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Blood test results and trying another painkiller??

Posted , 6 users are following.

linda17563
linda17563

Having been in pain with back and knees for many weeks (been on Pred 4 years, now at 10.5mg,) and rheumie sent "suggestions" to doctor that maybe it was fibro (had 20years) more than PMR causing pain.  Had blood tests, also for RA (my sister has it) doctor now rang, she said very good results......CRP 1...ESR normal....indepth RA test normal...now suggests....Duloxetine....for neuropathic pain??  My doctor knows I struggle to take meds so starting on very low dose....20mg.  I would appreciate any comments on this please, anyone else taking this....and hopefully it`s ok to take with pred!

i feel I`m chasing my tail to get answers, and even suggested I would pay  for another opinion from another rheumie, but doctor says there`s no point because inflammatory markers show no inflammation!

Would a physio/osteopath have answers?  my knees are so stiff!!

Thanks for any suggestions/comments...

1 like, 12 replies

12 Replies

  • constance.de
    constance.de linda17563

    Posted

    Rheumies do seem to think "bloods normal, not PMR"!!  Will any of them ever learn?  How many of us long sufferers have been faced with this attitude I wonder?  Do they never read updates/improvements on PMR?

    I've come across 3 physios who had never heard of PMR!  I give up!

    • Anhaga
      Anhaga constance.de

      Posted

      I think I must be one of the luckiest people.  My physiotherapist is a dream, and has actually held me back from overdoing things physically!  I asked her the other day how she knew so much about PMR, and she said she has a good friend who is a rheumatologist.  So that rheumatologist must have some competence.  

       

    • ptolemy
      ptolemy Anhaga

      Posted

      I think I have found my physios and osteopaths more knowledgable than the rheumies!
    • Anhaga
      Anhaga ptolemy

      Posted

      i haven't seen a rheumatologist.  Don't suppose I will.  Not sure it is standard treatment here as the question never came up, except when we were discussing osteoporosis.  When I said I would never take OP meds my gp cancelled the pending referral. I think there would have been a year's wait so I wouldn't have seen her yet anyway!
  • Anhaga
    Anhaga linda17563

    Posted

    Given how many people have problems with their physiotherapists I suggest you ask around.  Ask people you trust who may have some knowledge.  When you make your first appointment ask if they know about PMR and listen carefully to the answer.  The main thing is that they will not require you to do strenuous or repetitive exercises.  The protocol my physiotherapist follows has been to help me improve the health of my spine - a lot of pain originates there although it's felt elsewhere - and the exercises I do at home are mostly to help me retain range of motion and to strengthen the core.
    • linda17563
      linda17563 Anhaga

      Posted

      Thank you for that...Eileen did once advise me to interview physios etc first, I wish it was that simple in the UK.....but will do my best....
    • Anhaga
      Anhaga linda17563

      Posted

      Even if you have no choice in whom you see, it won't hurt to have the conversation.  It will be worth the extra time.  If they assure you that they know all about PMR it's probably a good idea to persist a little bit and find out what their expectations are of you.  There is no way that you will be able to respond to treatment the same way as a regular patient as your condition is chronic - you aren't looking for a cure, just the best way to manage your symptoms.  As you recover, you'll be able to gradually do more, but that has to wait on your recovery, not on the expectations a physiotherapist might have of a "normal" patient whose muscular strength would naturally improve with exercise.  The physiotherapist also has to know that your medication weakens your muscles, another reason not to expect you to get measurably stronger; just retaining what you have is good!💃😁
  • karenjaninaz
    karenjaninaz linda17563

    Posted

    Linda, ,prednisone will not help your fibromyalgia. Current medical science considers fibromyalgia to be brain based and not inflammatory. Duloxetine is considered in the US to be the drug of choice for fm. It is seratonin reuptake inhibitor. It is used successfully as well for depression and chronic pain. Two of my friends with fm have had good success with it.

    I t is not used for neuropathic pain; lyrica and gabapentin are used for that.

    i suggest trying it at the lowest dose; it may take a couple of weeks for it to help. Check with your pharmacist about interaction with pred. Could your PMR be in remission and fm is rearing its ugly head now?

    • linda17563
      linda17563 karenjaninaz

      Posted

      Thanks for that....i don`t know if the PMR is in remission, and I don`t think doctor/rheumie knows either, I am a "compilcated case" I`v been told, and I accept that, because it`s difficult to explain the different pain etc....but I can`t be the only one can I in this situation!....

      I don`t have depression....only frustration with the pain/stiffness that is restricting my life so much....it seems to stem from my lower back/pelvis and pain/ stiffness down my legs, and especially in my knees...I have to walk down stairs sideways, it feels that if I`m not careful I will rip a tendon or something in my knees....it`s difficult to explain....so obviously the "powers that be" go by test results!  This is why  I`m hoping maybe a physio/osteo might know?

      i am going to try the Duloxetine at a low dose of 20mg at night..because I do not tolerate meds, so if feeling bad...dizzy/nausea etc, it hopefully won`t be so bad at night!

      I have tried Lyrica/Gabapentin/Amytryptiline....couldn`t tolerate any of those.  I`m not negative and desperately want something to ease things....but afraid I don`t hold out much hoperolleyes...Thanks again

    • constance.de
      constance.de linda17563

      Posted

      Linda, I too have had PMR for 4 1/2 years - also a complicated case!  Neither the rheumatologist nor the doctor knows what to do with me!😡

      On Monday I go into a specialist rheumatology clinic (for the second time!!). I was in there 2 weeks last time.  I'm really hoping they can help me to deal/get rid of this pesky illness.

      Having very active OA, Gout and Osteoporosis doesn't help though.😡😡

       

  • Marla0415
    Marla0415 linda17563

    Posted

    Hello Linda! I think many of us can relate to your "tail chasing" comment. I have felt the same way through this PMR journey and I've been at it just over a year not nearly as long as you. To get little relief or have continually nagging symptoms is disheartening.

    To get to the point of your question on the Duloxetine. I have taken it safely while taking my Prednisone. My RA dr wanted me to continue reducing my steroids and have my GP manage my pain while doing so. (This all backfired and I ended up on a higher dose of Prednisone!) When I went to see my GP about that she told me I have also have Fibromyalgia. She suggested Duloxetine and called it a pain modifier!?? She started me on 30mg daily eventually to 60mg I don't easily start new meds either but since at the time I was suffering from lowering the Prednisone I agreed to try it. I did not suffer any ill effects from it and I thought perhaps it helped a little. however then my inflammation markers started rising along with my pain level so they put me back to a higher dose of Prednisone. Duloxetine will not help the PMR symptoms. I felt it had helped me a little butI can't say why or how. So you see "tail chasing" !! It's just something we have to do to find the best course of action for ourselves.

    Have you ever had cortisone injections in your knees or back? I have had knee issues for years and cortisone injections always did wonders for me. I now have bursitis in my hips and have had cortisone injections in them along with taking the Prednisone for PMR. It helps!

    I hope you soon find relief Linda. We all know what this is like. Best wishes to you

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