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Pemphigus Vulgaris: What treatment helps you?

Autoimmune Diseases | Last Active: Jul 23 10:52am | Replies (17)

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Profile picture for glongdmd @glongdmd

Greetings, I have either PV or MMP but my 2 dermatologists can't agree on which. I think it is PV. Treatment from the start was prednisone because I had no idea what it was. It's not a common disease. It is significantly worse intraorally in my case. Minor skin bullae in the early going. Once I got the dermatologist involved I was put on Dapsone 25mg,4 tabs a day initially. Dapsone is actually a sulfone antibiotic which has some significant antiinflammatory actions. Very well tolerated. I used clobetasol on the skin lesions but they were never a big part of my experience and have all but completely resolved and im going on 4 years post onset. After some research I started using a mouthrinse of 2 parts distilled water, 1 part Peroxyl mouthrinse and 1 part DMSO. DMSO has known and documented antiinflammatory properties and a huge safety profile. It has worked better for me than anything else in the mouth. I would say that at this point in the process I am 85% better than initially with only minor tweaking of the Dapsone dosage and increased rinse usage during the uncommon outbreaks that occur very infrequently. I have asked my doctors about Rituximab infusions but they seem to be reluctant to use it. Actually, at this point I don't know if I really want to pursue it due to the significant response to the current treatment. I still have to behave as far as dietary selection. I would kill for a handful of potato chips but that would be asking for trouble. Really acidic items can be uncomfortable but manageable. I have recently started a semi vegan diet to reduce gluten as I hear that has helped some folks. I recommend doing a lot of reading. This condition is not encountered much by physicians or dentists and treatment varies greatly. If you can avoid corticosteroids longterm I would do it.

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Replies to "Greetings, I have either PV or MMP but my 2 dermatologists can't agree on which. I..."

@glongdmd
I agree: "I recommend doing a lot of reading."
I experienced two severe episodes of pemphigus vulgaris, each lasting several months, before discovering that I had a genetic predisposition and that certain medications may have triggered the condition.

Medication triggers: In some cases, pemphigus vulgaris can be induced by specific drugs. Commonly associated medications include blood-pressure drugs such as ACE inhibitors, chelating agents, and certain antibiotics such as Bactrim.
Bactrim or Septra belongs to sulfamethoxazole–trimethoprim (co-trimoxazole).

Genetic susceptibility: Certain genetic markers, including HLA-DR4 and HLA-DRw6, are associated with a significantly increased susceptibility to developing the condition.

May I offer this article:
Pemphigus Vulgaris
https://www.hopkinsmedicine.org/health/conditions-and-diseases/pemphigus-vulgaris