1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Confused as to what is going on...

Posted , 8 users are following.

linda82701_USA
linda82701_USA

I remain confused as to what is going on with me.  I know that many of my PMR symptoms are well controlled by the prednisone, but the stiffness and pain I have on each side of my spine from below my waist to my shoulder blades puzzles me.  At first I thought it was something other than PMR, then thought it was PMR.  Now wonder if it truly could be a flare of PMR.  Am on 15 mg of pred and afraid to go down.  My doc has given me 1 mg tablets so I can reduce by .5 mg to 1 mg when I decide to.  Even just sitting typing this post has my back starting to stiffen and throb.  Don't see my doc until July.  Yesterday just picking spent blossums off my petunias had my back aching.  Can't seem to do much at all involving any bending.  Sometimes just walking makes my back muscles, ribcage muscles stomach and abs tighten and get stiff and I get out of breath easily.  Yikes!!

4 likes, 17 replies

17 Replies

  • ptolemy
    ptolemy linda82701_USA

    Posted

    Before I took pred I had pain in my shoulders right down my back plus thigh and hip pain. After starting pred I still had pain in my shoulders but the other pain went away. If your pain is so much that it is limiting what you can do you may need more pred for a while. Did you start at 15mg? Can you phone your doctor for advice? 
    • linda82701_USA
      linda82701_USA ptolemy

      Posted

      Hello.  I actually started at 20 mg in January.   After 6 weeks my doc had me reduce to 17.5 mg.  Pain and stiffness came back. He had me go to 40 mg for two days then back to 20 mg.  5 weeks ago I reduced to 17.5 mg again and then two weeks later reduced to 15 mg where I currently am.  Still have the back pain and stiffness.  Other PMR symtoms remain well controlled.  Am going to go back to my doc.  Thanks for your reply.
  • tina-uk_cwall
    tina-uk_cwall linda82701_USA

    Posted

    Hello linda, I am not a Dr but the pain could be existing pain still  not under control because your dose is not enough, or it could be another condition that does not respond to preds . If this pain does not improve perhaps you should go back to your GP . How long have you been on preds for and what doses. Regards, christina 
    • linda82701_USA
      linda82701_USA tina-uk_cwall

      Posted

      I have been on prednisone since January.  Started with 20 mg.  After 6 weeks my doc had me recude to 17.5 mg.  Pain and stiffness came back. He had me go to 40 mg for two days then back to 20 mg.  5 weeks ago I reduced to 17.5 mg again and the two weeks later reduced to 15 mg where I currently am.  Still have the back pain and stiffness.  Other PMR symtoms remain well controlled.  Am going to go back to my doc.  Thanks for your reply.  What a journey we all are on.
    • tina-uk_cwall
      tina-uk_cwall linda82701_USA

      Posted

      Hello linda, oh dear linda, I think your GP,is attempting to reduce you too quickly.15mg for 6 weeks

      12.5 mg for 6 weeks

      10 mgs for anything up to a year (I was on this dose for 6 months)

      from then on its following Eileen's go slow and almost stop regime.

      however, many sufferers cannot take the tapering regime pre Eileen's go slow and almost stop. Therefore only reduce by 1mg every 4-6 weeks. Personally I stay on each dose for 6 weeks and now I'm on Eileen's go slow and almost stop regime only ever reduce by .5 and not 1 mg. I achieve that by cutting my 5mg tablet down the centre ridge line, and obviously make whatever dose I'm on by juggling the 5,1, and .5 tablets to make my dose.

      many patients start on 20mgs but you still apply the same principles.

      20, then 17.5, then 15, but as I said you may have to reduce by 1mg every 4-6 weeks as it looks as if your body doesn't like the big 2.5 drops.

      personally I would up my dose back up to dose were you felt the least amount of pain and stay there for 6 weeks then reduce in line with the 1mgs drop. I think you haven't got all the inflamation under control and you are forcing your reductions. Remember the dose of prednisolone has to be large enough to cover and keep under control the level of inflamation you have in your body, because you most certainly cannot take a lower dose and think that the inflamation will fit into the lower dose of preds, it just doesn't work like that. 

      If your GP attempts to rush or force your recovery you will simply experience unnecessary pain, pain that could possibly be under control at a higher dose, and or a flare which means that because you haven't been taking enough preds to keep the inflamation under control it simply flares up, because it can, and trying to get them under control takes even longer and in the end, you'll be on a higher dose for longer. All the best, regards, christina 

    • linda82701_USA
      linda82701_USA tina-uk_cwall

      Posted

      Christina,  Thanks so much for your input.  I think you may be right.  Too big of reductions at one time for my body.
  • jean39702
    jean39702 linda82701_USA

    Posted

    I think we have to be really careful about what we blame on prednisone. I've had PMR for more than a year and have reduced from 40 mg to 15 mg in the past 11 months.  My back gave me difficulty off and on for years before PMR and prednisone.  Aqua exercises kept the issue at bay for a long time and I continued doing these exercises following diagnosis.  

    Due to a strike, our local pool has been closed for 3 months and it's not looking hopeful that it will re-open any time soon.  Within a couple of weeks of not going to the pool my back began giving me grief.  The angle of packing a suitcase, making a bed, dead-heading blossoms garden plants, etc. is the most aggravating.  I also feel that my shoulder and arm muscles have weakened and are less tolerent of exercise.   I have had some relief with Bowen therapy.  I expect things would also improve if I did some easy back stretching and strengthening exercises.  

