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Could I still have Pmr with low esr results?

Posted , 8 users are following.

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I have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that........i dont know how I can cope any more with this dreadful pain!

1 like, 42 replies

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  • shawn99
    shawn99 Xxxxxtttttttttt

    Posted

    Hi there,

    Based on what you said, I would look for a new doctor. It seems that you are not being listened to regarding your pain.

    Nobody wants to be reliant on Prednisone and have all the potential side effects, but a quality of life is important.

    I could not function without Prednisone, but still willing to put up with the side effects.

    Good luck,

    Shawn

    • Xxxxxtttttttttt
      Xxxxxtttttttttt shawn99

      Posted

      She said it would give me diabetes, osteoporosis etc. she doesnt seem to understand that I can barely move, my sleep is disturbed throughout the night with the hip pain and I am often in tears cos its so bad and oramorph doesnt even help! God knows when the rheumatology will be and whether they will do anything. They seem to just pass everything off as fibromyalgia and " sorry theres nothing we can do, just keep taking tramadol and co-codamol".  Why?! It doesnt work! I want my old life back, ir at least some of it! I dont ask for much, just to be able to get outdoors for a walk, enjoy nt gardens, get my narrowboat back in the water! So fed up, sorry for moaning
  • christine26681
    christine26681 Xxxxxtttttttttt

    Posted

    You certainly can have normal ESR results with PMR and the fact that your symptoms responded so well to prednisolone does indicate PMR, particularly if the dose was 15 or 20 mg. What dose were you given?

    I am so sorry you are in such unnecessary bpain. Please ask to see another doctor at your GP surgery and/or another rheumatologist; someone who knows more about atypical PMR.

    What is your age by the way?

    • Xxxxxtttttttttt
      Xxxxxtttttttttt christine26681

      Posted

      Well i am only 46 and I know its unusual under 50 but not unheard of. I was given 15mg. I questioned pmr after all my symotoms came up with this. Also, after having the pred injections had worked, I thought the same thing, that if they worked isn't that an indicator that it could be pmr? They made such a huge difference, but doc said "no way, we would be giving you diabetes, osteoporosis, etc"
    • christine26681
      christine26681 Xxxxxtttttttttt

      Posted

      It certainly isn't unheard of under the age of 50, although rare. You are not that far off 50 after all. It is possible you might not have PMR but your relief from symptoms at 15 mg pred is classic and often used as an indication of PMR.

      A rheumatologist should run a whole gamut of blood tests to rule out other autoimmune diseases that can similarly cause muscle aches and pains.

      Yes, pred does have side effects but not everyone gets all of them and the benefit of bring rid of the awful pain outweighs the side effects in my view.

  • ElaineA
    ElaineA Xxxxxtttttttttt

    Posted

    Hello shaz. You may not have pmr. I was in awful pain and one doc diagnosed pmr even though my blood tests showed I didn't have it. All the same he put me on pred. I saw a different doctor about a chest infection and she asked how I was getting on with the pred and my pmr. Having a good chat to me she was sure I did not have pmr and sent me to a consultant rheumy. He too was convinced I did not have it but the stress I had endured over the last 12 months had given me pain that was dibilitating and the stress symptoms were mimicking pmr. They were right.I came slowly off the pred and on to painkillers and now I am not stressed, not on painkillers and I am pain free. Bear with it, don't take pred if you don't have pmr. There are more downsides than up with steroids.
    • Xxxxxtttttttttt
      Xxxxxtttttttttt ElaineA

      Posted

      Yes I do understand there are lots of cons to taking steroids and I have always avoided them, but after being house bound /bed bound most days over the last 20 months and crying so much with pain, I just cant cope with it anymore. I have seriously wanted to take all of my tramadol and co-codamol at once just to be free from it all. I make sure I have lots spare too. I won't cos I know how it wouod affect my children, thanks for advice 
    • ElaineA
      ElaineA Xxxxxtttttttttt

