Still no definate answers!!!

Hi all,

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!!!!!

12 Replies

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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:

    healthunlocked.com/pmrgcauk...

  • 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.

    Best Wishes & Welcome 🌺

    Mrs N

  • Thank you 😊

  • Hi

    I used to get the buzzy trembly feeling when I had done to much right at the beginning once I learnt to rest and not try to do to much it soon went .

    As other say have to reduce very slowly but you will get their .

    Rose

  • Thank you, its lovely to have such great advice. 😊

  • Hi I started off with a stiff and painful neck, and then flu like symptoms and then pains in my thighs, untill i couldnt get out of bed,

    I was lucky in so far as my doctor did the bloods and my ESR and CRP was very high, so she told me to go to A n E,

    I met a young doctor there and she took great interest, and she thought it was PMR (which I nevery heard of ) she said she would try to get a rheumatologist to come and see me,

    I was waiting a good few hours but rheumatologist came to see me and as she said the only way they know it's PMR is if pain goes after taken steriods..

    The pain wentsoon after. I was put on 20mg pred. And I was on this for 2 weeks.and only when I was reducing (on rheumatologist advice) I was down to 12.5mg when I developed jaw pain and headaches.to cut a long story short, I went on to get GCA

    Which often wonder if the inflammation had of been under control first would I have gone on to get GCA who knows? Really hope you get sorted. Good luck

  • Thank you for your reply, I so appreciate it 😊😊

  • 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....

  • Thank you so much for your reply, I really do appreciate it 😊😊

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