Pityriasis Rubra Pilaris

Letter from a Patient

Dear Dr. Goldberg:

I went in to the dermatologist for a routine check of moles, got zapped 47 times, with one biopsy.

I was diagnosed with melanoma Feb. 2006. Dermatologist sent me on to a surgeon. In March I had radioactive dye injected for sentinel node spread, surgery, and lymph node removed. Thank God the melanoma hadn’t spread. I had a small coin sized place on my forehead. I went back to dermatologist. Zapped 21 times said thought it was sebhoraic dermatitis. Several months went by with no help or ease. Creams, ointments, prednisone. It spread on down side of face all the way to my waist. The itching was unbearable. I looked like I had been scalded. Starting out as coin sized round red spots. Also like I had dandruff of the entire body with scaling and skin falling off. In November doctor said it was contact dermatitis not sebhoraic dermatitis. More prednisone and see allergist.

Allergist said I didn’t have a place to do skin test. More prednisone and lots of other medicine. By Nov 30 I was a lot worse. I went to a hospital emergency room in Atlanta and given medicine that made me see double and sent to another dermatologist that same day. He took biopsies, said possible PRP. Special shampoo, antibiotics, benydryl, etc. Dec 10 dermatologist said possible Pityriasis Ruba Pilaris a very rare skin disease. He prescribed methotrexate (which is for cancer) a very strong medicine. The next day I was even worse having trouble breathing. Stopped taking the medicine. Then at next doctor visit he wanted me to try it again. He said I needed to find another doctor. So did my internist so I was left without a doctor at all.

I tried to get in with a professor of dermatology at a hospital and couldn’t until I had sent in my records proving it was rare enough to be seen. I did finally get an appointment with an internist at the hospital, she immediately had me admitted to the hospital. After 6 days of tests biopsies, saran wraps, ointments, pet scans etc. the diagnosis was unclear, possible erythraderma. I finally got an appointment in Jan. 2007 with a professor of dermatology at a prominent hospital in Atlanta. After more biopsies, blood work etc He said he thought it was PRP (a very rare skin disease) and they didn’t know the cause and it had no cure. He first prescribed Soritane plus doxepin for the itching and atarax and pain medicine. After 4 days my hands were so much worse with layers of skin peeling. I went back to the internist and my liver enzymes were elevated. I contacted dermatology professor MD He took me off Soritane immediately. Ointments and cortisones again. Nothing helped. In Feb. professor (MD) of dermatology said I could try enbrel injections a new drug that was for Rheumatoid Arthritis but it had shown some help with psoriasis and take a gamble it might help or it might not. The side effects were MS, TB, and lymphoma or I could just live with this PRP. At that time I was itching and this was over my entire body and unbearable that I thought willing to take the chance.

I was suppose to get it in 10 days. My next appointment was one month later. The dermatologist professor asked me about the enbrel injections well, I hadn’t got them. I was assured it would be taken care of. My next appointment was May 2007. I still hadn’t got the enbrel and it was the last of April. I gave up on any help so I called cancelled all appointments. On the day of my cancelled appointment my Pharma Insurance Co. called and said they would be sending out the Enbrel injections today. I told them not to send them just keep em I made it this far without it and now I don’t want it. That was one of the best decisions I made.

My chiropractor saw the pictures that my wife had taken of me and strongly suggested that I see Dr. Paul Goldberg. I was at the very end of my rope. I had no where else to go. No hope of getting better. I didn’t know what else to do. I came willing to do whatever it took to get better. I saw Dr. Goldberg May 2007. That was the BEST Decision I made. I had improved in one month. Now after 3 months, life is worth living again. I am continuing to improve. I wish I had known about Dr. Goldberg a long time ago. Here are some pictures of before and after. You be the judge.

Thank you Dr. Goldberg.

Sincerely,

EJ Crow