      Posted

      That is sad for you. Big hugs. There is light at the end of the tunnel, Take the pred and then get plenty of exercise. When you are feeling really good then perhaps you could try to wean down. If you have done loads of exercise you will have built up your muscles and lubricated your joints and you may just find you can come down off the preds and have no pain, but you must come down very slowly. It is no good being on a week and then stopping that was so wrong of your doctor to do that and I think that is why you feel worse. Good luck and I hope you are well soon x
    • christine26681
      christine26681 Xxxxxtttttttttt

      Posted

      This is a horrible situation to be in and you should be being helped. If steroids worked for you then you need them again asap. Please see a sympathetic doctor quickly. Sending you big hugs and good luck.
    • Xxxxxtttttttttt
      Xxxxxtttttttttt ElaineA

      Posted

      Thank you. Unfortunately doc wont prescribe anymore and wants me to see a rheumatologist so I have to wait god knows how long for that now x
    • karen1961
      karen1961 Xxxxxtttttttttt

      Posted

      I know exactly how you feel. I am 52 and cannot get my doctor to take my pain seriously. I have stopped taking co-codamol as it does not help and has its own nasty side effects. I know your despair,  I am so low because of this pain with no end in sight. My recent blood tests all came back normal leaving me at square one. I too have terrible pains especially in bed at night. My hip pain wakes me every night and I can hardly roll over. My feet too give me terrible trouble. I am going to keep going back to the GP until I get an answer. Don't give up! The support on here is fantastic and everyone here has a similar story. I know how depressed constant pain can make you. 
    • Xxxxxtttttttttt
      Xxxxxtttttttttt karen1961

      Posted

      My hips are so painful in bed too, it feels like someone has driven a screwdriver through them after i have been lying on them, sometimes only for ten minutes, if i fall asleep for a while and ignore it, its the worst pain in the world! I fell asleep for two hours this afternoon and when I woke up I could not move my leg even slightly cos of the pain in my hip, it was just awful. I am so hungry now and cant get any food cos of the pain. Just dont know what to do. Dont want to ask the kids to cook for me, my daughter made me a coffee which was nice but blimey I am  hungry! 
    • EileenH
      EileenH Xxxxxtttttttttt

      Posted

      Karen and shazzy - both of you sound as if you may have trochanteric bursitis and the answer to that is cortisone shots into your hips. And no - it doesn't hurt much and certainly not compared to the pain you are obviously in at present. Here I got the shots from the orthopaedic specialists but it could also be diagnosed by a physio and referred on. You can have it as part of PMR and when ignored it just gets worse and exercise/stairs make it worse. 

      Look for doctors who take your pain seriously: one lady wrote a letter to her GP with a diary of how it affected her day to day living. That seemed to sink in. If it is male doctors - take your partner. It's disgusting but having a man to support you seems to concentrate their minds and they will treat at least one of you as a sensible adult. 

      Icing may help trochanteric bursitis - they used to suggest physio: it doesn't work well. 

    • Xxxxxtttttttttt
      Xxxxxtttttttttt EileenH

      Posted

      Hi Eileen, I was actually diagnosed with that by my gp but after seeing the ortho spesh he said no its not. He did xray and mri. Said there was a small tear in the muscle on one side but my worst hip showed absolutely nothing apparently. My hips first started suffering just after I had my daughter almost 18 years ago,lasted a few years but only at night time. When it started again 2 years ago it has been constant all day and night but worse at night if I turn on my side which I do, cos when I lie on my back, my right leg goes totally numb from the knee up and my hands and arms up to the elbows. He gave me steroid injections, doc said they were prednisolone, and i felt wonderful for three weeks each time. I am hoping for another one next week, but he said i can only have 3 and that will be the third. I was walking great and generally felt great immediately after them, I didnt think they would work but was so made up to be proven wrong, just wish they lasted longer than 3 weeks
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