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 Everyone:
Oh my gosh, it has been a while since I have checked in - I have been on the road for about a month. I own a business with my daughter, a retail store, and we had buying trips in Las Vegas (hot) and then Seattle (perfect weather). I had a 5 day trip along the Oregon Coast for work, then a five day river rafting trip in Central Oregon - a work-trip with 5 public transit directors where we did strategic planning in the morning and rafting in the afternoon. That's my other business - a [planning/consulting firm - I struggled a bit to get out of a low raft - but otherwise it was good.
Hard to believe a year ago I was in bed or a wheelchair during August - through December, and just dumped the walker in February of this year. It turns out I had NAM - Necrotizing Autoimmune Mediated Myopothy - sparked - we think - by the Statins in Red Rice yeast.
Last week was my last week on Prednisone, but still on MTX and Imuran. The doc says we'll taper MTX next month and see just how I do on Imuran probably for another year. NAM tends to bounce back once drugs are stopped, so we'll see.
The docs discovered a "clicking" in my heart last year when I was in the hospital for myositis, and did an echocardiogram. The Cardiac Doc told me to get to my GP in the next 10 months and see what next steps were for a congenital defect in my heart (well great - didn't know I had that!) My GP and Rheumy told me not to worry about it - but I got a copy of the echo and saw that I had a bi-cuspiod valve and WORSE a large diameter aorta - almost the size of an aneurysm. So I got myself to a cardiologist at OHSU that deals with heart defects, and he thinks I may need an ascending aorta replacement surgery next year and heart valve replacement in 5-6 years. YIKES! He was very happy I didn't wait and went to see a specialist in spite of 2 other doctors. Not many people survive an aortic aneurysm burst.
So - despite the fact that I had surgery 2 months ago to take out my gall bladder that MTX toasted, and both eyes having cataract surgery because of the Prednisone, it appears that more surgery is in order. Open heart surgery, no less. at the age of 55. So when I work out, I can't lift more than 50 pounds, but I can do most else. Work is going well, and I'm a finalist for a director position at the county level - which would give me another layer of insurance to pay for heart stuff.
But otherwise things are good - I am so happy to be moving that everything else seems like a piece of cake. With myositis - I thank goodness every day for great friends and (generally) good doctors, and Western medicine that really saved my life. So onward and upward, and thanks to all of my friends on this site that have been so optimistic. I guess, in the end, all we really have is each other!!
Oh my gosh, it has been a while since I have checked in - I have been on the road for about a month. I own a business with my daughter, a retail store, and we had buying trips in Las Vegas (hot) and then Seattle (perfect weather). I had a 5 day trip along the Oregon Coast for work, then a five day river rafting trip in Central Oregon - a work-trip with 5 public transit directors where we did strategic planning in the morning and rafting in the afternoon. That's my other business - a [planning/consulting firm - I struggled a bit to get out of a low raft - but otherwise it was good.
Hard to believe a year ago I was in bed or a wheelchair during August - through December, and just dumped the walker in February of this year. It turns out I had NAM - Necrotizing Autoimmune Mediated Myopothy - sparked - we think - by the Statins in Red Rice yeast.
Last week was my last week on Prednisone, but still on MTX and Imuran. The doc says we'll taper MTX next month and see just how I do on Imuran probably for another year. NAM tends to bounce back once drugs are stopped, so we'll see.
The docs discovered a "clicking" in my heart last year when I was in the hospital for myositis, and did an echocardiogram. The Cardiac Doc told me to get to my GP in the next 10 months and see what next steps were for a congenital defect in my heart (well great - didn't know I had that!) My GP and Rheumy told me not to worry about it - but I got a copy of the echo and saw that I had a bi-cuspiod valve and WORSE a large diameter aorta - almost the size of an aneurysm. So I got myself to a cardiologist at OHSU that deals with heart defects, and he thinks I may need an ascending aorta replacement surgery next year and heart valve replacement in 5-6 years. YIKES! He was very happy I didn't wait and went to see a specialist in spite of 2 other doctors. Not many people survive an aortic aneurysm burst.
So - despite the fact that I had surgery 2 months ago to take out my gall bladder that MTX toasted, and both eyes having cataract surgery because of the Prednisone, it appears that more surgery is in order. Open heart surgery, no less. at the age of 55. So when I work out, I can't lift more than 50 pounds, but I can do most else. Work is going well, and I'm a finalist for a director position at the county level - which would give me another layer of insurance to pay for heart stuff.
But otherwise things are good - I am so happy to be moving that everything else seems like a piece of cake. With myositis - I thank goodness every day for great friends and (generally) good doctors, and Western medicine that really saved my life. So onward and upward, and thanks to all of my friends on this site that have been so optimistic. I guess, in the end, all we really have is each other!!
I am sorry to hear about your heart situation. I think it was wise for you to get the second opinion on your heart. I do agree that second opinions are important with this disease.
I wish you well. Stay positive. You certainly have an inspirational testimony. I need to find a way to quit wimping out with all the pain. I would like to move forward career wise, inspite of this disease too. I do think optimism and determination helps. Keep us posted.
Keep at it, you will do well in whatever you do...
shawna