Dear Doctor: Patient with rare autoimmune disease – bullous pemphigoid – seeks a new treatment

DEAR DR. ROACH: I am a 73-year-old woman who is in otherwise good health, but I was diagnosed with bullous pemphigoid, a rare autoimmune disease, in January 2022. I have been treated by three different dermatologists with doxycycline, prednisone and Dupixent. The only effective treatment has turned out to be prednisone.

I have been taking a dosage of 5-10 mg depending on the severity of the disease flare-up for the past three years. I really dislike the side effects of weight gain and bruising easily with prednisone. The skin blisters and intense itching cause me to take it for relief. My doctor has suggested looking into a treatment like Imuran, but the side effects seem daunting.

I would appreciate any thoughts you might have. — D.B.

ANSWER: You’re exactly right that bullous pemphigoid is a rare autoimmune blistering skin disease, which usually occurs in older adults. Your dermatologists have used the standard of care with doxycycline and prednisone. They even put you on one of our most powerful steroid-sparing medications, dupilumab (Dupixent), which is effective for 92% of people who take it, so you were quite unlucky that it didn’t help at all.

Other options to replace or reduce the dose of prednisone (besides Imuran) include dapsone, methotrexate, and mycophenolate, which are all medicines that have been used for many years and are relatively safe when used cautiously by experts.

It’s important to consider the long-term effects of prednisone on your immune system, blood sugar, blood pressure, and risk of osteoporosis when considering alternative treatments. I would really consider a steroid-sparing medication.

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