Ron's Story
Ron is a member of the online discussion group at IPPF. In one of his earlier emails to the group, he describes the experience of trying to control lesions on his scalp:
"...at night, wrapped my head with a plastic like saran wrap, put on a beanie type cap to hold it all in. Then the next morning I showered the loose scabs off until my head was raw (not pleasant). Then I layed on a layer of Clobetasol Ointment. And within 2 weeks I was growing new skin and healing. Note: I was also on 3g of cellcept and 40mg pred at the time. It was my doctors belief it was the scabs keeping my head from healing and alowing the meds to do their job.... I am now lesion free for the last 6 months, down to 5/4 mg pred, still at 3g\ of cellcept though." (Sat, 3 Sep 2005)
There could be another reason why Ron was lesion free at this point. In a letter dated July 9, 2005, roughly two months before, he had written: "I have learned to destress and take my stress tab with zinc daily...I hope I'm on my way. Down to 5mg pred from 40mg, 3000mg cellcept. I have one little 1/4 inch spot on my scalp and no more mouth involvment at all....I hope I can keep going and finally be drug free...and hope the same for everyone else."
The stresstabs that Ron refers to contain zinc, which is known to improve the health of the adrenal glands, which in turn oversee the functioning of the immune system. He continued to take the stresstabs, along with niacinamide, and on May 7, 2006, wrote, "I can't say with 100% certainty that's what did it, but I have been lesion free (not remission) for the last years, after 2 years of cellcept and prednisone alone. I am only on 4mg pred EOD down from 80mg per day and 2000mg of cellcept Down from 3000mg."
Ron continued on the stresstabs and niacinamide routine, in addition to a calcium supplement, and on March 19, 2008, was able to sum up his experience this way:
"I have had PV over 4 years now....I was on Prednisone and Cellcept for 2 years and the pred was killing me, and I had no signs of my skin ever healing. After that time...I started with a good stresstab, Calcium, Niacinamide and Omega3 fish oil (to combat high cholesterol from the pred). At that time, I went to see Dr Victoria Werth...and she agreed with me to stay on the vitamins. The only thing she changed was she gave me clobetasol to put on my blisters. Soon after, I started seeing results...my skin actually was healing and ( I ) started dropping my prednisone and then the cellcept. I am now medication free for over a year but I still take the vitamins everyday. Of course, I can't scientifically prove that the vitamins are what did the trick, but firmly believe that they did.