What treatment is currently available for Melkersson-Rosenthal Syndrome, an auto-immune
Treatment for MRS with noted improvements using IMMUNOMODULATORS
Melkersson-Rosenthal Syndrome (MRS) which also goes by the name of Miescher-Melkersson-Rosenthal syndrome (MMRS) is a recognized clinical TRIAD of facial abnormalities involving weakness of half the face, swelling of the lips, and fissured or furrowed tongue. If your case involves all 3 of these items then, it is appropriately referred to as MRS. If it only possesses 1 or 2 of the 3 then, it probably should not be referred to as MRS but rather by a name that identifies exactly which component is being affected such as the lips (cheilitis) or the tongue (glossitis), etc.
You've not mentioned what if any treatments you've ever tried since there are always "treatments" for just about everything known to the man. What you're really asking about are TREATMENTS that impact the disease process or potentially "cure" the problem. Unfortunately, we cannot claim a cure to the condition since you've correctly pointed out that it is classified as an autoimmune disorder for which no cure exists to date.
However, treatments that have some value to some people and keep them under reasonable control include corticosteroids in injectable form that can be placed directly into the lesions, antibiotics (metronidazole and pingangmycin, tetracycline), and NSAIDS for pain and inflammation. There are also diets that are promoted that can help at least 50% of subjects with the cheilitis and glossitis symptoms which is cinnamon and benzoate FREE.
Obviously, these have limited value and can cause other untoward effects when used over time.
Some cases actually resolve or go into remission on their own though flareups may occur that can be protracted.
More modern day therapies include things such as: Methotrexate, Tacrolimus, infliximab,
Dapsone, Triamcinolone and dapsone injections, and mast cell stabilizers such as KETOTIFEN (ophthalmic) which prevents mast cell degranulation and inflammatory responses.
I do hope this information has given you some perspectives on more up to date treatment options for your problem of MRS. Please consider closing this QUERY if I've provided satisfactory information with some positive feedback and a 5 star rating if you feel it is deserving.
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Neurologist who specializes in autoimmune disorders
MRS is actually classified as a rare NEUROLOGICAL DISORDER of the autoimmune type therefore, I would look to land a neurologist who has some specialty knowledge of autoimmune disorders.
As it coincidentally happens I have a couple of patients in my practice who are in their early 20's and 30's who have facets of this problem (1 has the Cheilitis only while the other is full blown MRS) so that's how I know that you're not looking for a dermatologist. You are correct it is a rare disorder for sure.
Estimates are under 10 per 10,000 are affected by MRS so definitely it's not something that many trainees will have ever seen let alone treated until they'd been in practice for quite some time.
Once again, many thanks for the followup question. I hope I've given you a bit more information to follow up on and wish you both the best in securing a physician who can rope this one in for you. I'd even greatly appreciate a followup note to let me know how you're doing and what type of doc you finally decided to see. I say NEUROLOGY is your best bet....but I'm BIASED! HAHA!
If I've provided all the answers to your questions would you do me the greatest favor by r closing this QUERY if I've provided satisfactory information with some positive feedback and a 5 star rating if you feel it is deserving.
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