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Hip pain

Posted , 5 users are following.

Mousemum
Mousemum

Hi I just wondered if anyone could set my mind at rest. I have had GCA and PMR for nearly 3yrs now. I started on 40g prednisolone and have now got down, to 131/2gr I have done this very slowly and for the past few months have come down by 1/2 doses. I now find that I am having really bad pain in my left leg, hip joint. but none in my right. Do other people find this as my doc says you always get the pain in pairs (?).  I am only 64 and reasonable active considering the PMR. Can I have a bit of feed back please.rolleyes

1 like, 16 replies

16 Replies

  • mrsmop
    mrsmop Mousemum

    Posted

    Have you ever had a dexascan?  You should ask for one

    I have been experiencing a lot of pain recently and my Dermatologist [he prescribed the steroids for me] thinks that the steroids are actually causing my Polymyalgia.  I have dropped from 5mg to 3mg, also very slowly and haven't actually noticed any difference in the level of pain.  My pain became worse in about December, which was when I reached 5mg

    • EileenH
      EileenH mrsmop

      Posted

      That really is a new one on me: "steroids cause PMR"!!!! 

      Many doctors like patients to remain at 5mg for several months before continuing their reduction. The body normally makes about 7mg itself but stops while we are taking a higher dose than that and it takes a while for the whole system to settle down and get it right again. Marking time at 5mg for a while seems to help the body adjust. 

      The most likely reason for pain is either you drop in too big steps or too far - but there is no reason to believe the pain is caused by the pred. What is more likely is that you have another problem, maybe osteoarthritis, that was masked by the higher doses but is now coming to the surface.

  • Nefret
    Nefret Mousemum

    Posted

    Your doctor is fairly right, PMR does appear bilaterally in most patients - but not always - I found that the places where I had already had muscle/joint problems had the worse pain.

    I've got OA in my right knee and left hip, have you been checked for this?  There could be other reasons for the problem such as a lower back problem (giving rise

    to referred pain) or a soft tissue injury causing the same.

    If it is really interfering with your quality of life perhaps you should see your doctor again and ask for more tests?

     

    • Mousemum
      Mousemum Nefret

      Posted

      Thanks Nefret. Am seeing GP again this afternoon. Really dont want to up steroids again as its taken so long to get down to 13mg. Will ask about being tested for OA as it seems to run in our family. Can you tell me the name of that really good reduction plan. Im having a senior moment. Think its the Bristol or something like that. Or if anyone else can remember Id be grateful for a quick answer belolfore I go GP. This web site is a boon. Learnt more on here than at any doctors. Thank you all
    • EileenH
      EileenH Mousemum

      Posted

      Is there a chance the hip pain could be bursitis because that can start on one side? Get your GP to check both for OA and for trochanteric bursitis - the pain from both can be very similar.

      Sorry I'm a bit late, you'll have been to the doc by now - but I was off to Innsbruck before breakfast this morning!

      Nefret has given you the outline of the reduction that has been being suggested for a while, slower than the Bristol group suggested. Something very similar is being tried by a consultant in the northeast - he too is finding it works to both avoid steroid reduction pain (the body objecting to you offering it a lower dose of pred) and allowing you to identify the lowest dose of pred that works for you more accurately.

  • Nefret
    Nefret Mousemum

    Posted

    The usual slow reduction plan suggested is just - new dose 1 day, old dose 6 days, then new dose 2 days old dose 5 days. then new dose 3 days old dose 4 days etc.

    If at any time you feel it is too much you can have more than one week at the same dose/s without breaking the chain. Once you get to taking the new dose for 7 days, you can either stay at that dose for a week or so before commencing the next round, or if you feel ok then you just begin as before.  Takes a little longer but has very good results for some patients who find it difficult to reduce.  Once you get to 5mg it's a different ball game and is usually carried out in 0.5mg reductions.

