After reading some amazing info on here, l feel it's the only place I get answers. I was diagnosed late October last year. I had been suffering with a really stiff painful neck for quite a while, which my doc said would eventually get better...it didn't. My legs began to get stiff and painful and six weeks or so later whilst on holiday, I was struggling to walk and had to lift my legs out of bed. It was my osteopath that suggested I visit the GP and he sent a letter suggesting I had PMR which until that day I had never heard of. The GP just accepted his opinion and put me on 15mg Pred. Within hours I was getting my mobility back and the pain was disappearing. Anyway, to cut a long story short, I have had hip x-rays and shoulder scans, both fine. I was taken off Pred for blood tests just before Christmas and the pain started to return. I had to go and see another doc because I didn't want to spend Christmas in pain. This doc put me back on 15mg Pred and all was soon well again. An appointment was made for me to see a rheumie last Wednesday and hey-ho the hospital cancelled it and I have yet been unable to make another appointment as I can never get a reply. Anyway, I dropped my Pred to 10mg and was doing ok, but I am now starting to get muscle and joint pain. My arms ache as I write this, I have shoulder pain and get stange achy pains all over! My arms and legs feel a little trembly at the moment and a bit buzzy ( hope that makes sense). Do I need to put my Pred back to 15mg?? I have just read on here that it will do me more damage if the pain is not controlled. As I said earlier, I have had so many blood tests and seen 5 different GPs all of which don't seem to have a l it of knowledge or to be honest in some cases, no interest. Any advice would be truly appreciated. And I still haven't been given a definitive diagnosis, one says I have and one says I haven't......frustrating is not the word!!!!!
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Janieb293
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For the moment stick to the one who says you have got PMR! Your response happening in hours is fairly typical.
Go back to 15mg until the symptoms are controlled - it should be only a few days if you are lucky - and then reduce not more than 1mg at a time. No reduction should be more than 10% of the current dose to minimise the risk of steroid withdrawal pain - 5mg was 33%! Some people can't manage even that, especially as the dose gets lower. Then we recommend the Dead Slow and Nearly Stop approach:
Thank you so much for taking the time to reply so soon, it means a lot! I will start again in the morning on 15mg, and thank you for the link, much appreciated! 😊
Thank you for your great advice, I have put my Pred back up to 15mg this morning and feel better, the pain has improved and I feel more loads better knowing I'm not on my own 😊😊
Hi Janieb293
I see PMRpro has replied with wonderful advice, dropping from 15mg to 10mg is way too big a drop, some people manage to go from 15mg to 12.5mg but again it's still a big difference.
I hope you feel better in a few days & you can get your appointment rebooked soon.
Hi Janie, as I write this I'm feeling very trembly in my arms, and I would agree it's something that comes on after over-exertion - I've just been bringing in the logs for the fire. If I've walked a bit too much my legs tremble until I sit and rest for a while. Other days, when I'm taking things really easy, I don't get any trembling at all.
Have you managed the challenge of good pacing yet? I was diagnosed in September 2016 and since then have been trying to get to grips with managing the condition, but I still get moments of stupidity when I take on too much - usually after I've been lulled into a false sense of security by a few good days!
Keep it slow but sure...
I get the trembling once in a while. Sometimes in bed I think there is an earthquake and realize it is me. The worst time is when I tried to get downstairs where I used to live. I was on the 14th floor. Well it. Seemed like a piece of cake but when I finally stopped and was talking to someone my leg muscles everyone of them started jumping I don't mean a little twitch I mean all out trying to bust out jumping. Took about five minutes of sit down to go away.. Took the elevator back to my room....
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