Racheal (Washington, USA) – 3 year update

It has been a while since I checked in. This is my 3 year anniversary with PRP so I am providing an update.

I am a 58 year old female living in the state of Washington, just north of Seattle (U.S.A.). I found this group on the web in late February 2003 but didn’t join until April.

During the late summer of 2002, I began to experience sharp, shooting pain in my legs, arms, and back – almost a “burning” pain. That would, sometimes leave me exhausted. I also had a pronounced sensitivity to heat, cold and sunlight. It wasn’t until November that I realized the patches of hair missing from the back of my head and the various size spots covering me from head to toe had changed into something that needed immediate medical attention.

Suffice it to say, I was hysterical when I got a good look at myself. My feet – swollen and cracking. The tips of my fingers – numb, cuticles cracked and tearing. It was the same with my elbows. At the emergency room, they had no idea what was causing such an “outbreak” – as they called it. And the dermatologist who called in that night had never seen anything like it and advised me to seek help at a nearby teaching hospital.

He gave me something for the, by then, horrific itching and burning and he then sent me home.

Already in the process of moving, it became almost impossible to complete the move because I was barely able to use my hands or wear shoes. My best friend and her husband came to the rescue and got me moved.

Once moved, I went to the hospital because I was concerned that my skin seemed to be falling off of me – in my clothing, my bedding and anywhere I seemed to sit. Again, they gave me.something for the pain and itching and a referral to three doctors at a nearby family medical practice. These good doctors referred me to a dermatologist – Dr. V. (Diseases of the Skin specialist) – who questioned and examined me thoroughly and told me, he only saw it once since he began practicing medicine. He thought I might have PRP. He took a biopsy and sent it off to a medical Lab – and the conclusion was the small plugs centered in the reddish-orange spots made it likely that this was PRP.

Dr. V. told me there was a course of treatment, but that it involved serious medications and side effects. One of them cost $431 dollars for a 30 day supply of pills. After much soul searching, I decided NOT to take the pills. Instead, I made an oatmeal, cottage cheese. Vitamin E and baby oil mix to coat myself with – especially my feet and hands. I would wear socks and gloves to bed or wrap them in saran wrap. When not using my “mixture”, I’d use pure cocoa butter or Bag Balm, or BOTH.

Of course for many months there was little change. It seemed that I’d also developed some heart problems bouts of. arrhythmia. Dr. V. felt the PRP was the culprit and referred me to a cardiologist. He was able to stabilize me and I continue to see him.

By this time I’d fallen into deep depression – I was unwilling to go outside, and I was always conscious of people looking at me when I did. My primary physicians referred me to doctor who specializes in psychiatry. She gave me something to calm me [an anti-depressant] and also to help me sleep for about six months and, Dr. V. continued to monitor me monthly – then after a year, every 2 months – and now every 4 months. In September of 2003, Social Security finally approved my disability.

I’m sharing my course of treatment, because I seem to have come to the point of remission . . . almost 90% clear and my natural coloring is back (hands, arms, elbows, legs, inner and outer thighs, tummy, face, under my chin, throat and neck, areas around my eyes and ears). This clearing was about the same time as many other members of the support group have reported. There are still visible spots on my upper chest area, shoulders and back . . . but no way what they were in the first year or even last year.

This has been a life-altering experience because this is a very insidious disease – and I do not think it will go away COMPLETELY. I do think diet, stress management and awareness of its presence will be with me for the rest of my life.

I have always been allergic to antibiotics and penicillin. I think somewhere along the line.my system was made vulnerable for PRP and it took the right conditions for it to rear its ugly head. This group,gave me the support and information to do battle and I have come to believe it help saved my life . . . I could not have done this alone.

To all of you available members, your support and caring were invaluable to me and I thank you with all of my heart. You held my hand and stayed close.

I now work 3 days a week, try to eat healthy and exercise, do a lot of walking and am back to swimming – it is a love of mine.

Though difficult, I hope this has given another perspective of PRP and the full course of events.