My sympathies to all BP sufferers. I was diagnosed two years ago, after 4 months of undiagnosed suffering. (I was told to just stop scratching!) My BP is an autoimmune reaction to Nuvolumab which I took for two years because of a stage 4 melanoma outbreak. (Now tumor free!) I went on Dupixent immediately and it resolved the blisters on my scalp very quickly. (My bald scalp was the site of my melanoma tumor.) The itching never disappeared. I am now experiencing renewed issues with dry skin, (of course I moisturize daily) small red spots that sometimes bleed, roughness, scaling and peeling. I get some relief applying Gold Bond Anti-itch body lotion (over the counter). I wonder if my Dupixent has run its course. ChatGPT tells me a next line for refactory or post Dupixent treatment may be Doxycycline 100 mg and Nicotinamide 500mg. Has anyone had a post-Dupixent recurrence? anyone have experience with these drugs? Has anyone had a post-Dupixent recurrence?
@ricknorth
I have been on Dupixent for a month. My itching better. My blisters are not as bad. If they start they go away fast. My pemphigus vulgaris is horrible
My mouth hurts all the time. When the barometric pressure changes extreme body pain. They say nothing yet for the pemphigus. Anyone with this?
So sorry about your pemphigus vulgaris. I cannot imagine living with the pain you describe. I have not noticed any changes in my pemphigoid with barametric pressure. I live at 7000 feet and go up to 12,000 in the mountains so pressure changes are a regularity in my life. I hope you blisters disappear with a little more experience with Dupixent.
My sympathies to all BP sufferers. I was diagnosed two years ago, after 4 months of undiagnosed suffering. (I was told to just stop scratching!) My BP is an autoimmune reaction to Nuvolumab which I took for two years because of a stage 4 melanoma outbreak. (Now tumor free!) I went on Dupixent immediately and it resolved the blisters on my scalp very quickly. (My bald scalp was the site of my melanoma tumor.) The itching never disappeared. I am now experiencing renewed issues with dry skin, (of course I moisturize daily) small red spots that sometimes bleed, roughness, scaling and peeling. I get some relief applying Gold Bond Anti-itch body lotion (over the counter). I wonder if my Dupixent has run its course. ChatGPT tells me a next line for refactory or post Dupixent treatment may be Doxycycline 100 mg and Nicotinamide 500mg. Has anyone had a post-Dupixent recurrence? anyone have experience with these drugs? Has anyone had a post-Dupixent recurrence?
@ricknorth
I’m only into the first six plus weeks of the Dupixent treatments and I’m not quite sure if it has been effective or in remission as the itching and discomfort has stopped. 100mg of Doxycycline has been part of the treatment the last two years. First twice a day and now once a day.
@ricknorth
I’m only into the first six plus weeks of the Dupixent treatments and I’m not quite sure if it has been effective or in remission as the itching and discomfort has stopped. 100mg of Doxycycline has been part of the treatment the last two years. First twice a day and now once a day.
@camtastic
Thanks for the information about your use of Doxycycline. I am delighted to hear your itching and discomfort has stopped. I see my dermatologist in a couple of weeks and I will discuss with him adding Doxycycline to my regime. I presume you have no side effects from it.
@camtastic
Thanks for the information about your use of Doxycycline. I am delighted to hear your itching and discomfort has stopped. I see my dermatologist in a couple of weeks and I will discuss with him adding Doxycycline to my regime. I presume you have no side effects from it.
@ricknorth
Re the doxycycline there have been no side effects that I have noticed and it does seem the Dupixent is proving successful as well in the initial stages other than what appears to be a slight weight gain. I started the Dupixent December 1, 2025 with the understanding it would take 2-3 months to start the effectiveness and I believe it has already been effective…best of luck.
I have Mucous Membrane Pemphigoid. It comes & goes & not many doctors have ever dealt with it.
Odd, but there isn’t even much on this Mayo Connect dire.
My only satisfaction was by going to the Cleveland Clinic. I’m seeing a few specialist here in Rochester, NY, but they do not communicate with eachother unless I force the issue.
I can’t find a Rheumatologist that will see me either.
Back to Dr. Jueng at the Cleveland Clinic, I guess.
@griffin1120 Just came upon your post and recently diagnosed with Bullous Pemphigoid but have it in my mouth as well. I was wondering if you're still seeing the doctor at Cleveland Clinic? I'd like to try to get into see him as well if you recommend? Hope that your condition is being managed well.
Good to hear about dupixent successes . I’ve been on prednisone for 7 months, going from 80 to 10 mg.also methotrexate and dapsone .I’ve been in remission for about 2 months. Can’t wait to eliminate the drugs
Good to hear about dupixent successes . I’ve been on prednisone for 7 months, going from 80 to 10 mg.also methotrexate and dapsone .I’ve been in remission for about 2 months. Can’t wait to eliminate the drugs
@johnfkiernan
Four months into Dupixent and no more blistering or itching! Started with prednisone which controlled itching until Dupixent kicked in. Very happy with results. Hope other newly diagnosed have similar results.
