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Can someone offer any help on this disease
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.
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
Hi I had erythema multiforme , and I was admitted to the hospital for a week. But the actual disease lasted for about 3 weeks . I was treated with multiple pain medications, viscous lidocaine , “ magic” mouth wash, anti inflammatory meds, I also got an iv with nutrients and fluids because I couldn’t eat. Multiple times a day they also treated me with gauze and a prescription type water canister to keep my lips clean and on top of the lidocaine they put Vaseline. And for the rest of my body they gave me a lidocaine ointment . I really hope you’re able to get help I know how excruciating and scary this disease can be .
Hello @kmichellewm, welcome to Connect. Thank you for sharing your experience with erythema multiforme. It really helps others know that they are not alone and helps them know what others have done for treatment.
Do you have any other suggestions that helped you get through the day?
Thanks, these are the same things that my grandson are given, But you said you had this did it go away
@babyur4me Yes it went away after about a month . I’ve had a couple very small episodes since but it did go away . The main thing for me was keeping everything sterile and moisturized . And trying to get as much sleep as possible when I was given pain medicine.
@johnbishop thank you . Yes it was a very traumatic time for me so anything I can do to help others .
The main thing that helped me get through it was keeping my pain under control to help with the stress of the constant pain, sterile water, lidocaine and as much Vaseline as possible on top to keep everything moisturized that helped a lot
@babyur4me sent me a private messager and asked me to post a message for her…
You can send this to everyone. I am Darren's grandmother we went to UNIV of MD yesterday and again were disappointed. Since i am having surgery on the 21st, I will have to put trip to Mayo on hold.
I have lost connection. I sent John a message that Mayo Clinic doesn’t take medcaid
@babyur4me — here is the discussion you are looking for. I did receive your private message.
> Groups > Autoimmune Diseases > Help on treatment for Erythema Multiforme Major
Hi @babyur4me, I have moved your message to the original discussion, so everything is in the same place. Your notifications are still turned on, so you should receive an email notification when a new post is made. If you have any issues connecting, please send me a message using this form https://connect.mayoclinic.org/contact-a-community-moderator/
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