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Help, Pain in Hip, legs, back, Do I Need more Pred?

Posted , 13 users are following.

Elijo
Elijo

I started w/ PMR 2 yrs ago, have tapered to 3 once before with a flare, now recently have tapedered to 2mg.  I can move my arms very freely, but have many other aches, as above.  My MD just told me I don't have PMR any more due to lab tests.  I saw my orthopedist today for ain in hip and leg (due to a fall in May).  He thinks it is bursitis ( which I've had before) but did order an MRI since the Xray didn't show anything.  I came home and took 5 more mg. of pred. and am beginning to have less discomfort.  My question also is that since before when I needed pred my shoulders and arms became stiff and very painful to move, I don't have that now.  I am in a quandry.  Any advice from all of you experienced PMRers?  Thanx!!!

1 like, 19 replies

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  • lilian05079
    lilian05079 Elijo

    Posted

    Hi Elijo

    I had pain when i tapered to 2mg pred..but carried on regardless tapering off pred...i had bursitis in my shoulders..right shoulder worse than left i recently had a cortisone injection which has taken the pain away and have been assured by my ortho that it will heal with the right treatment....if i were in your position i would not go back on preds and deal with the pain by another method...but discuss this with your doc/ortho. You could discuss a cortosone injection with your ortho... the steroid in the injection remains where you are injected and does not go into your system...my very best wishes to you Elijo in whatever you decide to do..

    • Elijo
      Elijo lilian05079

      Posted

      Hi Lillian, thank you for your nice response.  I did refuse the injection this AM, awaiting thew results of the MRI that I will be having.  However, I could no longer put up with all of the discomforts, espec. since I couldn't even sleep last night due to terrible aching and discomforts.  I did take 5 more mg. of pred after I got home, and it has had a positive effect.  I really think I was going too low.     I have had medrol 80mg injections in my hip 2 or 3 times (spaced about 3 months) for trochanter bursitis with great relief.  However, I have been having too many aches and pains to be able to function properly, so I do feel that maybe I went down too fast, or too low.  My reg. MD said I do not have PMR anymore because of the normal blood results, however, we on the forum know that is not always true.

    • Elijo
      Elijo

      Posted

      Added note to Lillian:  However I had those injections prior coming down w/ PMR. (A little over 2 yrs. ago)I think it was warning of what was to come!
    • lilian05079
      lilian05079 Elijo

      Posted

      Hi Elijo

      When getting to low levels of pred most of the pain i experienced was bone pain brought on by the preds......severe bone pain for approx 6-8 months after discontinuing preds it eventually went away and was left with pain in my srms and shoulders which turned out to be bursitis...my rheumy sent me for a scan and xrays and i also had degeneration of the discs in the lumbar region and bone spurs causing pain in my hips and thighs also along with the shoulder bursitis i had degeneration of cartilage in my shoulder joints and bone spurs...so was diagnosed with osteoarthritis..which i am sure i had when first diagnosed wth PMR..but i was no given a scan or xrays at the time..so i genuinely think i was put on preds unnecessarily......my best wishes to you Elijo for a favourable result with your MRI scan......

  • Michdonn
    Michdonn Elijo

    Posted

    Question Elijo, how much relief when you increase your Pred. Does Pred have any effect on bursitis? Someone please answer that question. Think positive!
    • diana21296
      diana21296 Michdonn

      Posted

      I have just had hip bursitis for 8 weeks and from my experience pred doesn't help at all. But then I wasn't prepared to put up the dose and put me off track.  Rest, paraceptamol and ice is the answer and it slowly gets better on its own although one can try a cortisone injection which may or may not help.   I found that physio and ultra sound made it worse, although now I am better, I am doing the exercises to strengthen the hip muscles.  When I had it 7 years ago acupuncture helped it.  Hope this helps.

