About two months ago I had a bad chest infection, during which I became surprisingly weak, mostly thighs and upper arm and the strength didn't come back once I was healed of chest infection.
It became a struggle to walk up the stairs, lifting my arm (let alone anything heavier) and my swallowing issues got worse and worse. I also have the typical rash on face, chest, elbows and hands.
Just before Christmas 2024 I saw the rheumatologist and I was admitted to the hospital the very same day in London. Currently I'm on 40mg of prednisone (for 3 days I had very high dose of iv steroids 500mg).
I had skin biopsy and waiting for muscle biopsy.
I do see improvement, so I'm hopeful.
Anyone with DM here? It's all very new to me, would love to hear any helpful advice that worked for others.
Best wishes,
Eva
Written by
Fluffyrainbow
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Hi , going on to medication made a huge difference to me when I was diagnosed. It takes time for the medication to kick in but it does help and things to do get better. The doctors will need to balance your medication to see what works and that may change over time. It is all very scary to begin with . Don't whatever you do believe everything you read online. A lot of that stuff is outdated and things are developing all the time. Take each day as it comes . Good luck and focus on one day at a time. Karen
I've been on prednisone for two weeks now, and I can definitely see improvement. It takes time. My muscles are less stiff and sore, and they regained some strength. They will put me on methotrexate and slowly decrease steroids.🤞🏻
After no treatment locally and now 3 months privately, with further tests on further tests , I have now been positively identified with having statin-induced necrositing myopathy ( previous I told it was NOT statin-induced). My ck level has dropped below 1000 ( was 7000 in 9/24) so heading in the right direction and once below 1000 for a month and inflammation under control, we can begin restrengthening. Yeah! Steady steps and we will get there. I will walk and step up again! So frustrating to have had no support locally.
I have my first local hydrotherapy appointment next week, almost 4 months after hospital discharge, and my 5th fall and 4th A&E in a year. What I will get I do not know…..anyone else had to wait this long?
But at last, I am on a road, and I can possibly see a destination, but will be a few wrong directions until I settle down.
So grateful to family and friends for their love and support.🥰
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