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Any suggestion welcome!

Posted , 5 users are following.

linda17563
linda17563

I have read my problem a few times on here, but just wondered if there were any other suggestions!

​I am in 5th year of pred...got PMR for my 60th birthday!....have lowered in past with flares, and always had to go back up to where I started 15mg.....I am down to 10mg now (yesterday).....dr is leaving it to me, told her I`m doing the dead slow method, because rheumie wanted me off fast and always had flares.....because I have fibro as  well....(20 years)...it is very tricky.....

​I  now have a lot of  low back/pelvic/leg pain which I haven`t really struggled so much with before...It is difficult to sit stand or walk....

​I have been to physio twice, had light massage, and acupuncture....which helps for a few hours, but she is wary of treating me (and I agree) until I am settled at this dose, and we both agree that until we kno what is doing this....lowering/flare/physio/PMR?....it`s seems a minefield to work it out.....but with this pain and fatigue.....I just wish I had the answer!

​Any suggestions very welcome, thank you...

0 likes, 12 replies

12 Replies

  • walter98524
    walter98524 linda17563

    Posted

    morning Linda, I was on pred 10mg for 9mo. im tapering off 1mg/mo and its working for me. im down to 5mg now and feel fine. if you feel like you need some help

    ​with the pain i take ALIEVE it works for me. IM 74 and ride a bike 7-8 mi every day

    you have to some exersize. well its time for me to ride my bike. have a nice day.

                                  Walter524

    • linda17563
      linda17563 walter98524

      Posted

      Thank you Walter, I can`t find ALIEVE anywhere on the web, are you in the Uk, it may be under another name?
  • ron25099
    ron25099 linda17563

    Posted

    He meant "Aleve." A 12 hour pain reliever. It's a Bayer product, but there are generics available.

     

    • linda17563
      linda17563 ron25099

      Posted

      Thank You....sounds good to me.......if only I could tolerate medication!
  • Anhaga
    Anhaga linda17563

    Posted

    Aleve is brand name for OTC naproxen and maybe not a good idea to take too regularly with pred as it is very hard on the stomach.

    Has your physiotherapist given you any core strengthening exercises?  Most of the ones I have are done either on all fours or lying on my back, and are usually very easy to do.  The only time I ever had problems was when I had undiagnosed PMR.  I feel these exercises which I've done for many years now are the main reason my back is not a total wreck and nearly always painfree.  Have osteoarthritis in lumbar spine, among other areas, and over the years had struggled with episodes of low back pain in particular one "episode" lasted a whole year.  Now, when I do have occasional back issues they clear up very quickly as I carry on with the exercises.  Only untreated PMR has ever interfered with my capacity to do them.

    • linda17563
      linda17563 Anhaga

      Posted

      Yes, physio did give me gentle core exercises, like I did many years ago at Pilates...but even those gave me leg pains (both) which are I think muscular...and brought on knee pain....feels like if I go down stairs too quickly knees will give way and "tear"...even tried exercises  with pillows under back of knees......have over years had low back pain, but never so long as this and feels different, like it`s more pelvic....

      Thank you for your reply.

    • Anhaga
      Anhaga linda17563

      Posted

      Are you taking any other meds besides pred which might cause side effects like this?
    • linda17563
      linda17563 Anhaga

      Posted

      No, nothing....can`t tolerate meds at all really...
  • amkoffee
    amkoffee linda17563

    Posted

    Have you or your doctor considered that it maybe another illness causing it? It could be hypothyroidism. I was not getting a great deal of relief from the pred when I first started it but then discovered my thyroid levels were off and I just needed to change my dosage.
  • denisep911
    denisep911 linda17563

    Posted

    Hi Linda

    I have Fibro as well

    I've been diagnosed with PMR in May 2016

    Had a hard time with dosage at first . But I'm at 15mg and doing great with pain but very foggy and lethargic and weak. Are you taking anything for Fibro ? I just started to take lyrica. It's helped a lot with pain

    It's definitely hard to have the Fibro with the PMR.

    • linda17563
      linda17563 denisep911

      Posted

      I have always struggled with medication since having fibro....tried Lyrica a few years ago, but couldn`t tolerate it, just wish I could....can just about take 1 paracetamol.....and cope with it!......Thank You
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