Hello - investigations pending

[whisperit]

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!

[Goldyukr]

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

[whisperit in reply to Goldyukr]

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

[angus50]

Hi Whisperit

I am so pleased that your rheumy is acting quickly. I too have lupus and suffered like you with muscle weakness pain etc, so much so, I couldn't get out of the chair. My rheumy unlike yours said it was just the lupus and gave me extra steroids which made little or no difference. This went on for years and I did lose a lots of muscle because of it, thankfully I then moved area, got a new rheumy who thankfully decided to do a muscle biopsy and after years of not knowing I was told I had myositis. I have since been given treatments and although I do still have lack of muscle, things are much better. I wish you a speedy answer and the right treatment. See you here again maybe.

[whisperit in reply to angus50]

Thanks angus,

The biopsy showed polymyositis and my steroids have been stepped up and started on azathioprine. Not much improvement yet, but I'll be seeing my rheumy for review nest week. Hope you see some further improvements very soon x

[angus50 in reply to whisperit]

All the best my thoughts are with you.

Kind regards

Angus

[Hidden in reply to whisperit]

Whisperit. Sorry to read your post. I find this site really difficult to navigate so may never find you again. There is life after treatment for Myositis. Azathioprine has been the wonder drug for me. I have remained well and stable on it since 2012. I tapered and finished the steroids in 2013 and have not. needed them since. My Rheumatologist has just this year started to lower the dose of Azathioprine. I need long term suppression with Aza as I have the Anti Jo auto antibody. I found the Aza took about 6 months to kick in and work for me. We need time, patience, right Rheumatologist and the right meds to get on top of this, exercise is as important as the Meds and you need to start as soon as your Rgeumatologist says it's ok. Your family doctor can refer you to Physio to start but in the meantime walking is great. I bought a very cheap pedometer and build my steps from zero to 10.000 steps a day. Best wishes.

[whisperit in reply to Hidden]

Never fear, Clonmel, your reply found me promptly enough! Thank you for your thoughts, and the cheering tone. Good to hear you have done well x