I have PV and being treated at Mayo in Phoenix. I have had two treatments with RITUXIMAB January 2026 & Prednisone. This was diagnosed as PV late Dec.2025 after first noticing rash October 26 after surgery October 23, 2025. I had been treated with CIMZIA for 2 1/2 years. I started 20 mg prednisone and when the dose is reduced, I experience flare up. I am looking for any information about this that I can find.
Thank you
I have PV and being treated at Mayo in Phoenix. I have had two treatments with RITUXIMAB January 2026 & Prednisone. This was diagnosed as PV late Dec.2025 after first noticing rash October 26 after surgery October 23, 2025. I had been treated with CIMZIA for 2 1/2 years. I started 20 mg prednisone and when the dose is reduced, I experience flare up. I am looking for any information about this that I can find.
Thank you
@linda08 I have either PV or MMP. 3 different dermatologists can't agree on which. Symptoms are essentially the same with different histologies. I have been on Dapsone for 2+ years and can't get any progress for Rituximab infusion. Dermatologists seem more interested in Botox/expensive cosmetics than the more involved tx. I have had only a few skin bullae since beginning the Dapsone. Intraoral lesions and ulcers are the worst. My best treatment for those have been DMSO oral rinses and I use DMSO, castor oil and clobetasol on the the skin areas that want to flare up and it shuts them down pretty quickly. I want to ask MD about subcutaneous IG at next appointment. I can do that myself without the infusion hassle.
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@ricknorth
I have been on Dupixent for a month. My itching better. My blisters are not as bad. If they start they go away fast. My pemphigus vulgaris is horrible
My mouth hurts all the time. When the barometric pressure changes extreme body pain. They say nothing yet for the pemphigus. Anyone with this?
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1 ReactionSo sorry about your pemphigus vulgaris. I cannot imagine living with the pain you describe. I have not noticed any changes in my pemphigoid with barametric pressure. I live at 7000 feet and go up to 12,000 in the mountains so pressure changes are a regularity in my life. I hope you blisters disappear with a little more experience with Dupixent.
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1 Reaction@ricknorth
I’m only into the first six plus weeks of the Dupixent treatments and I’m not quite sure if it has been effective or in remission as the itching and discomfort has stopped. 100mg of Doxycycline has been part of the treatment the last two years. First twice a day and now once a day.
@camtastic
Thanks for the information about your use of Doxycycline. I am delighted to hear your itching and discomfort has stopped. I see my dermatologist in a couple of weeks and I will discuss with him adding Doxycycline to my regime. I presume you have no side effects from it.
@ricknorth
Re the doxycycline there have been no side effects that I have noticed and it does seem the Dupixent is proving successful as well in the initial stages other than what appears to be a slight weight gain. I started the Dupixent December 1, 2025 with the understanding it would take 2-3 months to start the effectiveness and I believe it has already been effective…best of luck.
@griffin1120 Just came upon your post and recently diagnosed with Bullous Pemphigoid but have it in my mouth as well. I was wondering if you're still seeing the doctor at Cleveland Clinic? I'd like to try to get into see him as well if you recommend? Hope that your condition is being managed well.
Good to hear about dupixent successes . I’ve been on prednisone for 7 months, going from 80 to 10 mg.also methotrexate and dapsone .I’ve been in remission for about 2 months. Can’t wait to eliminate the drugs
@johnfkiernan
Four months into Dupixent and no more blistering or itching! Started with prednisone which controlled itching until Dupixent kicked in. Very happy with results. Hope other newly diagnosed have similar results.
I have PV and being treated at Mayo in Phoenix. I have had two treatments with RITUXIMAB January 2026 & Prednisone. This was diagnosed as PV late Dec.2025 after first noticing rash October 26 after surgery October 23, 2025. I had been treated with CIMZIA for 2 1/2 years. I started 20 mg prednisone and when the dose is reduced, I experience flare up. I am looking for any information about this that I can find.
Thank you
@linda08 I have either PV or MMP. 3 different dermatologists can't agree on which. Symptoms are essentially the same with different histologies. I have been on Dapsone for 2+ years and can't get any progress for Rituximab infusion. Dermatologists seem more interested in Botox/expensive cosmetics than the more involved tx. I have had only a few skin bullae since beginning the Dapsone. Intraoral lesions and ulcers are the worst. My best treatment for those have been DMSO oral rinses and I use DMSO, castor oil and clobetasol on the the skin areas that want to flare up and it shuts them down pretty quickly. I want to ask MD about subcutaneous IG at next appointment. I can do that myself without the infusion hassle.