Thankyou all.

[Jenlouh]

Thankyou all so much for your support and words of wisdom. I'm having a much better day emotion wise. I am in quite a lot of pain and feeling much stiffer today but not as bad as before the Pred, so hopefully it won't get any worse. I'm going to have a good chat with my GP next Wednesday to so how to proceed and going to keep a diary. It's just the rheumatologist was adamant I had to come off the steroids within the next 6 weeks so she could re-evaluate me as she says polymyalgia is out of the question because of my age so I'm doubting the GP will go against what she says and slow down the withdrawal. However I will ask. Anyway I really appreciate all the help on this site.

Hope your all having a good day, X

[HeronNS]

Grit your teeth and do as the doctor says - except as has been wisely noted if you have visual disturbances in which case off to Emergency with you. I think you'll have to go through the slow withdrawal in order for the rheumatologist to evaluate whether you really do have PMR or another disorder. The problem lies with that initial high dose of 40 mg, because PMR's signature is that it nearly always responds to a much lower dose, closer to 15 or perhaps 20. A higher dose can mask the symptoms of other diseases, and it would be better if that diagnosis was confirmed before carrying on with prednisone which, for all its virtues, is actually dangerous for us and needs very careful management.

I really feel for you. I had over a year undiagnosed with increasing pain and disability, and it's not something I'd wish on anyone. Get lots of rest and be kind to yourself. It's not quite like having a broken bone, which is visible, but you are a poorly bunny right now and you do need to take life as easy as you can. 💕

[Jenlouh in reply to HeronNS]

Thankyou for your reply. I'm sorry to hear you had to endure more than a whole year before treatment. Well done for getting through it, it must have been hell. I agree about the problem starting on a high dose, I was quite worried when he started me on 40mg because I realise it is more than what most people start on with PMR. Anyway I will stay aware of any visual disturbances and hope that eventually this will all get resolved.

All the best and I hope you are getting on better 🌞

[HeronNS in reply to Jenlouh]

I seem to be doing well, thank you. The thing about my horrible year was I had no idea what was going on, and kept thinking if I only did this new exercise, or tried harder, I would get better. So you can imagine where that got me!

Hopefully things are soon on track for you.