Pemphigus Vulgaris: What treatment helps you?

@raypauls1 I’m happy I could help. I felt desperate for a cure and researched everyday to find something that could help me. So, don’t give up.

@cicimee2 Happy you are taking Retuximab infusions. It was a miracle for me and almost surreal when the sores started healing. I was a little nervous it would come back but the 2nd round made sure it never returned. 21 years later it seems like a bad dream. Praying you have the same outcome. Stay positive.

@i used an oral surgeon as they seem to know more about your mouth. They also make or have a company make the mouth trays and prescribe the medication.

@barbarajesse Hi there, I am wondering if you Wouldn't mind giving me a couple details of your infusions. They have me on 1000 mg for the first 1 and 2 weeks later, the same.Then waiting a few months to see how well things go. That is very different than your course and I am wondering why. Do you happen to know? I Had a serious setback in my minimum progress with Myfortic , because I had a tooth infection come up and required an extraction. The antibiotic sent me back months and my mouth flared badly. I cannot seem to get it settled down. I know you understand how frustrating this is. I still have the hole in my cheek From the punch biopsy , the beginning of February this year. That area has only open opened and remained.Never even started to heal. I continue to be thankful for the possibility of remission and so happy that you have had such Healing. Thanks again.

@cicimee2 Good luck and hope You go into remission soon. I am praying for you. 🙏🏻

@cicimee2 Just curious, was Myfortic given to you for pemphigus? I had a kidney transplant 3 years ago and take myfortic as one of my daily immuno drugs.
My ENT initially took a small amount of mucosal tissue from inside my mouth to determine if I had pemphigus. I felt a tiny pinch and healed in a few days.
I was one of the first recipients of Rituxan in 2004 as it was given to cancer patients first as a last resort. Then it was tried on pemphigus patients and had good results. It was still being tested so I was happy my insurance company covered it. At that time, protocol was 4 infusions once a week, but I don’t
recall my dosage. I do know it was based on my weight. My second round was 6 months later and new protocol was 2 infusions over 2 weeks.
I was already in remission for 2nd round so it was to make sure it would never come Back. And it never has and I’m so grateful.

I truly wish you the same
outcome. Please keep me posted as I’m hoping the same outcome for you.

@cicimee2 Just curious, was Myfortic given to you for pemphigus? I had a kidney transplant and take myfortic as one of my daily immuno drugs.
My ENT initially took a small amount of mucosal tissue from inside my mouth to determine if I had pemphigus. I felt a tiny pinch and healed in a few days.
I was one of the first recipients of Rituxan in 2004 as it was given to cancer patients first as a last resort. Then it was tried on pemphigus patients and had good results. It was still being tested so I was happy my insurance company covered it. At that time, protocol was 4 infusions once a week, but I don’t
recall my dosage. I do know it was based on my weight. My second round was 6 months later and new protocol was 2 infusions over 2 weeks.
I was already in remission for 2nd round so it was to make sure it would never come Back. And it never has and I’m so grateful.

Think positive at all times. I kept repeating to myself I would beat this. Mental attitude is a huge part of healing, not just the drugs.

I truly wish you the same
outcome. Please keep me posted as I’m hoping same outcome for you.

Great reply s. It took 2 Dermos and 2 dentist and then an oral surgeon who explained what i had to get the right help.

My bullous pemphigoid was triggered by Trajentra and then i I got MM Pemphigoid. I was very sensitive to prednisone, imuran and dupixent. I am off medications except for the Clobetasol, cream for bisters on my skin and the gel for my mouth. After reading all of the reply s I went back to my old notes. I was surprised on all I went through. It all started 3 years ago. Finding knowledgable Doctors have been a real challenge. I had 4 different opinions of what i had in my mouth. I am finally doing OK. Good luck to everyone. The key is finding a good Doctor.