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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Cadolph 10/29/2013

I have mixed tissue connective disease and present with polymyositis primarily. I believe my doctor advised that it would be a good idea to get this vacinne?

Can anyone tell me what there experience is in regards to should I get it or not?

lexisgirl 10/29/2013

I was told I couldn't have it with my immunosuppressant medications because it is a live virus. If you are not on immunosuppressants, you should seriously consider it. I do think we are at risk.

autumm 10/30/2013

My doctor says 'no' to this vaccine because I take prednisone and Azathioprine. We are not allowed 'live' vaccines as Lexis has already posted. If not for my drugs I would have the shingles vaccine immediately. Autumm

trpt1 10/30/2013

Hi Cadolph. The herpes zoster (shingles) vaccine is one of several vaccines recommended by The Myositis Association research. The TMA recommends that the shingles vaccine should be started BEFORE taking any disease modifying anti-rheumatic drugs.

I have had DM for three years. I take a flu vaccine that is not a live virus each fall season. I have not had any other vaccines.

I know how you feel on this decision. There are so many decisions that come with having DM/PM. The issues of finding the most beneficial meds and treatments are often hard decisions. I think it is important to write down and ask the doctor about all your concerns. I have a lot of confidence with my doctor. I will ask for a second opinion on some occasions. This is a difficult disease that requires good communication, personal research, and confidence.

There are actually many opportunistic infections that can happen with DM/PM. I like to use the website Drugs.com. The Drugs.com site gives a lot of excellent information on meds, interactions, and many issues.

The Myositis Association website is another excellent site for learning much about DM, PM, and IBM. I know so many of us use the TMA site as an important resource.

Just last week, I told my doctor that I did not feel like getting the flu shot. The next thing that I knew, she was putting the alcohol on my arm and sticking me with the needle - My doctor does not put up with "no." HA!

There have been many times when I have felt like a German Shepherd going to the vet... You know, strong & bold at home, but the skids suddenly go on when reaching the doctors office!

I know how you feel. I wish you well on your decisions. Keep us posted.

autumm 10/31/2013

Hi TRPT. My Rheumatologists insists on the flu shot and last year made me have the Pneumonia shot which is given every ten years. I am glad he was so insistent the more I read about our poor immune systems. Autumm

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