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Side effects of withdrawal or PMR

Posted , 8 users are following.

Bert5560
Bert5560

I asked a question a week or so ago about digestive problems and steroids/ PMR but I guess I' alone on that one. Anyway, I have new question . I tapered off of prednisone a little over a month ago, in addition to all the digestive problems I have pain in both shoulders again and pain in the lower back radiating to thighs, it feels rather muscular. I spent most part of the day in the ER yesterday. They did a CT scan of the lower back and tell me they see a lot of arthritis. In addition to all this wonderful stuff, I am severely depressed and having panic attacks! This is Hell. I see my PCP today, Endocrinologist on Tuesday and Rheumatologist at the end of the month! I'm sick of doctors. Can someone give me more insight to Bowen Therapy?

0 likes, 12 replies

12 Replies

  • EileenH
    EileenH Bert5560

    Posted

    Google Bowen4life - videos and explanations about it.

    If you have PMR, tapered off pred a few weeks ago and now have returning pain in shoulders, low back etc then the most likely answer is that the underlying cause of the symptoms we call PMR, an autoimmune disorder, is still active and the inflammation has built up enough for you to notice it again. A course of pred does not "cure" PMR - it is a chronic disease and you take the lowest dose of pred that manages the symptoms for as long as it takes for the autoimmune disorder to burn out and go into remission. That can be anything from 2 years to 15+ - although somewhere in the region of 4 to 6 is more common. But it doesn't go away quickly, pred or no pred. Depressed mood is also a symptom of PMR.

    • Bert5560
      Bert5560 EileenH

      Posted

      How long have you been on Prednisone? Does Bowen Therapy help? Many doctors here in the US are not even that familiar with PMR, I can't believe there is no other therapy except Prednisone. It's a shame many in the medical community don't take it seriously. 

    • EileenH
      EileenH Bert5560

      Posted

      Bowen therapy helps the add-ons - it won't do a lot for the PMR itself. But it is worth trying because it may remove some of the pain and stiffness and every little helps. if it doesn't at least make a difference after 3 sessions it may not be worth pursuing further - but for many the relaxation effect is worth it, a bit like massage but far gentler which is a good thing in PMR. Gentle is the watchword - deep or sports massage may make you feel worse in the shortterm because it releases more of the cytokines that give rise to the inflammation and hence pain and stiffness of PMR.

      I have had PMR for over 12 years and been on pred for over 7 years - I wasn't diagnosed for 5 years. 

      There is currently no other drug that manages PMR except pred - other drugs have been tried, some rheumatologists think that using one or other of the DMARDs used in RA can reduce the amount of pred used - but they don't replace it and they don't work for most people as well as having their own side effects. I think they work to some extent for patients who have some RA as well, you can have both.

      I've met a load of US rheumies who do take it seriously - but you're right, it does tend to be the poor relation in the rheumatology world and I don't think a lot of rheumies like patients who can only be managed by allowing them to stay on "that dreadful drug pred" indefinitely. So they force you off it quickly because they don't understand the nature of the disease.

  • stella-dk
    stella-dk Bert5560

    Posted

    You could try and get some pred tablets called Rayos to help with your PMR pain. They are coated and not hard on the stomac, but quite expensive. If that is not an option you could buy empty gel capsulets on amazon or other place an break ordinary preds in halves and put in. Also get Ranitidine tabl. to protect the stomac. Maybe a small amount of tabl ( temporary ) to help you relax. And then get a good thinking of your life in general.  Talk to friends and family - find support. Is there anything you can improve to make your situation better at the moment. These things work for me. Good luck.
  • Anhaga
    Anhaga Bert5560

    Posted

    In a way I am bemused by depression being considered an additional thing along with all our other ailments.  Personally I think depression is a perfectly normal and understandable reaction to conditions which so negatively impact our lives by causing chronic pain and depleting our energy.  It would be more strange, I think, not to be depressed!  That's not very helpful is it?  But talking can be one of the best therapies.  I'm getting quite good at letting people know I'm not 100%, hopefully without spending too much time on it and boring them.  Interesting, by opening up one does start to learn about other people's journeys, too.  We are all in this boat, human life, together.  All of us companions on this journey. 

    • tpaggs
      tpaggs Anhaga

      Posted

      I agree.  It's great to have a support group.  We all need encouragement and it helps immensely when you can communicate with others who actually know what you are going through.  I'm glad I found this group as I didn't know anyone who had PMR.

    • Anhaga
      Anhaga tpaggs

      Posted

      I didn't realize my daughter in law's father had been diagnosed with PMR around the time I must have got it, at the beginning of my undiagnosed year.  So we can share when we meet.  He has a lot more health issues than I do.  But I think I'm good support for him.  He seems happy to chat with me.

  • stella-dk
    stella-dk Bert5560

    Posted

    I just want to add - you are not alone having digestive problems with pred. I have seen many posts from people who have that. And I must admit I don´t have panic attacks or any other psychological problems, so I can´t get the relaxing pills I recomended you. Maybe I should´n have - but you said that life for you is hell. And that is no good. I hope you feel better soon. Let us know how it went at your doctors app.

  • tpaggs
    tpaggs Bert5560

    Posted

    Sounds like a reoccurrence of PMR to me.  Flare-ups happen and you probably need to go back on prednisone.  Of course, discuss with your Rheumatologist.

    ?I don't know anything about Bowen Therapy.  Sorry.

  • walter98524
    walter98524 Bert5560

    Posted

    IM ON PRED 8MG FOR 6MO'S AND WHEN I FIRST STARTED TAKEING

    ?IT WITHOUT FOOD I HAD STOMACK PROBLEMS, NOW I TAKE IT WITH FOOD

    IN THE MORNING AND NO PAIN AT ALL. (AND NOT JUST TOAST)

    ?                                   WALTER98524

  • Bert5560
    Bert5560

    Posted

    Thank you so much for all your replies. Like I said , in the US when you tell people and even some doctors why you're on prednisone they look at you like you're bonkers! 

    I did see my PCP , she called my Rheumatologist. He said to start  me on 10 mgs of preds twice a day and to see him sooner than the original plan. I've only taken 1 so far, so I start the twice a day today. PCP also ran some blood tests, so I feel a little better, but still in a depression. I'm so glad to have this website.

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