Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi there all!
I have a long story but the bottom line is I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) last year, after many, many years of suffering and searching. I finally had an answer! Yah ... boooo.
Anyway, I was immediately started on prednisone and Placquenil. I immediately gained weight. I could look at a piece of lettuce and put on 5 pounds. Meanwhile, only my chest/back rashes got 'better'.
Fast forward to now, and I feel I'm actually getting somewhat worse. My hands are hurting, my elbows are bright red with sores breaking out on one of them, I am so damn exhausted all the time, I can't walk 15 feet without my outer thighs just burning, my right eyelid is slightly swollen (I think I have the rash on both of them, but my doctor says no), and I'm foggy and can't get out of my own way.
My primary care doctor wants to send me to Johns Hopkins and I said 'okay'. When I saw her yesterday, she made TWO copies of my records ... one for JH and one for me.
I got home and read my rheumatologists notes and I about puked.
He said even though I tested positive for dermatomyositis ... he thinks I'm basically just 'out of shape' (God, I have put on 30 pounds since the prednisone, but I was 130 lbs when I started, so I'm not THAT fat). He thinks since I didn't respond to prednisone ... that I don't have myositis and the antibody finding was not clinically significant.
I bet Johns Hopkins won't see me know.
Any thoughts??
I have a long story but the bottom line is I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) last year, after many, many years of suffering and searching. I finally had an answer! Yah ... boooo.
Anyway, I was immediately started on prednisone and Placquenil. I immediately gained weight. I could look at a piece of lettuce and put on 5 pounds. Meanwhile, only my chest/back rashes got 'better'.
Fast forward to now, and I feel I'm actually getting somewhat worse. My hands are hurting, my elbows are bright red with sores breaking out on one of them, I am so damn exhausted all the time, I can't walk 15 feet without my outer thighs just burning, my right eyelid is slightly swollen (I think I have the rash on both of them, but my doctor says no), and I'm foggy and can't get out of my own way.
My primary care doctor wants to send me to Johns Hopkins and I said 'okay'. When I saw her yesterday, she made TWO copies of my records ... one for JH and one for me.
I got home and read my rheumatologists notes and I about puked.
He said even though I tested positive for dermatomyositis ... he thinks I'm basically just 'out of shape' (God, I have put on 30 pounds since the prednisone, but I was 130 lbs when I started, so I'm not THAT fat). He thinks since I didn't respond to prednisone ... that I don't have myositis and the antibody finding was not clinically significant.
I bet Johns Hopkins won't see me know.
Any thoughts??
You are sick, you describe classic symptoms and have an antibody to prove it, no mind if it shows outside right now or not.
Yes August is a bit our but JH will be amazing and you will get a plan you can work with more locally at home!!!
I go to Stanford for my DM care and my local rhuemy and GP help me manage the other specialists and tests and daily care.
Best to you. There are good treatments out there, and i would not reduce your steroids now, wait till you see JH.
Shawna
I have DM with overlapping Scleroderma and Chronic Kidney Disease. My fingers & hands will puff up on occasion. My legs, arms and ankles also have puffs. I will get very tired too. I will have weight gain on & off too.
Blood tests are not the only indicators with DM/PM. How you feel does make a difference. Any scores out of range like high protein has a meaning too. I will ask my doctor about the meaning of an out of range score.
I know that a second opinion never hurts. I do not just see a rheumy. My rheumy is excellent and my main treatment source. I do see the other doctors for the aches/pains and blood scores that indicate other organ involvement.
I hope that you will find a good doctor that will be enthusiastic and a good communicator too.
I only have experience with DM, but my MD told me that up to 20% of DM patients experience an allergic reaction to Plaquinil, and that the majority of DM patients do not respond favorably enough to Prednisone to make the side effects worth it. I experienced a bad Plaquinil allergic reaction, which made my condition much, much worse than when I was first diagnosed, so if you feel you are getting worse, please inform your MD asap. Though everyone's situation is different, I think I waited too long and I'm still suffering the consequences of the Plaquinil.