Pemphigus Vulgaris
My journey with this disease started about five years ago. I am one of the very lucky ones with the disease, as there are those whom suffer much more than I.
My first clue that something was wrong was the formation of blisters in my mouth. These could be large blood blisters, or smaller water filled lesions. I also experienced nose bleeds, soreness in my throat, difficulty eating, and loss of voice. I first went to my doctor, was then sent to an ENT, then to a dermatologist, then back to my doctor. It was finally my dentist who arranged for a biopsy, with the result coming back as pemphigus. It took me about a year for this all to unfold, and I was starting to think it was all in my head. I found out later that this is very common.
I was very lucky as there is a doctor who specializes in this disease in my city. I know there are lots of others who have to travel great distances to see their specialists.
My father also suffers from an auto-immune disease. His disease is Good Pastures syndrome, which has destroyed all kidney function. PV itself is not hereditary, but the tendency to develop an autoimmune disease is. Also, one you have one autoimmune disease, it is quite common for you to develop a second one.
I was first put on the steroid Prednisone and started on Cellcept. Later I tried IVIG on two separate occasions. The first I developed hemolytic anemia, so treatment was halted. The second time I developed aseptic meningitis - which basically meant severe headaches. I struggled for some time to come off the steroids, becoming ill when the dose was reduced. I am now totally off of drugs. I am still symptomatic, but I choose to live with the symptoms, rather than go back on the drugs. Again, I am one of the lucky ones....some people's symptoms are so severe that coming off the drugs is not an option.
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