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.

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What OHSU said

wonup
wonup
Great Doctor, looked about my daughters age. Knew her stuff! Because the muscle biopsy came back without the deep infiltrates of inflammatory cells of typical poly, it could be a marginal muscle sample. It could be a necrotic myopathy, caused by the Red Rice Yeast I was taking that can have a Statin myopic reaction, like cholesterol drugs. She wants a CT chest scan to make sure no cancer. I have a colonoscopy in January to double check. Because I am responding so well to MTX, and cancer induced would not, the Doc is hopeful for full recovery, and thinks Rheumy is doing all the right things. This Doc would have started MTX right away with the Prednisone in August. I'd asked the Neuro who was treating me at the time about starting both, but he wouldn't consider it.

Walking up the ramp with the walker at the front of the house, my knees gave away, and I crashed. Some guys were moving a hot tub next door, and helped my husband get me in a wheelchair and in bed. Pulled a left leg quad. But ice is on it now! Bummer! Sitting for so long was not good for my legs!!
nanny1611
nanny1611
It sounds like you had a positive appointment at OHSU, and I'm really glad for you. Hopefully as you go up on mtx, you will continue to improve and make greater strides (literally and figuratively).

So sorry about your fall today. Prolonged sitting is bad for me also. In fact, whenever I stand up from a seated position, I must stand in place for a few moments to gain stability. I'm glad there were people close by willing to help your husband get you up. I will pray for a speedy recovery from your fall. Thanks for the update.
wonup
wonup
Thank you Nanny. Although I am not thrilled about another CT scan, and the anxiety about more blood tests. It was good to know I'm on the right track. Falling was awful because I don't need more damage right now. But I'm thinking by Sunday my strained quad and wrenched ankle will be somewhat healed. It's making sure I can get out of bed and not have my ankle give way for another fall As I'm alone during the day. I have Lifeline in case something bad happens, though. Thanks again for being kind, like so many people on this site!
deleted_user
deleted_user
So sorry you fell and so glad you got to OHSU!!! For me it was really reassuring to have a second opinion from some one more familiar with Myositis than my local Rheumy. He is great for some things, but we both need the double checking and cutting edge knowledge a university center can give.

The CT is easy, just had one to look for ILD, and it was a snap. I would ask for both Colonoscopy and endoscopy at the same time. Same prep and then you are good for some years out!!! I did them separately and not so easy...

Take some time to rest up now and no bike today!!!
Be well, Shawna
wonup
wonup
I think the OHSU Doc wants to do the CT scan to look to make sure cancer didn't kick off this Polymyositis attack. I'm a little puzzled, because most kinds of lung cancer that kick off Poly are small cell, very aggressive, and your dead in 2 to 4 months from onset of symptoms. Plus most victims are make smokers. Not Me any of those. Also, it's been 5 months since onset of symptoms, no chest issues, coughing, etc. If I had lung cancer, seems like I would not be getting better. Seems like I'd be dead by now. Had a chest xray 3 months ago, clear. So just grumpy about yet another test. Back in the wheelchair and getting heaved in and out onto CT table by my spouse lots of effort. Whine, whine. Ok, moving on..... But thanks Shawna. It'll be FINE. Just gotta put my big girl pants on and mojo up. :-)
nanny1611
nanny1611
Just received a newsletter from The Vitamin D Council. One article starts with a letter from someone who took a statin and got myositis. After reading the article, I thought of you and wondered if your doctor(s) checked your vitamin d level. Here's the article in case you want to read it.
http://blog.vitamindcouncil.org/2012/10/24/dear-dr-cannell-will-d-decrease-statin-side-effects/
wonup
wonup
This was a good article, Nanny. My Rheumy did check vitamin D levels, and they were tanked 2 months ago. I'm on 50,000 units one a week, and 5,000 once a day trying to get levels up. It takes a couple months, but we test next week. Good article! Thanks for heads up!
trpt1
trpt1
Hi Wonup. It looks like you received some good answers from the doctor. I have not read up on necrotic myopathy, but that sounds interesting.

I am sorry to hear about your crash. I hope you will heal up quickly. I have put in a prayer for you.

I guess the main thing now is to concentrate on getting better. I know the CT scan is a great idea. I had a CT scan run at the onset of my DM. I hope you will have a fast recovery. Keep us posted.
wonup
wonup
Thanks trpt1. Necrotic is a subset of Poly, often more acute in it's muscle manifestation, and often related to steroid myopathy, cancer, or a virus. The muscle biopsy showed less infiltration of inflamitories than regular polymyositis. It also might not have been a great muscle sample. But we are checking for lung cancer, and we.most likely think it was the herbal supplements I reacted.to, the statins in Red Rice Yeast. Necrotic is treated more aggressively than regular poly. And is more refractive. But does not go into ILD or connective tissue stuff. Does really well on MTX, usually, and I'm finding some improvement on my new 20mg.dose of MTX. Lexisgirl thought I'd see improvement when I got to higher dose of MTX, I think she was right!