After I bought my first computer I started searching for information about pemphigus. I came across the IPPF’s online discussion group. I cringed as I read each email and was reminded of how uncomfortable and unnerving this disease can be. I thought about how I managed to go into remission and remain blister-free for so many years, and what it was I might say to the group that could provide some hope of a similar outcome.
I kept journals during the time I had pemphigus, and wrote in them nearly every day. I recorded my medications and my physical state, thoughts and feelings. It was comforting to spell out my changing moods, from hope to despair, and vice versa.
My journals became a confidant of sorts, where I could bitterly complain about my condition, or exalt over the slightest sign of improvement. They also became a valuable source of insight when I looked back through them in my second year of pemphigus and found a pattern of ups and downs that seemed to correspond to those times when I had experimented with various vitamin and mineral supplements.
I could see after adding supplements for a few weeks my entries were more upbeat and optimistic; and when I quit taking them, I became discouraged and frustrated. I tried the vitamins several times to see if I continued to improve. Within 6 months I saw my blisters healing, I tapered off of prednisone, and entered remission. I can’t say for sure taking supplements led to my remission, but I think it’s safe to assume improving my overall health increased my chances.
One key element that could have helped is the mineral zinc. Zinc stimulates the adrenal glands to produce natural corticosteroids. Prednisone is a synthetic corticosteroid. It’s possible increasing zinc levels lowered my need for prednisone while restoring the natural secretion of corticosteroids helping the immune system distinguish between healthy tissues and foreign “invaders.” Zinc also plays a role in the Thymus gland, which produces regulatory T-cells (or T-regs), responsible for secreting immunosuppressants.
You should know I never considered supplements a substitute for prednisone or any other medication prescribed by my doctors. I never deviated from my doctor’s orders. I learned certain key vitamins and minerals are depleted by prednisone and other drugs, including Folic Acid, Magnesium, B-6, B-12, Calcium, and Vitamin D.
I chose a multi-vitamin supplement containing 23.5 mg. of zinc and the recommended levels of other nutrients to counter that effect. After several weeks I reached a relatively normal balance between the two. At least I was able to get through the disease and function without experiencing severe side effects drugs can produce.
Adding a supplement to your diet is something you should to discuss with your doctor. Finding the right multivitamin for you is easy. What was once unique to the health food market is now a common formula found in most pharmacies under a variety of brand names.
The farther away I get from my experience with pemphigus, the less I think about it. The years have gone by quickly. Now that I am retired, I find myself working quietly at home doing things I love, and feeling very grateful for having come through it without any long-term effects.
I no longer take the supplements I feel helped me to recover, or any medications at all. I believe I am living my life the way it was meant to be, but I still keep a journal of sorts. You never know when you might want to look back and remember the good days, as well as the bad.