 38-44 which may provide some new information:

The effect of levamisole in the treatment of recalcitrant recurrent erythema multiforme major: An observational study
https://www.sciencedirect.com/science/article/pii/S0923181118303025

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i just looked it up, thanks i will ask his Doctor

Hi, John were you able to connect with Jackie3 or anyone else in reference to Erythema

@babyur4me

Hi, John were you able to connect with Jackie3 or anyone else in reference to Erythema

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Hi @babyur4me, sadly I think @jackie3 is no longer participating on Connect. Her last post was January 2012. I had thought maybe tagging her would bring her back to Connect so she could share treatment information with you.

I'm not sure if you are aware of the National Organization for Rare Disorders website but it may provide some information that is helpful.
https://rarediseases.org/rare-diseases/erythema-multiforme/

@babyur4me how are you doing? Have you found anything that helps?

John

I hope your grandson has access to specialists in Dermatology and rare disease treatment. My husband had erathema multiforme 3 times. We were fortunate to discover the trigger the first two times. First was a prescription for a statin; next was a viramin supplement; and the last may have been other medical conditions. He was treated by his internist the first time; by his regular dermatologist the second; and referred to the special wound treatment department of a local hospital for the third—which was the most serious. We were able to get home health care for this treatment since I was recovering from hip replacement. That was over three years ago and he’s had additional major surgery since then with no recurrence. I hope your grandson gets relief soon

@verilee1776

I hope your grandson has access to specialists in Dermatology and rare disease treatment. My husband had erathema multiforme 3 times. We were fortunate to discover the trigger the first two times. First was a prescription for a statin; next was a viramin supplement; and the last may have been other medical conditions. He was treated by his internist the first time; by his regular dermatologist the second; and referred to the special wound treatment department of a local hospital for the third—which was the most serious. We were able to get home health care for this treatment since I was recovering from hip replacement. That was over three years ago and he’s had additional major surgery since then with no recurrence. I hope your grandson gets relief soon

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“Vitamin” supplement

Thank you. he doesn't take any meds. we have seen Dermatologist and no help. His mouth breaks out with Ulcers and his hands

@babyur4me

Thank you. he doesn't take any meds. we have seen Dermatologist and no help. His mouth breaks out with Ulcers and his hands

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I am so sorry. I used to have horrible mouth ulcers with mixed connective tissue disease and as a child, my palms were constantly blistered and very painful. Empathy won’t help much, but as a grandmother I understand your pain for your grandson

Hello @babyur4me,

Since symptoms of some other disorders related to Erythema Multiforme can be quite similar, I sincerely encourage you to read these discussions on Connect; please feel free to post your message in these conversations as well:
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– chronic erythema nodosum https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum-1/

I'm also tagging @alexahercamp @esfourplus @kgjd97 @sebley12 @elizamail @sgerard @kimmy63 @jillianm @jgodby10 @freemary @beff2468 @travelgirl ; as they might be able to offer some more insights and information for your grandson.

@verilee1776

I am so sorry. I used to have horrible mouth ulcers with mixed connective tissue disease and as a child, my palms were constantly blistered and very painful. Empathy won’t help much, but as a grandmother I understand your pain for your grandson

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what did you do? did they just go away.

@babyur4me

what did you do? did they just go away.

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The worst ones would last three weeks and seemed to be triggered by stress. At the time, my diagnosis was lupus (perhaps a part of MCTD—I’m not a medical professional). Lupus is known for these ulcers, I understand. I always used Biotene toothpaste and mouthwash as well as many tubes of an oral analgesic. I think it was orabase. The best one contained tannin but it stopped being available. I began drinking a lot of tea that contains tannin. Stress was a constant in the work I did and I also became caregiver for my 86+ year old mother who lived until almost 94, and later my husband. As the symptoms of my autoimmune disease morphed into RA and OA, the mouth ulcers receded in frequency. These illnesses are so complex. My husband and I have had several different dermatologists ; as you know, some physicians are more knowledgeable or dedicated and seem to have more resources for information. I would encourage your grandson to seek another opinion—preferably Mayo if at all possible. The communication among physicians in different practices often falls by the wayside, I’ve discovered. Dermatology and rheumatology are tough fields and often seem to have no solid answers. Please don’t give up hope for successful treatment.

Thank you. The Dermatologist that we have consulted have not been helpful

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