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??
I bet Johns Hopkins won't see me NOW.
Not all Rheumy really understand DM, and only a really good Dermatologist with good background with medical issues will see it. It is not easy to get diagnosed, but that does not mean you do not have it!!! Getting a good plan together before you hit rock bottom is essential. Been there done that!!
I am a nurse, and i say just do it,... When you go to the specialists they do not expect everyone to have agreed before them, they are the experts, that is why we go to them. I go to Stanford for this same reason. My Rheumy at home learns from the info i transfer back to him and the notes the doctors at Stanford send him. It is a win win.
I am a nurse and i am sorry if my opinions are too strong for you, but i really think you deserve more...
Good Luck with JH.
I have found out, after having PM for 2 years, that Prednisone stays in my body too long. So, it overlaps into the next day. Thus, I do much better with the 10mg I'm currently taking. However, I also found out that I need at least 5mg to keep helping my stomach & lungs. So, I advise trying to find a balance, unless JH feels the Prednisone doesn't help you at all.
Did anyone give you a CPK test?? Or a muscle biopsy? The muscle biopsy is, in my opinion, the best diagnostic tool for the M part of DM. I'm sorry you have terrible rashes. Maybe a Dermatologist skilled in DM?? My CPK number gives me a good idea how my muscles are doing.
Hope you feel better soon, fellow warrior! Everyone in this group is on your side.
Purr,
=^.,.^=
Also, if I'm taking too much Prednisone, I think I get stiffer. I've read on the 'Net, that too much P can actually cause Myositis.
But I'm not sure I'd be doing as good as I am now, if I totally went off P. My rheumy thinks 10 is a bit too little, but I feel really great now.
Purr,
=^.,.^=
I have felt SO alone in all of this. I'm single and have my 81-year-old father with dementia living with me. My sisters have basically just dismissed my diagnoses (they always call and want to know 'how Dad's doing' and VERY rarely ask about me). When I told them I was being sent to Johns Hopkins ... they just glossed over it and never even asked me if I wanted them to accompany me (it will be a 9-hour drive down to JH). I have one fairly close girlfriend who cares, but I think sometimes she's too afraid to ask me how I am.
After I put my father to bed each night, I fight the overwhelming desire to just start sobbing, but I'm afraid if I start, I'll never stop. I'm afraid of losing my independence, I grieve the loss of my healthy body, I'm angry at these diseases for making me feel so damn shitty, I'm frustrated that it is getting harder and harder to take of my dear father ... and it all makes me want to just sit in the middle of the floor and cry.
I'm sorry to be rambling about here ... but all these responses and the time you each took to read my post and respond ... well, it's the most anyone has really given me through this whole ordeal (without asking for a co-pay).
Again, thanks to each one of you! When someone said 'we are all on your side', it literally left me breathless ... and then I smiled.
I promise you John Hopkins will have seen all sorts of nutty things in charts. they are looking at the over-view, not the tiny details of a doctor who is too stubborn to say Hey i am not qualified in this particular area, let me find someone who is...
Family can be tough, We don't look that sick. Might be time to ask the family for more support in caring for dad. The more you can take care of you the easier the treatment and recovery will be. Over doing it can cause things to get worse.
Many ways to manage to despair. some take anti depressants, some join a support group, some find a therapist helpful. But we will always be there for a listening ear too...
Wonder if you can treat your friend to a trip away, so she can help you get to JH. That much driving would do me in...
Blessings to you, shawna
Keep fighting and forget what that Dr. said. We all just have to search to find the right team for US! :)
I know this is an old and moldy post, but I wanted to provide an update.
Woo-hoo .. Johns Hopkins called me almost immediately upon seeing my records ... and they ARE seeing me. I almost cried. I have to wait until late August, but I'm okay with that. Crud, it's been a 10-year journey ... what's another 2 months??
I also saw my pulmonologist yesterday. I told him I was so disappointed with the 'new' rheumy. He wanted to know what was going on. I told him that during my last visit with the rheumy, about a month ago, I had told him that I felt I was getting worse. My hands were now so painful and feel very tight and swollen, my fatigue is worsening, the protein in my urine is now up to 1+, and I feel like I'm dying in stages. He went over my labs ... they looked okay (my sed rate, my aldolase, CPKs were only high normal). He asked if I had started exercising yet (for God's sake, I can hardly walk down my hallway) ... and then pronounced that I was 'fine'. He told me to have a good summer, reduced my prednisone again to 12.5 mg per day ... and said he'd see me in three months.
My pulmonologist was flabbergasted. He totally agreed with the plan to get me to Johns Hopkins.
But I'm scared too. Scared of being told again that everything is in my head. Scared of being dismissed. I have so much hope for this upcoming visit.
Please pray for me. And thanks for listening yet again!