Pemphigus

Hi Shahs,

I have recently been diagnosed with pemphigus foliaceus after 3 months of constant itching. There is no known cure but there is treatment involving immuno-suppressant drugs which have serious side effectss as they lower or suppress system immunity. In my case, the dermatologist was 100% sure it was foliaceus. The lesions are predominantly on my legs and back with 1 or 2 blisters breaking every day. I have searched around for info and have come to the conclusion that if left untreated my condition will certainly be worse.

Regarding tests, a skin biopsy and several specific tests on a blood sample have to be carried out to the establish the type of antibody that is attacking the (glue/adherance) antigen on the skin cells. I suppose that by now these tests have already been performed in your case. Let me know how your condition develops. If you opt for immuno-suppressants and related vaccinations and you're planning to travel to India you have to consider the environment where you will be staying to avoid catching infections due to lower immunity.

many thanks Reef for your detailed and helpful reply. My condition has been diagonsed as Bullous Phemphgoid in July 2011 and currently I am on 5mg steroid and 50 immuno suppreasant plus calcium and vitamin D supplement. The blood test happens around once every 3 months. India was fine as I mostly stayed in a reasonably clean envionment. I am really hoping to get the steroid down by atleast 1 mg now. I was suggested to reduce steroid to 2.5 mg almost 3 months ago unfortunately that did not help so went back to 5mg streroid.

I had blisters on my head and used some kind of gel - this has helped. Yes the biospy helped to confirm the condition. I am not aware of any vaccination.for teh condition apart from the standard ones for travelling to India.

I do hope to get rid of this condition soon now. Once again many thanks for your detailed reply. Likewise goodluck with your condition and hope you get rid of this condition soon.

It's good that your condition is responding to the steroid/immunity-suppressants. 5 mg of steroids is low and should pose no problem in terms of side effects. I'm interested to know how much you started with in july 2011.

Hi shas,

I have just found some interesting information regarding the treatment of pemphigoid. Several research papers mention that dapsone with or without the corticosteroid/immunity suppressants has been very effective in a significant number of cases. Your condition may have improved now but I thought this old medicine may be beneficial for you. I'm thinking of asking the consultant to prescribe it to me for pemphigus foliaceus.

dermatology.cdlib.org/DOJvol8num1/reviews/dapsone/wolf.html

hi reef i cannot remember the exact dose but believe it was 40mg steriods and 150 mg immuno suppressants.

I have sent you some interesting info on the treatment of pemphigoid but the message is still awaiting approval (see above). I hope you find it useful.

Hi Shahs,

My Mom is also suspected of getting Bullous pemphigoid disease. Her test are under going and shall be having confirmation by next week. Are you aware of any good doctors/hospitals in India that are experts in treating this disease.

Hi everyone I have bullous pemphigoid and cicatricial pemphigoid and am currently tapering the prednisolone. I am on 5mg daily and Methotrexate 10mg weekly but I am expecting that to be increased when I see the Consultant this week.

I also see Ophthalmologists who mentioned dapsone but my Dermatologist prefers to use methotrexate. I have been on the pred for almost 2 years