Does anyone have the autoimmune disease that causes blisters all over

Posted by indianachrissy @indianachrissy, Sep 20 9:01pm

Does anyone have or know someone that has the autoimmune disease that causes fluid-filled blisters all over your skin? I was diagnosed in 2019 and still do not know which kind it is. They've put me on predisone and now Dupixent injection pens. I stopped the Methotrexate due to extreme hair loss and it didn't seem to affect me at all. Any info would be greatly appreciated. I feel like I'm the only one with this kind but obviously I'm not.

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SusanEllen66 Susan McMichael | @SusanEllen66 | Sep 20 10:15pm

@indianachrissy
So, you were diagnosed with a disease and you don’t remember the name of it. Is that correct?
Can you call your doctor and ask?

We are not doctors, so we are not allowed to make a diagnosis. The symptoms you have described can be many things.
Please ask a doctor so that you can get correct information.
Keep us informed please.

swalex | @swalex | Sep 21 1:22am

I would ask the doctor if it is:
Bullous Pemphigoid: https://my.clevelandclinic.org/health/diseases/15855-bullous-pemphigoid
or
Pemphigus: https://my.clevelandclinic.org/health/diseases/21130-pemphigus

cjselva | @cjselva | Sep 21 8:06am

Yes, I have it. It's called bullous pemphigoid. There are other types such as pemphigus vulgaris. This begins at the mucous membranes if I'm not mistaken. My condition is bullous pemphigoid. It is fluid filled blisters on the body, limbs. I was hospitalized in October 2025 for this and once again in August 2026. In all, I have suffered three flare up incidents. I am on Prednisolone (oral), immunosuppessant (Cellcept), calcium and Vitamin D supplements (to avert steroid induced bone issues) and occasionally on metformin and glyclazide for steroid induced hyperglycemia. I also use clobetasol propionate (steroid ointment) for itch on the skin and on the blister areas to prevent new blisters flaring up. Initially, I was given Azathioprine immunosuppessant which my body tolerated well at first but when the dosage was increased, my liver enzymes became elevated. I was taken off the Azathioprine and was advised to go for biologic (Dupixent/Dupilumab) injection. It is costly and also has it's own adverse effects though said to be not that bad. I opted instead for Cellcept (oral tabkets). So far, it is good for me, by the Grace and Mercy of my Lord Jesus (no hidden agenda please. My apologies. Not my intention to offend).
I wish you all the best in your period of recuperation and for quick recovery to full good health. All the best.

John, Volunteer Mentor | @johnbishop | Sep 21 8:25am

Hello @indianachrissy, I would like add my welcome to Connect along with @SusanEllen66, @swalex, @cjselva and others. You are definitely not alone. There are quite a few related discussions that you might find helpful. Here's a search of Connect with links to member discussions and comments - https://connect.mayoclinic.org/search/discussions/. Mayo Clinic also has a specialty clinic on the various related autoimmune conditions. Here's a short video with more information: