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Like many here I'm trying to stretch out the last years with some activity.

Posted , 9 users are following.

paul45653
paul45653

It seems that PMR and pred will fight me all the way. Two and a half years since onset and almost two years since Dx and start of pred. I am down to 6 mg now getting ready with my Rheumy's blessing to drop to 5 1/2. I have the usual set of side effects, if there is a usual set. But two months ago the left hip started giving a problem when putting weight down. Had to stop tennis and even used a cane some of the time for balance. The rest period and some tramadol now and then have removed about 80% of the problem, But then the knees went into pain mode a couple of weeks ago. I reviewed my xray from 30 nov last year "Impression: Mild bilateral osteoarthritis" I could bore you with the entire conclusion, but it did not indicate anything to give ny current symptoms. So my post is asking if there is any indication from anyones experience to point to a flare? And how many of you helpfull folks experiment with your dose to validate your suspicions.

Paul

1 like, 10 replies

10 Replies

  • judytal
    judytal paul45653

    Posted

    Hey Paul, I have used the "slow" method and I am now 30 days without Prednisone.... However I do take 2 Aleve everyday.  I am not PAINFREE but  I am happy to be off Predinsone.  I do have some knee pain (both) but I can handle it.  I also have left shoulder pain for 2 years now! Again I can tolerate it most days.  It does wear on me especially thru all this my physicians don.t really believe I have PMR.  

    I had really severe fatigue but thank God that is gone.  I try to walk on treadmill 20 mins every day and do some core work.  BUT. I'm not back to my self yet.  I believe there is still something in my body that is causing all this grief.  Will it ever go away?  I'm trying to stay positive,,,,

    all the best to you with your decision.  

  • tavidu
    tavidu paul45653

    Posted

    Hi Paul. Well done for getting down to 6mg and I hope you succeed in getting off them entirely. I am still at 12.5mg and drop.0.5mg a month but always have a week of alternating my dose each day, ie one day 12.5 the next day 12 then back to 12.5 then 12 again etc and it seems to work for me. Good luck and I hope all goes well for you. Dave (tavidu)

  • constance.de
    constance.de paul45653

    Posted

    Hi Paul!  It's not PMR and Pred that will fight you - they will 'eventually' disappear- however, you will have to fight osteoarthritis, that will, unfortunately, stay with you!😡

    The experts say the only way to deal with OA is to excercise.  All very well, if you can!  On some days I'm in agony (hips, knees and ankles).  I have had atypical PMR for nearly 4 years and sometimes can't tell whether it's that causing me such pain or the PMR.  I used to be able to tell the difference quite easily (muscle rather than bone!), but as the OA has got worse I find it more and more difficult to differentiate.

    You might find it helpful to join the OA forum - lots of advice/help on there.

    Good luck!

    Constance

    • Anhaga
      Anhaga constance.de

      Posted

      Have you heard about using a vibration plate?  Apparently it is something that really helps improve bone density and is helpful for people who may have mobility issues or whatever and cannot walk much if at all.  I've no personal experience of this, but I'm sure I've read either here or on HealthUnlocked about someone using one.
    • constance.de
      constance.de Anhaga

      Posted

      Yes, it was me!  I have had one for a few months now.  The National Osteoporosis Society says there is no evidence that the plate has any effect on bone density.  However, it is good for excercise and balance.  It takes a time to get used to it (talk about "you're all shook up")!

      Constance

    • EileenH
      EileenH Anhaga

      Posted

      If you can combine a PowerPlate (that's the brand name) with use and some activity they do improve muscle performance. The trouble is the sort that really work (there are two forms) cost a lot and are difficult to find in some places. My gym in the north of England had one - I used it and really liked it. Sitting with your back against it was very good for a sore back!

      A study did show it helped residents in care homes with balance and reduced fall rates.

    • constance.de
      constance.de EileenH

      Posted

      That's really cheered me up "care homes".  Thanks, Eileen!
  • EileenH
    EileenH paul45653

    Posted

    I would ask your doctor/physiotherapist about the possibility of trochanteric bursitis as the cause of the hip pain - typical description of what it feels like and rest helps it. The best approach though for lasting relief and being able to do things is a steroid injection or 2. It typically improves at higher doses of oral pred and then resurfaces at lower doses.

    Alternatively, it could be either myofascial pain syndrome or piriformis syndrome, both of which can cause referred pain into the hips and even as far down to the knees and ankles by irritating nerves and muscles. 

    I. and several others with similar symptoms, have benefitted from Bowen therapy. It dosesn't do a lot for PMR per se - but it can help the add-ons which can lead to symptoms that are very similar to a flare. A good physio who understands the problems that go alongside PMR is invaluable - finding one is another matter. Ordinary physio is NOT the answer so be very wary, be sure the physio DOES get the concept of PMR and muscles that are acutely intolerant of exercise.

    • dan38655
      dan38655 EileenH

      Posted

      This sounds like the hip bursitis pain that I have occasionally had lately, which can make walking up/down stairs very painful.

      I did find that adding just 1mg of pred to my daily 3.5mg cleared up the severe hip joint pain the very next day, so perhaps a slight adjustment to dosage is all that is needed.

      I don't ask anyone before adjusting my dosage. I experience random changes in my dosage requirement, so adjust my dosage immediately in real time. Usually a 1mg "boost" works wonders, and is only needed for one or two days.

      I will be seeing my rheumy for blood work for the first time in two years this week. I was given the usual prescription of 15mg/day, to be reduced by 1mg/month, but that prescription began needing adjustments after I got down to 5mg, and perhaps should have been adjusted sooner. But there is no way that a doctor can know what small dosage adjustments will be needed along the way. That seems best determined by the patient, with the doctor kept informed at some regular intervals, especially when difficulties and/or higher dosages are involved.

  • paul45653
    paul45653

    Posted

    I want to thank all who replied with good info and suggetions. I lost my thread temporarily in the vertual trash bin. I wqent for some good walking at the local flea market and decided I had more to gain by taking the bit in my teeth and going out to the tennis court than resting. I was able to play for an hour and a half and the longer I played the looser I felt. Im going to try two sets tomorrow after taking a tramadol. Will keep you advised.
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