Myositis UK

Hello - investigations pending

Just to introduce myself - I've been on the LupusUK Health Unlocked forum for some time now, after a diagnosis of MCTD (with ILD and Raynaud's) two years ago. I've been aking hydroxychloroquine and prednisolone but have struggled with fatigue and weakness for many months. Recently I've been experiencing soreness and pain in my thigh muscles and my CK levels have spiked. I am now awaiting urgent muscle biopsy etc as my rheumy says I have probably developed myositis. So I may be dropping in here more often soon!

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Welcome but sorry that you have to come here. It does sound like myositis. Keep us posted.

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Thanks, yes, I got the CK level result this morning - 1810. I'm alarmed at how quickly my thighs have got weak and painful. I'm now trying to sort out appointments etc as the usual chaos seems to have come about with multiple referrals/re-referrals that the hospital appointments systems seems unable to cop with.

If you have any tips about how to manage in the meantime, I'd be grateful. Should I be resting, or doing more exercise? Massage? Supplements? Thanks

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