welsh pensioner

I went to bed one night, feeling ok, next morning could not move without excruciating pain, left it a few days, then saw my doctor, blood test came back, diagnosis pmr, put on 20mg of pred, and told to wean off very slowly after 3 wks, but due to lack of monitoring, I suspect I came off to rapidly to fifteen, however after 3 yrs am down to 7mg, rheumatologist, tells me that my sleep is not deep enough, and has put me on 10mg of amitriptylene, I have a dodgy hip joint, which does not help, but the pain continues to be almost, as severe as when I was first diagnosed.

Tried to wean down to 6mg last week, but oh no, system was having none of it, now back to 7mg, pains everywhere, shoulders, arms, hip girdle, calves, feet.

mercifully, I can sleep, but getting up and moving is very painful.

I am to see my rheum in 3 mths time, hoping for answers.

3 Replies

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  • They seem to have omitted the basic caveat: wean slowly to THE LOWEST DOSE THAT MANAGES THE SYMPTOMS AS WELL AS THE STARTING DOSE.

    If you are in as much pain as originally there are two possibilities: one is that it isn't PMR, and the other (more likely one) is that you are simply at too low a dose. Perhaps your rheumy would like to consider that, if you are left in the sort of pain PMR causes, you are very likely not to be able to sleep properly!

  • Hello simfonia55

    I think like PMRpro says you may just be at too low a dose, sometimes it can just be 1mg more or even 0.5mg

    I'm currently on 6.5mg & find I have a lot of other aches n pains plus really bad knees, so sometimes it's hard to differentiate what is PMR & what is something else. I've had my knees x-rayed so I'll be interested to see what, if anything shows up! And, I'm waiting to see an U.L.Surgeon re my shoulder!

    Maybe try going up to 8mg & see if it makes any difference, it may take a day or two to kick in.

    Best Wishes 💐

    Hope you feel better soon

    Mrs N

  • Thank you, nice to hear from you, I have tried a extra 1mg, up to 8, I guess we need to monitor things ourselves carefully, and trust that one day the PMR will leave like it came, in my case overnight. Good luck. Alun.B

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