Looking for info on medications for Bullous pemphigoid

Posted by Earl Johnson @earljohnson5030, May 10, 2016

I've been diagnosed with Bullous pemphigoid and I need to find if there are any drug prescriptions other than prednisone that can helped. I'm concerned about possible side effects of that drug.

Earl

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@becsbuddy

@debwal Welcome to Mayo Clinic Connect! Members share their concerns about their health and give tips and solutions to other members. I am sorry for the problems with the Bullous pemphigoid. What do you do to protect your clothes from a burst blister?
https://www.mayoclinic.org/diseases-conditions/bullous-pemphigoid/symptoms-causes/syc-20350414. It sounds like you have good control over your condition
This information from The Mayo Clinic is very informative and mentions treatment. You said that CellCept and chemotherapy “isolates you from being social.” Can you tell me more about your concerns with them?

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I was taking cellcept during the beginning of Covid.
I was advised cellcept is an immune suppressant and to avoid crowds and unvaccinated visitors.
After the chemo I needed to allow my body to rebuild my immune system.
I’ve had 1 clear month from blisters and then the blisters erupted on my hands, arms, torso, legs , toes, and neck.
My original dermatologist moved and I have a new dermatologist who had consulted with my previous doctor that suggested chemotherapy.
I had one clear month of no blisters.
I had chocolate and Italian food and the blisters multiplied 2 fold.
After avoiding cheese and chocolate for 2 1/2 yrs.

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@debwal

I was taking cellcept during the beginning of Covid.
I was advised cellcept is an immune suppressant and to avoid crowds and unvaccinated visitors.
After the chemo I needed to allow my body to rebuild my immune system.
I’ve had 1 clear month from blisters and then the blisters erupted on my hands, arms, torso, legs , toes, and neck.
My original dermatologist moved and I have a new dermatologist who had consulted with my previous doctor that suggested chemotherapy.
I had one clear month of no blisters.
I had chocolate and Italian food and the blisters multiplied 2 fold.
After avoiding cheese and chocolate for 2 1/2 yrs.

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I was treated successfully with a combination of prednisone (40 for 3 Days
20 for 3 days
10 for 3 days
5 for 3 days) and ClobetasolL 0.05% cream
Niacinamide 500 mg one tablet three times with food
I have not had any breakouts since. It is important to get a dr that is familiar with Bullous Pemphigoid.

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There are newer biologic drugs that can be used
off label for BP. They are not yet approved for pemphigoid. They show promising results in recent medical reports.

Rituxan and Dupixent have been used successfully on the market for other disease indications.
The reason they are not more often used is cost and
insurance coverage.

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@debwal

I was diagnosed when I was 67 in 2020.
Topical salves don’t work, prednisone is a bandaid, Cellcept and Chemotherapy isolates you from being social.
Diet makes a big difference in limiting the occurrence of blisters.
I know I have to avoid dairy, chocolate, tomatoes and citrus.
I developed a blister that almost closed by throat after eating citrus.
I had several blisters erupt in my navel, I was packing a cotton ball to cushion the blisters.
Then developed a sensitivity to adhesive.
I’m hoping to eat chocolate and cheese again someday.

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I am so sorry to hear about your disease progression. I was just diagnosed thru a blood test in August. I am 75. I had one rather large blister that has healed by conservative treatment, after my dermatologist drained it, that included rinsing with soap and water, applying Aquaphor ointment and bandaging until it healed. My derm suggested I use a Rx steroid cream but I decided not to because I considered the side effects to be an issue for me. Everyone is different in how their body reacts and responds to treatment. I use a tiny amount of over the counter hydrocortisone cream when I see a little blister starting to form and that dries it up. On the homeopathic medicine side, I have began taking a cell salt Nat Mur that regulates water in the body which is how the blisters form between the layers of the skin. An anti-inflammatory diet avoiding sugary foods and drinks may help calm the immune system. I wish you well.

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I have had mucus membrane pemphigoid blisters in my mouth for over 30 years. Only through a university dental school lab we’re they able to identify the biopsy. I have been treating it all these years with prednisone and Dapsone. It was extremely rare at that time, and still rears its ugly head from time to to time, especially in times of stress or dental work.
I am now breaking out on the rest of my body with what is thought to be pemphigus, but biopsies are inconclusive So far.

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