I am female, currently almost 32 years of age. My first symptoms appeared in July of 1996 and I was diagnosed with dermatomyositis in September 1996. In March of 2000 I am in remission.
I was diagnosed with dermatomyositis after the birth of my second child. I experienced the muscle aches and pains, fatigue, and skin rashes that were similar to second degree burns. I rode the prednisone roller coaster - CPKs high, prednisone high, then as my CPKs would drop to normal I would decrease the prednisone, only to go back up with each flare.
I tried herbal and naturopathic remedies and my doctor was trying to press me into methotrexate in 1998. I then found information on Dr. Brown and his protocol and I read the book "The New Arthritis Breakthrough". My rheumatologist would not look at the materials I brought and only said that antibiotic therapy was not a proven treatment for dermatomyositis.
I don't know of anything else that shows as much promise or makes sense! Prednisone and methotrexate only suppress the immune system - not cure what is wrong. I told my doctor, "either give me a prescription or I'll go to someone else who will" - I wanted to try it. He wrote me a prescription - and luckily he wrote it to be taken twice daily, so I ended up with a bigger supply! I took it according to Dr. Brown's protocol - Monday Wednesday and Friday, 100mg in the morning and 100mg in the evening. I began taking minocycline in November of 1998 - I am guessing that I was in the neighborhood of 12.5 - 15mg of prednisone daily at that time.
I was having one of my worse flares with a second degree-like burn/rash on my chest. My face was almost a reddish purple, I itched like crazy and had muscle weakness. When my CPK was in the normal range (in Dec 98 or Jan 99) I began my slow decrease of the prednisone. I noticed after about five months that my skin had really cleared up. After one year of being on the minocycline my CPK was consistently normal and I had decreased to 2mg of prednisone. In January 2000 I was only taking the minocycline once every Mon Wed and Fri and then in February I quit taking minocycline because I got a sinus infection and I didn't want to take Augmentin and minocycline at the same time.
By March 2000 (16 months after starting minocycline) I was only using one-half mg of prednisone and my CPK was 55. My doctor said to quit the prednisone and I am now free of prednisone and any affects of my dermatomyositis. My doctor said "You can't help but wonder if that minocycline didn't help" (duh!) - and as an update, he has quit practicing and is now building furniture (he's quite good at it).
Update January 2002.
I was off all meds, including minocycline from February 2000 - May 2001. I happily found out in August 2000 that I was pregnant with my 3rd child... our baby girl! Kaitlyn was born April 17, 2001 - not quite a month later, my muscles ached and burned... my CPK was 1755, the highest ever (under 150 is normal). I went to my General Practitioner who knew nothing about dermatomyositis or Antibiotic Therapy... he asked me what I'd used in the past, he read from a medical book about prednisone, methotrexate, etc. At this time Kaitlyn was just over a month old, and I did not want to quit breastfeeding because of medications. So, I told him about the antibiotic protocol and minocycline... unfortunately, I can't take minocycline and breastfeed... but I told him I could take other forms of tetracycline... doxycycline, and some others I had written down. We found that erythromycin was safe for me and baby so I gave it a try... my CPK came down steadily, to 1000, then 700, then 400... by the end of the summer I was back in the normal range with only taking 250mg of erythromycin twice daily.
I am doing phenomenally - still taking the erythromycin, thinking about weaning a little - maybe to 1 time a day... we'll see. In the meantime, I am caring for my 3 kids - 9, 5, and 8 months, my husband, the house, the dog, working part time from home... life is SO good. Thanks Dr. McPherson-Brown for your wonderful life-saving work... I know you are smiling down on us!
Lee, Colorado, USA.
You can reach me at firstname.lastname@example.org