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Hip pain

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christine1953
christine1953

Hi. I've been diagnosed with PMR since sept 2016. Started at 15 mg prednisilone now down to 6 mg. Over the last few months have had terrible pain in one hip and sciatica. I have mild arthritis in that hip. I am having private osteopath treatment Dr referring me for HSBC physio but said it could be months before I'm seen. He says I have Pitformus syndrome and sciatica and bursitus. Treatment is working. ...slowly. my question is. has anybody else had this and do you think it is connected to PMR. Should I up my pred to see if it helps. Any advice please

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  • Twopies
    Twopies christine1953

    Posted

    I had hip bursitis--bad.  I went to physical therapy a few times and got great relief...the exercises really helped.  I never increased the pred.  It was rough going until I got relief--almost impossible to sleep, but it did get better.  Yes, in my humble opinion (from reading this forum) it does seem to be a common complaint with fellow PMR-ers.  Best wishes to you, and keep us posted.  

     

  • ptolemy
    ptolemy christine1953

    Posted

    Yes I have had sciatica problems a couple of times. Pain killers were useless, but a physiotherapist worked wonders. I did buy a TENS machine too. I am not sure how good that was as I only used it once and the sciatica went away. 
  • liz12234
    liz12234 christine1953

    Posted

    Hi there, sorry to put the dampers on things but i have had bursitus for over a year now and in my shoulder affecting my neck. i have had lots of physio, done lots of exercises, got sent to the gym, had 2 steroid injections and upped my steroids all to no avail, i wish someone would come up with an answer im really fed up with it. Ive had PMR for nearly 4yrs been off steroids for 2months. Good Luck
    • EileenH
      EileenH liz12234

      Posted

      Why did you stop the pred? I need mine at a baseline to keep the bursitis under control - it is part of the PMR for me.
    • liz12234
      liz12234 EileenH

      Posted

       Only just seen this, i stopped taking steroids as it made no difference to the pain in hip and shoulder, that was back in January when i put it back up to 15mg. As per our private conversation i have put it up to 20mg this time and on day 2 its great, slight ache at end of day. Im hoping i dont get a GP like Christine when he/she phones on Monday , well i think i have enough to last my hols  so he can do one. Coming up to my 4th year with PMR but whose counting!
    • Michdonn
      Michdonn liz12234

      Posted

      Liz, I believe you always must keep a bit in reserve. I didn't the first time around and learned my lesson. I now take the amount that is necessary to control my pain. Then when I am stable I inform my Rheumy and get told I am a bad boy. ?? Thinking positive!

  • EileenH
    EileenH christine1953

    Posted

    Yes - I do. It is a mix of piriformis syndrome and myofascial pain syndrome as the rest of my back muscles are involved when it is bad You probably have got trochanteric bursitis? Piriformis syndrome and it often go together. Trochanteric bursitis is definitely part of PMR and higher doses of pred help a lot - and a steroid injection can work miracles. Myofascial pain syndrome (MPS) is caused by the same inflammatory substances as PMR except in PMR they are systemic and in MPS they form hard knots of inflamed muscles fibres that can be felt in the large muscle groups. They then irritate nearby nerves, causing referred pain. 

    When mine is bad I do raise the oral pred - but I also almost always get steroid injections for the bursitis and therapeutic massage to remove the knots in MPS and then I need less pred. I also tend to have to wait a few months tp get a physio appointent so I always put in a request long before it becomes a problem.

    • christine1953
      christine1953 EileenH

      Posted

      Hi Eileen. After 4 appointments with osteopath I wasn't any better so decided to up preds to try and see what what PMR and what wasn't. Immediately felt some relief. The osteopath asked me to get updated x-ray on hip to be able to move forward with treatment. When I mentioned to Dr. I had taken higher dose and why, he was not impressed. Told me that the piriformus and bursitis PMR are not connected !!!!!!! ! and to go back to lower dose. I so want to ignore him at least until next x-ray which is on Mon. Any advise smile ?

    • EileenH
      EileenH christine1953

      Posted

      Any advice?  Find a new GP who knows a bit more about PMR or who is willing to learn! Even my rheumy told me yesterday he always learns something from me - and he is a world name in the field!

      Bursitis is an integral part of PMR. Piriformis tends to be associated with myofascial pain syndrome - but MPS is found more often in people with PMR. The trigger points in MPS are concentrations of the same inflammatory substances that cause PMR except in PMR they are systemic, in MPS they cause areas of inflamed and hardened fibres which can be felt as knots in the large muscle groups. They irritate the surrounding muscle and also local nerves - you can have piriformis affecting the sciatic nerve in 2 forms: one where the nerve is actually through the middle of the piriformis nerve and one where it is the MPS doing it. And you can't really tell which is which. Physios probably can - I;ve yet to meet the GP who could. Even an orthopaedic specialist couldn't get it right for me. Said it was wear and tear in the spine and I'd have to live with it. Hence my scepticism about doctors on the subject! The Pain Clinic doctor here got it right though - and sorted it.

    • christine1953
      christine1953 EileenH

      Posted

      Thanks Eileen. All your info was so helpful. I've got x-ray on Monday and will show your comments to my osteopath. It all so makes sense when explained. I'm not lowering my dose until I am ready. I'm feeling so much better. I'm afraid until I got this illness , my Dr was exceptional. He still is but knows nothing about PMR and I have been in pain for months and fobbed off with pain killers but who can tell if I changed GP would I get one that knows the best treatment. Nope I've decided I'm on my own with a little help from friends here.

  • tracey81846
    tracey81846 christine1953

    Posted

    Hi, finally aftyer a year of being sent to one rheumatologist then to another who have all shook their heads and said im too young to have pmr, finally get an mri done and sent to ortheopedic consultant who tells me the hip pain is avascular necrosis, caused by the steroids and i now have to have both hips replaced. Feel let down by the pmr diagnosis as i possibly wouldnt have been on the steroids. So be careful as the steroids can cause this. 

     

    • veronica81435
      veronica81435 tracey81846

      Posted

      Same here mines started at age 44 🙁 I’m 50 now and still cannot shake the dam  disease  it off .  Just got digonosed with  GCA last October .  

    • veronica81435
      veronica81435

      Posted

      My hip pain started way before steroids . 
    • EileenH
      EileenH tracey81846

      Posted

      Then it is time your rheumies got up-to-date with the subject. The guidelines say "over 50". I was still 51 when the symptoms started and I also had "normal" blood markers - like about 1 in 5 PMR and GCA patients.

    • ptolemy
      ptolemy tracey81846

      Posted

      I was told by my orthopaedic surgeon that the steroids had caused problems with my hip. AVN is a mentioned side effect. I have had one hip done and it was so easy, I could not believe the difference it made. 
    • tracey81846
      tracey81846 ptolemy

      Posted

      thank you it gives me hope and have been told one day if i behave i may be able to run again.
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