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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amberhere 03/18/2015

Hi all, I saw my Rheumy and Doctor recently who said DM/PM could possibly burn itself out! Its not unheard of apparently although rare but with that comment from them it brought a lot of hope. I thought I would share that thought for everyone here to bring hope when sometimes the world seems a pretty tough place.

autumm 03/18/2015

Hi Amber. Thank you for the post. I am hoping after nearly three years since diagnosis with no problems and finished t he steriods in 2013 that my Rheumatologist may let me taper the Azathioprine or come off it. I am unsure it will happen because of the Anti Jo. I wonder what makes a Rheumatologist decide to stop the Dmards. Has anyone any ideas on this. Autumm

lexisgirl 03/19/2015

When I visited Johns Hopkins, she thought I had burned out the PM as well. She took me off MTX but within a month, we learned that is not the case. Regardless, it can happen and it is absolutely worth pursuing to see if that is in fact true.

Her deciding factors were my level CPK over several years, ability to maintain without Prednisone for several years, recent EMG showing inflammation but not severe, and physical examination.

I have my fingers crossed that you have burned out and able to get off your meds without issue! That is fantastic news.

trpt1 03/19/2015

Hi Amberhere, It depends on the definition of " burn out" as to whether it is good or bad. I have been unable to find the definition of burn out in regards to myositis. I am going to need to learn a lot more about the true meaning of "burn out". It is always important to ask a lot of questions.

Autumn, you already know several reasons why a DMARDs might be stopped. You could give me a good list right now from all that you know about these meds - give yourself some credit!

I know that you and all of us might read puzzling posts on other sites that make us really wonder about the situation. We can only be responsible for our own health. I think it is important to know what to expect down the road for my DM/Scleroderma so I have no surprises. I read up on different types of effective meds so I can educate myself on what is available. We can just do our best, trust The Lord and move forward.

Best Wishes.

autumm 03/20/2015

Hi TRPT. The only thing I know about PM with Anti Jo is that the Anti Jo requires long term suppression. I am doing well and grateful for that. I should ask my Rheumatologist but I am scared of the answer. Scared he will keep me on the drug and scared he will take me off it. I think I have buried my head in the sand and just go walking on. I have great faith in my Rheumatologist and I just go along with where he leads me. I will probably not ask but wait until he tells me. Not very grown up but it's the only way I can handle this phase. Autumm

sammyw 03/23/2015

Hi Amberhere. Thanks for the ray of hope..wouldn't that be wonderful! :)

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