Polymyositis: recently been diagnosed. now on... - Myositis UK

Myositis UK

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Polymyositis

sickofpm profile image
7 Replies

recently been diagnosed. now on 50m steroids. thing is I've taking tablets for 6 weeks and they have made absolutely no difference. I can barely walk 10 mts.

would love to here from others who can give me a target where I should be feeling better, if there is a target of course.

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sickofpm
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7 Replies
Jo-Goode profile image
Jo-GoodeAdministrator

Sorry to hear of your recent diagnosis. Was you diagnosed with an MRI and muscle biopsy? Normally you would have expected some improvement by now, so it could be possible to have another condition.

in reply toJo-Goode

You should be feeling the benefit of 50mg of steroid by now as Jo said it may be another condition.

sickofpm profile image
sickofpm in reply to

I thought the same. my legs are just so weak. my fingers and toes lock and my ribs spasm a lot. I feel no benefit from the tablets at all. I have a CT scan today so lets see what that finds.

sickofpm profile image
sickofpm in reply to

they have started to look at other conditions. had a camera and and have other scans planned. hoping for the best.

in reply tosickofpm

Hope you get some idea what's wrong , it's the not knowing that's the worst thing, let us know how you get on 🤕

sickofpm profile image
sickofpm in reply to

Will do. Prostrate has been cheamcked and that's fine but they did find lump. That's had a biopsy I'm yet to know the out come. Could cancer mask my Pm from my steroids? I feel fine and and hesthly zo ill be surprised if i am poorly but something is stopping my legs getting better 😣

sickofpm profile image
sickofpm in reply tosickofpm

Sorry i have been away so long. Since my last visit i have been re diagnosed and I'm afraid i have MND/ALS.

No wonder i couldnt see any improvement lol.

Got everything in place at least, stair lift bath lift etc.

Apparently i have a life expectancy of 2 to 5 years. Nice try, watch me smash it.

Good luck to all. X

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