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pmr pain not being managed after over a month now

Posted , 9 users are following.

cheryl74384
cheryl74384

well, i had reduced from 40 mg on oct 12 to 20 mg around nov 2, for first few days, on 20, didn,t seem too bad, then after that, have had symptons returned, for last while, waking early hrs, 3- 4 am, with shoulder pain, cant sleep, getting up, take pred, 20 mg about 6:30-7, pain doesn,,t let up for sometimes up to 5 hrs later, then really very tired, try to have a sleep, some days can, others can,t, then pain starts to return, late evening somewhat, thing is my rhuemy went away about 2 wks ago, apparently was to return dec 12, now her voicemail says dec 18,last i spoke to her secretary, nov 10, instructions were to stay on 20, see gp for sleep aid, so now it,s another week and half i must wait to speak to her, thing is , i have seen many of you have done things on your own, without rhemy advice, like incr, or breaking up dosage, i am reluctant to do either, but i find waking so early, and in pain is wearing me out, find myself having bouts of crying in the early hrs with pain and fatigue, getting pretty discouraged , frustrated, depressed 

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  • snapperblue
    snapperblue cheryl74384

    Posted

    Hi, Cheryl:  A couple of points. First, as Eileen says, we don't know whether you have PMR.  Symptoms vary a lot and the things you mentioned could be PMR, a side effect of the pred, or who-knows-what else!

    Needing 20 mg or more does not preclude PMR.  Most people with PMR respond to 15 mg  of prednisone with a dramatic reduction in pain and stiffness.  I did not, and needed 25 mg.  This caused my doctor to question his diagnosis of PMR but in other ways a I was a classic case.  It took 3 or 4 months for me to get to 15 mg. 

    40 mg is a high initial dose if the suspected diagnosis is PMR. What were your symptoms before you had any prednisone?  Did the 40 mg relieve them?

     

    Did you drop from 40 mg to 20 mg in one step? 

    As to your doctors's rushing over your questions, I always bring 2 copies of my questions, one to hand the doctor and one for me to write answers on.  I find having a visual display of the questions helps the doctor to see them all at once and react to all of them. You can also ask for a copy of the doctor's notes, explaining you have trouble remembering all that was said.

     I agree with others that it is important to follow doctor's orders, but if the rhuemie is out of touch for 3 weeks, she should have designated somone to cover for her. If her office will not connect you to another rhuematologist, perhaps you could call your GP and explain the situation. As of today, you have been suffering for 4 weeks without any feedback from her except "carry on and I'll see you in 6 weeks." I find that outrageous! 

    • cheryl74384
      cheryl74384 snapperblue

      Posted

      well my gp started my on 40 mg, based on symptons, i gradually got to the point where i couldnt brush my teeth, hair, dress , get in and out of bed without excrutiating pain, shoulders, and also, a lot of pain in buttocks, and hamstrings, he said he thought i had pmr, and gave me script to start on oct 12, when i got so bad, then he had me drop to 35 after 3 days, 30 after 5 days, while waiting for appt with rheumy, which was on oct 25, at which time she had me drop to 25 after 5 days then to 20, seemed to tolerate all that ok, except had insomnia, some discomfort, the initial 40mg, took away pain within few hrs and was not bad, till about 10 days after being on 20 mg, even on nov 7 was not bad, and that day i did a lot of walking in a mall left home for that appt 11 am, returned home bout 4:30, felt tired but not much pain, next morning different story,awoke with stiffness and pain again, especially shoulders, not as bad as initial but still noticeable pain, so at end of that week, icalled her office, to see what she advised, as she was leaving for 3 wks, instr thru secretary, was, stay on 20, go to gp for sleep aid, and since then have had almost constant issues with pain, shoulders, each am when waking, awake thru night and up now with pain, only sleeping 2-3 hrs at a time, she is back tomorrow, will call her office, and update her thru secretary, i had also asked about splitting 20 mg dose, as ive read some patients have managed better on, but she advised not to do that then, 
    • Anhaga
      Anhaga cheryl74384

      Posted

      Yes it is such a pity you got that 40 mg at the beginning.  Although I felt improvement after about six hours when I started at 15 it was the third morning when I woke up and realized I had hopped out of bed with no trouble at all and mistakenly thought I was cured!  I have an acquaintance who was also started at 40 and is having an awful time trying to reduce - and she's been suffering since April, still has pain.  I don't think she'd ever got below 30.   I tried to talk her into signing onto this forum but I don't think she has.  You'd have a lot in common I think!

    • cheryl74384
      cheryl74384 Anhaga

      Posted

      oh yes would really like to share her experience, does sound a lot like mine, i hope you can encourage her to sign up with forum,thanks Anhaga

       

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