    What you should never, ever do is force reductions.  Just leads to more problems in the end.  If you don't feel well enough or stable enough to reduce then just don't.  Wait a while till the situation stabilises and you feel confident enough to go on.

    • Mousemum
      Mousemum Nefret

      Posted

      Thanks Nefret. Will let you know how it goes.
    • Mousemum
      Mousemum Nefret

      Posted

      Hi Mrs O and Nefret. Have seen my doctor who is very supportive (a lady so says it all) She is sending me for an x ray. Doesnt seem to think its PMR but will wait for x ray results so more pain killers. Shes quite happy about my slow rate of coming off steroids and told me to take it very slowly unlike some of the other people on here who have not had good results with their doctors. Will mention about bursitis etc when I go back Mrs O thank you all for your valued support. Will keep in touch. And Mrs O really envy you your trip to Innsbruck lol
    • EileenH
      EileenH Mousemum

      Posted

      No - not MrsO in Innsbruck, MrsE!!! I only live about an hour and half drive away so it isn't a big deal for me - I'm there every few weeks as my husband works with a scientific group there a few days a month :-)
    • Mousemum
      Mousemum EileenH

      Posted

      I am so sorry Eileen I dont know what made me type Mrs O in. Senior moment. Once again thanks for your support redface
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mousemum

      Posted

      Oooh, it would have been nice to have been MrsE for a few hours this morninglol enjoying a trip to Innsbruck.lol

      I think we tend to get the pain "in pairs" in the early days of our illness, but I did experience the odd occasion later in treatment where just one limb would be affected - on such occasions, I often considered the pain to be more related to steroid-induced muscle pain rather than increasing inflammation due to a flare.

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      It was VERY  warm! 34C in a city is a bit much!!!!! Definitely a day for walking on the shady side of the streetredface
    • Mousemum
      Mousemum MrsO-UK_Surrey

      Posted

      Hi Mrs O and all the rest of you that have replied to me. Had my xray results and the hip pain is from osteo-arthritis in the hip and starting of it in the knee. Dont know whether I'm relieved it was something positive or would rather it had been PMR. Easier to adjust steroids than deal with osteoarthritis. Feeling a bit down about it all. sad

       

  • Nefret
    Nefret Mousemum

    Posted

    As I said earlier, I've got OA in two joints and have just been referred to physio to see what they can do.  I'm not expecting great things as I am aware that there isn't a great deal either they or I can do, but if I can strengthen the muscles around them it should help.  I'm sure that they will provide exercises for me to follow so I will see how it goes.

     

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Nefret

      Posted

      Hello Mousemum, I agree with Nefret that exercise to strengthen the muscles around the painful joints may be the best course.  I have to do certain stomach strengthening exercises to support the vertebrae at the base of my spine which has slipped forward.  

      Something else that may help is a product called Flexiseq which is fairly new on to the market and specifically developed to combat joint pain associated with osteoarthritis.  It is a pain relieving gel based on nanostructures called Sequessome-vesicles which are apparently able to cross the skin to target sites of pain and stiffness.  It is available from pharmacies although isn't cheap.  MrsK who posts on here recommended it some time ago after finding it worked well for her.

      It may well be that the pain will improve as you get down lower on the steroids.  I had awful knee problems in the latter stages of my steroid treatment which continued for quite a long time after going into remission but there has been a steady improvement recently (hope I haven't spoken too soon!)

      If you haven't had a Vitamin D blood test to rule out any deficiency, then do ask for one.  Such deficiency can lead to pain in similar areas to that of PMR, and a short course of high dose Vit. D3 is all that is needed to get levels up to normal.

    • Mousemum
      Mousemum MrsO-UK_Surrey

      Posted

      Thanks Mrs O do nt know what I'd do without all the advice I get from this site. Doctor is nice but always short of time. Will try the gel and meanwhile I have ordered a funky turquoise walking stick!!! I can always keep grandkids in line with it if hip gets better biggrin
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