Dermatomyositis & AP… I won!Liesl (Lee) Dutro
Dermatomyositis & AP
I like the ‘ending’ best… so I’ll tell you how my story ends first! I am in remission, enjoying life… caring for my 3 kids, my husband, our home and rental homes, work PT, volunteer at the schools, teach religious ed. Does that sound like someone who is sick? Oh, did I mention that I learned to snowboard last year?
Like most of you who will read this… the onset of my illness - Dermatomyositis, was like a bad dream… a reality for others that I never even knew existed came crashing into my life.
I was 28, it was July 1996. My first born - Kyle was almost 4 yrs old and his baby brother was a month old (Ian)... I had a rash that appeared and disappeared on my face and chest. It seemed so odd. When I went to my 6 week OB/GYN follow up appt I asked about it… my doc said to ask my GP.
The nurse practitioner at my GP office looked through books and determined that I probably had polymorphic light erruption… a sun sensitivity… this made no sense to me at all… I am 1/2 Filipino… sun is not a problem! She ran an ANA test… it ended up coming back positive and then they suspected Lupus… by this time my knuckles were pinkish purple with nodules (later to find out they had a name - Gotron’s Papules and a tell tale sign of DM) and I was having weakness in my arms and legs… I was then examined by an idiot doctor (had never seen him before) at the same GP office… his diagnosis was that I had eczema on my hands and I was picking up my 10 pound newborn too much - causing the pain and weakness. I think I pretty much told him he was an idiot… my son Kyle had eczema and I knew that is not what I had, I also knew my abilities and the pain I was feeling was not due to holding my baby.
This doc gave me a referral to see a rheumatologist… 6 weeks until the rheumy could see me and the dumb doc said I was okay to wait the 6 weeks… I found my own rheumy who saw me that same week… he suspected DM (from my knuckles) - ran bloodwork, started me on prednisone (20 mg) and scheduled a muscle biopsy. My cpk was over 900 where around 100 and less is normal. Muscle biopsy showed DM. This was Sept. 1996.
The prednisone seemed to work… I felt better - muscle wise and my skin was a little better - but it was awful the side effects - mood swings, hump on my back, weight gain, thinning hair on my head, growing hair on my face, moon face… and it was a rollercoaster ride… when I’d flare up went the prednisone, then I would decrease until the next flare… at times my skin was like a second degree burn… my muscles so weak I could barely stand or walk. Life was so difficult. I was on prednisone a total of 3 years.
In November 1998, I had read The New Arthritis Breakthrough and did research on the internet about AP… I printed out the protocol and brought my book to my rheumy… I was in the midst of one of my worst flares… he wanted me to get off the prednisone and use Methotrexate. He said, if it were him that is what he would do… he didn’t believe in AP - said Dr. Brown was a quack and AP had not been double blind placebo tested… I told him, if and when this happens to you - you take Methotrexate. I want to try AP, and I think it will work!
He gave me an rx for 200mg minocycline to be taken daily… for 6 months… so I had more than enough to take it MWF and see what would happen… My cpk stabilized and skin began to improve… I slowly did my usual weaning down of my prednisone. At the end I was cutting my 1mg tablets in half and taking a half mg daily… this is when I went back to my rheumy… all symptoms gone, feeling great, looking great. He said, hmmm you have to wonder if that minocycline didn’t help… DUH! At this appointment he also told me he was going to quit practicing and make furniture!!! Okay!
I achieved remission - no meds and no DM, I then conceived our 3 child and she was born in April 2001 (Kaitlyn)... my DM flared a month later… this time I went to my new GP - he had never heard of DM or AP… he read about DM out loud to me from his medical book… he then asked me what I wanted to do… I explained AP to him and said I wanted to continue nursing my baby… he was in favor of that! He prescribed 250mg 2x daily erythromycin… my cpk was 2000… in 2 weeks it dropped to 1100… and kept on dropping. In 8 weeks it was normal… and has been ever since.
I am again in remission - no meds and no DM… I am enjoying life to the fullest… and by that I mean my life is VERY VERY FULL!! I have many demands being a working mother of 3 great kids - almost 12, 8 and 3 yrs old, wife, teacher helper, room parent, religious ed teacher, etc. but that is okay… because being well and being able to do it all is the greatest blessing. Through all the pain and dark times I knew I would be well again, and once I found AP - I just knew it would work. Sometimes, even when others and doctors don’t believe… you just need to have faith.
Colorado Springs, CO
DM dx 1996