Hi john, sorry for the late response I haven't checked this in a while. First off let me say it's going to be alright. I was first diagnosed with pemphigus 4 years ago and yes I have been in remission for a long time with the right treatment. Some of the drugs had bad side effects but be sure to have a good dermatologist and you will be okay. You do not have to suffer from this always. It can be handled with the right medication. They usually start you off with steroids and try to put you on another medication that is better for you. Right now I'm on CellCept instead it is still being lowered slowly but I am almost off of all medication.

I hope it helps and I hope that you found treatment, if you have any questions let me know and I'll be in touch.

Hi John, very much new to this site. Sorry to hear you going through this. Hope since your initial post, that the doctors have managed to control the condition? I was diagnosed in 2008 after 7 months of misdiagnosis. It was a dermatologist who finally took a biopsy and diagnosed it. He treated me up to 80 mg/day of prednisone and was afraid it was too high a dose. The disease worsened to the point that he referred me to a specialist dermatologist at Sunnybrook hospital in Toronto. He immediately increased my dosage to 160mg/day just to get the disease under control. Again...it was too late and the disease progressed. Like yourself...I was taken into the hospital into the burn unit as 80% of my body was then open sores. I was there for 5 weeks. Thank God they were there. Anyway.... after being all all types of meds for this condition.....what saved my life was a drug called Rituxan. An IV drug that is used for Rhumatoid Arthritis but has been found to be successful with Pemphigus Vulgaris. I've since has 3 or 4 treatments of Rituxan along with a couple of years of bi-monthly IVIG infusions. I'm now totally in remission and have not had any treatment in over a year and no drugs. Fingers crossed as my doctor says there is no "cure" only remission. Hope this helps. Let me know if you want the contact info for my doctor in Toronto. Perhaps your dermatologist could speak with him about treatment regimes. Be strong....it get's better and you will be much stronger for this. Take care. Clark

Rituxan did it for me. I had my last treatment a year ago that was my second time. The first time it lasted a little over a year. I am not on any medication and doing just find. I had breast cancer at the end of last year. After the surgery, I was treated with radiation. We were all on watch to see what would happen to my pemphigus at the end of the 6.5 weeks of radiation treatment. I had no problems. The rituxan did it's job and kept me in remission.

Hi im a 53 year old male. I have had pemphigus foliaceus for 4 and a half years. I take prednisone and cellcept. Id like to speak to other people who have this, how yours is, and what medication you take. Mine has flared up badly on my scalp, chest and back, also getting sores on my legs. Look forward to hearing from you.

Hi everyone - new member, was diagnosed with Pemphigus Vulgarus late 2012... 61-yr old male. Started on forehead, spread to chest and back. Dr. started me on prednisone, eventually 60mg a day, 30am, 30pm. That seemed to start bringing it down, even though it was somewhat spreading to my scalp. When it was gone from chest, back, and forehead (just faint red areas), Dr reduced prednisone to 40mg a day, and it started coming back on my forehead! Now I'm back up to 60, and so far it's not getting worse on forehead, but not getting much better either... and slowly spreading on scalp... I know the prednisone is helping, but I really struggle with the side effects - some days I feel like I'm 120yrs old!

Hi,

I am with you all in heart and soul. In August, I was in Mexico on vacation, living with a family and taking Spanish lessons, had a sore throat, taking antibiotics, twice, then got white pimples, saw an doctor who said I got chicken pox, which I never had as a child. I didn't know at the time what was happening: quarter sized blisters opening, dripping on my body. I was not eating/drinking regularly. I waited 10 days until I got back home since there's nothing you can do for chicken pox. I got home, saw my doctor who sent me to the emergency room. I spent 3.5 days in isolation but they kept saying it's not chicken pox. They sent me to an affiliate hospital with a dermatology unit and I saw infectious disease doctors, ENT, etc. A dermatologist took a skin biopsy, less than 2 weeks ago, and I found out it was phemigis vulgaris. What a shocker! I am not working now but staying at home, alone. The hospital prescribed a regimen of prednisone: 5 mg. each, first five days taking 12 pills = 60 mg. a day, then 5 days at 11 = 55 mg., today I started 10 pills day for five days, until it tapers down. You get the idea. Some sores have healed but there are a few new ones and in uncomfortable places too.My mucous membranes are not good: blood crusted nostrils, now developing a left puffy left eyelid. I have lesions in my mouth and that worries me too. Not easy to eat but soft healthy food is the answer. Do a search on the International Phemphigis Foundation. Write to a coach and they will send you info and answer questions. It's helped me. I have been home from the hospital less than 2 weeks and my life, like yours, has changed completely. I need to find a good dermatologist here. Am in the NYC area. I am with you, my friends.

I was in the 2nd hospital for 5 days, 7.5 days total for both hospitals. I have never been sick in a hospital for my entire list. I am in my late 50's, was energetic and healthy as a horse. Now at home it is the same, taking care of myself round the clock but I am doing it alone. Oh, my cat here is now my comfort cat, sensing that something is not right, not the same. Thank goodness my friends and some friends of friends are reaching out to me, phone calls, emails. I am letting people help me. We all need somebody and this is the time to reach out, so I am here, reaching out to you. I will continue to read your posts.

Hey John. I am 42 and kinda in the same shoes.I certainly wish you and all the rest posting here. The very best. I would Love to see some kind of remission here. This has worn me thin.I is difficult to work when customers do not want you in their homes because you are covered with blisters and bleeding through your shirt. It makes it difficult to make a living this way.

Hi John,

I know that it is scary at first but things do get better. I am 36 and I found out that I had it after giving birth to my Son. I found a Dr. in Atlanta Georgia that had treated it before. He put me on 40-60 mg. of prednisone. This drug helped my blisters go away, but I lost some of my hair and had very bad anxiety. He started taking me off it and putting me on a different med that didn't have as many side affects. I too had blisters in my mouth, head and especially my hands. After 2 years I only have small outbreaks from time to time. I use clabatesol to make them go away.
I wish you the best and hope that this helps you. This is an excellent site and please reach out to me if you need anything! I know that it is scary at first.

Kelly