Myositis UK

HI everyone

Hello everyone my name is Raj and after many years of struggling with walking and other things, I ended up having a stroke and it was then when I was in hospital 4 weeks later after every blood test scan I was diagnosed with polymyositis in January 2017, currently I,m taking 60mg of perdisidone daily and I I try to excerise by walking daily for 20 t0 30 mins 2 times a day at the moment is their any advice.

thank you everyone Raj

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Try and cope with any side effects of the prednisolone. I have taken it for 24 years and together with immunosuppressants it is an essential med for me and now down to 5mg maintenance dose. Carry on walking, I found little and often the best while I could walk. All the best for both your treatment at the moment and future health. Best Wishes to you.

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thank you Katie-G I'm taking it one day at a time

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Welcome Raj :-)

There is information and links on the pinned posts

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Sounds like you had problems for years that were not diagnosed properly, that's a sad situation that I've noticed in many people's stories. Good that you are getting treatment now, thanks for sharing your story.

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Once the treatment starts to work you'll start to get your strength back and you'll eventually feel a lot better. Coping with the drugs is a challenge, but you'll hopefully get to a point where you can come off the steroids, I did, and now just take them in short bursts if I absolutely have to. Are you on an immunosuppresant yet?

Take care exercising at first, listen to your body.

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not yet starting the ivig course of treatment in feb over a 6 moth period

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Hi Raj. I am sorry you have PM. I was diagnosed in 2012 and also started on 60 mgs of prednisone daily, a month later they added Azathioprine. I am well and stable and tapered and finished the steroids in December 2013. You will need time and patience to get there but you will get there. Walking is great. I started out walking, do ask anything at anytime. I usually have most of the answers by now. There is life after polymyositis. Best wishes. Mary

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