  • Elijo
    Elijo

    Posted

    Hi Mich,  Yes I do believe pred does have an effect on bursitis but would take longer, being systemic.  Mky ortho wanted to give me one this AM but I want to wait for the MRI to see what else is going on.  Hosever, when I got home, I did take an extra 5 mg. of pred. and do have to admit I feel much better.
    • Michdonn
      Michdonn Elijo

      Posted

      Good Elijo, glad you are feeling better!

      Thinking positive and smiling. 🙂

  • peggy_56092
    peggy_56092 Elijo

    Posted

    I have bursitis, Left hip, diagnosed with MRI a year before PMR.  My daily 6 mg dose of pred seems to relieve the pain, along with a cane to take stress off the joint.  The pain does return at night when lying down.  I did have a steroid shot earlier this year,before knee replacement, but did not notice more relief.
    • Elijo
      Elijo peggy_56092

      Posted

      Thanks for your reply.  The steroid shot had helped me greatly previously, and sorry your did not.  How do you get a decent night's sleep with the pain?

      How is your knesee replacement?  Did it take long to recouperate?  My daughter in NJ needs one, but runs her own business and has trouble "squeezing" it in.  Good luck to you!

  • peggy_56092
    peggy_56092 Elijo

    Posted

    I am told that It takes about a year for knee replacement to fully heal.  I have been on 6 mgs all year,except for trying to reduce recently (didn't work) so intend to stay on 6 mg for who knows how long.  You are given walking and exercises the day after surgery, have had no complications since May.  Weather permitting, dog gets walked at least once a day.  Had physical therapy twice a week during July, Aug, Sep.  

    Hip does not always hurt.  If I hadn't had bleeding ulcers during knee op, I would consider hip replacement.  I can live with the hip pain as long as pred around.  Don't know what I will do if PMR goes into remission, maybe try a shot again. 

    • Elijo
      Elijo peggy_56092

      Posted

      Hi Peggy, Sounds as if you are doing OK with your knee!  My friend just had a hip replacement almost a month ago, has PT 3 X wk., using a cane for now. Sounds as if you've been thru alot, what with bleeding ulcers!  Take care.

  • christophe38948
    christophe38948 Elijo

    Posted

    Hi,

    You are subsequent Pred's terror human being. The dose of the Pred "should " kill your pain, then slowly go down, no faster than 1mg/day per months. No pain should return. If you feel that the pain returns return 1 mg up a day per week and check if the pain is "killed". Then after week try to go down, if the pain return you should stay on Pred for subsequent month. This is Trial. There is no General Formula how to deal with Pred.

    Good Luck

    CW  

    • Elijo
      Elijo christophe38948

      Posted

      Thanks Christopher,  I do go down VERY slowly, and this time I really thoujght I didn't have PMR anymore!  What a joke!  I'd decreased a half mg. every 2 weeks until I got to 2, then aches and pains became my companion, thought it might be something else.  The MRI will be proff of the piudding soon!

  • nick67069
    nick67069 Elijo

    Posted

    "  My MD just told me I don't have PMR any more due to lab tests. " is troubling statement... When you take pred, you take it to manage/remove inflammation. Off course that blood test comes back normal.  But pred only manages symptoms, it DOES NOT cure PMR.  In my experience, you will feel PMR symptoms worsen before any blood tests show sign of inflammation. 

    I know that we are all different, but I had PMR approximately 2 years and  as far as pred dose I am at 4mg. When I felt symptoms coming back in the past few reductions, I quickly went back to previous, " feel good" dose. For me, it is not worth trying to reduce beyond comfortable level.   You might be too low on your pred dose, IMO.

    • Elijo
      Elijo nick67069

      Posted

      Thanks for your "right on" reply.  When my MD told me a couple months ago that my pain was arthritis, I told him that he never had PMR so may not realize the "feeling."    We have to educate them!

    • Michdonn
      Michdonn nick67069

      Posted

      nick67069, last week I had an my quarterly appointment with my Endocrinologist, she was happy my PMR was under control my CBC, both CRP and ESR we're in the normal range, my A1C was too high. She understands that if PMR is undercontrol the reading are normal. Good luck with the rest of your journey, hope you can find a doctor who understands. Think positive! 🙂

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