In 1999 I was having serous trouble with fatigue, muscle soreness, stiffness and weakness, I could hardly walk around the block. At the urging of my physical therapist I went to a a doctor and after many tests, including a muscle biopsy, I was diagnosed with Polymyositis and was promptly put on a huge cocktail of medications that included high doses of Prednisone, as well as Methatrexate (a cancer drug, a form of chemotherapy to suppress my immune system).PM is a rare disease that effects approximately 1 in 100,000 (aren’t I lucky?) which means that no money is spent researching for cures or specific medications. Instead patients are put on a multitude of meds for other ailments. I’ve been on meds for Rheumatoid Arthritis, anti-rejection medications for transplant patients and with every new med came a new set of side effects. Charming.
As soon as I was put on the Prednisone I immediately responded and started feeling better, stronger, more energetic but still not great. Far too many side effects.Weight gain, bloating, facial swelling, belly fat, water retention and then there’s the danger of osteoporosis, and the softening of dental enamel. The cure is almost worse than the disease, but none the less Prednisone worked incredibly well at controlling my illness, well enough for me to go back to work and start teaching and training again.
Over the years I’ve tried to get off the Prednisone but every time my doc reduced the dose, my inflammation markers from my blood tests showed that the disease was really active. With PM the immune system attacks the muscles and causes permanent damage, so it’s critical to control the inflammation.
My doc kept increasing my Methatrexate dose and that seemed to help with the inflammatory response but made me really tired, nauseous and lethargic. THEN I started getting Melanoma’s cut off me, I know I baked myself in the sun growing up in Australia, so that’s the true cause. So far I’ve had 6 cut off! I now have to go to the dermatologist every 3 months and it’s rare that she doesn’t cut something malignant off some part of my body, my back is a mass of scars. My Derm feels there is a connection between the malignant cancers and the Methatrexate. So….last month after yet another had been cut off and my dentist said my teeth enamel was dangerously soft I knew I had to do something. My cure is killing me at worst and at best by the time I’m 55 I’ll have full dentures! NOT GOOD!
So I decided to take an alternate route. I’ve stopped the Methatrexate and Prograf (anti-rejection med) to try a more natural approach. I’ve been going to an acupuncturist who has been giving me Chinese herbs and aromatherapy and I’ve started to taper the Prednisone. Right now I”m on 12mg, the lowest I’ve been in over 7 years. I will be tapering 1mg per month. My recent blood test was very positive but time will tell. Good news is, I feel really good, so much more energy, less pain and fatigue. More to follow….