    It's so frustrating trying to decide the best way to react to the variety and intensity of aches and pains that pop up off and on, sometimes for a few days or longer.   :-(  I don't know how many time I've asked muyself "Is this a flare? Should I increase?" !  So far I haven't increased more than .5 mg a couple of times for a day or two. 

    • linda82701_USA
      linda82701_USA jean39702

      Posted

      Hi, Jean.  I have tried water exercises, too.  Unfortunately it didn't help.  I can see that many of us have stiffness and pain other than PMR.  I do know that prednisone has helped.  I think I tried to put up with the pain and stiffness for too many years before seeking medical  help...ie water arobics, chiropractors, PT, ibuprofen.  Maybe waiting so long has made it harder for the prednisone to do its magic!?!
  • pat38625
    pat38625 linda82701_USA

    Posted

    Hi Linda, sorry to hear you are still in pain.  As someone suggested it may be that you are not on a high enough dose.  I have no medical background so cannot advise but would add that you should not be suffering unduly.  Please see your dr. soon.  All the very best and let us know how you get on.    Pat
  • pat73046
    pat73046 linda82701_USA

    Posted

    Hu,Linda. I have had PMR before but No One not nurse or doctor asked me if I was taking it easy. This nurse has said it I am not sure how much activity to attempt.l still have to cook,wash clothes,take hubby to Dr. This for three people. I need to find someone to dust,vacumb,and sweep .husband uses walker to walk I give meds--APPROX 25 PER DAY. I JUST AM GETTING REALL FATIGUED and would like to know others routines than you,Pat
    • linda82701_USA
      linda82701_USA pat73046

      Posted

      Hello, Pat, 

      Thanks for your responses.  No doctor or nurse told me anything about PMR let alone that I should take it easy.  The only things I know about PMR I have learned on this forum from all of you!

  • EileenH
    EileenH linda82701_USA

    Posted

    A dose of 15-20mg of pred should generally manage the PMR pain and stiffness well. Then you look for the lowest dose that produces the same result - and for many patients that works well down to well under 10mgs if all they have is PMR.

    However - there are a couple of other things that are often found along with PMR which may also respond to higher doses of pred and tha tis the primary reason for using just this moderate dose of pred - use very high doses and all sorts of things may be masked.

    One that would fit with your description is something called myofascial pain syndrome (MPS)  - I've written about it all over the place on all 3 forums. Where PMR is caused by inflammatory substances called cytokines being released into the body in the early morning and getting all over the body, MPS is concentrated spots of the same substances which often form hard knots in the muscles, especially at trigger points alongside the spine: in the shoulders just between where your bra strap sits and your neck, alongside the spine about level with the ribs and in the lower back where your dimples are on your butt! These inflamed areas can irritate muscles and nerves, leading to referred pain. Your back muscles often respond by going into spasm to protect your spine from damage - and it is VERY painful! It is often aggravated by leaning forward - an action that puts enormous strain onto your back muscles, as does the activities of sweeping or using a vacuum cleaner. Walking also aggravates it.

    When I first had PMR with no pred, I used an osteopath every so often which helped - but the best help I got was with Bowen therapy. Quite a few ladies on the forums have tried it (at my recommendation) and it has helped them a lot.

    When I had a really bad episode here in Italy 3 years ago I ended up in hospital and they used pred/painkillers/diazepam in infusions and it worked fantastically, just one lot made a massive difference. However I reacted badly to the diazepam and I was handed over for slower manual therapies. I had cortisone injections into the hard back muscles and the pain specilaist also did manual mobilisation of the trigger points - slower but also effective. It took a few months but it's almost all gone. What's left I manage with Bowen therapy.

    Do consider trying it - it looks wierd but it is very effective for this sort of thing. I call it a "PMR add-on" - it is quite common.

    • linda82701_USA
      linda82701_USA EileenH

      Posted

      I think you have exactly described my pain in MPS.  What is the Bowen Therapy?  I will look it upon the internet.
    • EileenH
      EileenH linda82701_USA

      Posted

      Google Mitchell Mosher podiatrist Bowen therapy video and you can see how it is done - it looks bizarre but truly it has helped a lot of us.

      Lodger on this forum was stuck in bed for about 6 weeks - could just make it to the bathroom next door using a zimmer frame. A friend managed to get her down the stairs and to her car and drove her to my therapist, Joanne Hewitt, where she got to the room with the friend on one side and a walking stick in the other hand. After a single 1 hour session she walked back to the car on her own and had to go back to fetch the walking stick she had forgotten! If you google "Joanne Hewitt Bowen" you will get a link to her website which is a bit less esoteric than Mosher's ;-) but his videos are good.

      I recommended it to one gentleman and he said he thought it looked a load of hooey - but he had happily accepted the concept of using acupuncture! Didn't see the logic myself! There is to be a trial in the NE of England of using Bowen therapy for patients with back pain that hasn't responded to conventional therapies - in the same way acupuncture is offered.

    • EileenH
      EileenH linda82701_USA

      Posted

      Mitchell Mosher is in the USA.

      Look for American Bowen Academy Bowenwork - with a search function by zipcode.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.