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Polymyalgia pain ..........

Posted , 14 users are following.

karen28161
karen28161

Hi William ,I am a 54 yr old female ,had PMR for 2 years now ,started on 20 now I am on the reduction and on 5 mg of pred .like every one else I am still in lots of pain ,especially in the mornings and after tea time when I tend to sit down and relax .every day my pain is some where different , but most commonly in my hips,knees ,arms and shoulder and neck .some days it really hurts when I sneeze or take a big breath in ,like my ribs are going to crake ,.oh and my husband says I have this funny little waddle like walk in the morning till I gat used to the pain .My rhumy is pleased with my reduction .......but just keeps saying to me well !you will still have a little pain as you cut down on your PRED ........wish for just one day only he could experience all the pain some of us on here suffer .rant over xxx merry Christmas to all of you wonderful people on here xxx

1 like, 63 replies

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  • david14272
    david14272 karen28161

    Posted

    Morning Karen. I just wonder if you are on a high enough dose of Pred to control your pain, I will leave it to the Experts on this Forum to give you proper advice. Dave.
  • pat38625
    pat38625 karen28161

    Posted

    Hi Karen, sorry to hear you are still in pain yet hopefully getting there.  If I had a choice between cutting down on pred and having pain or not cutting down and not having pain then I would not be cutting down.  Having said that I am a newbie just diagnosed last month and am on 20mg pred with no thought of cutting down.  Will wait until I am advised by dr or dr in hospital.  

    I honestly appreciate every persons contribution on this site.  Merry Christmas to you.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada karen28161

    Posted

    Hi Karen,  it is so awful being in constant pain and I have to agree with David that it sounds like your does isn't managing your inflammation.  I started 20mg of pred. almost 2 years ago and am down to 4mg but I have been there for 1 1/2 months and since returning from a recent holiday I can tell my PMR is not too happy so will likely stay there until after the holidays and all the running around is over.

    Reducing from 5 is a tough one for many, many of us.  I don't know what reduction plan you are on but I had to go to the" very slow almost stop" method of reducing at that point and actually stay on the lower dosage longer before starting to reduce again. 

    As David says you'll be hearing from the "experts" on this forum who have wonderful advice and alot of experience.

    I hope you get your pain in contol and have a very Merry Christmas and Happy and HEALTHY New year

    Hugs,  Diana

  • karen28161
    karen28161

    Posted

    Hi mrs Mac ,I have been on 5mg for about 2 months now ,I have tried to go down to 4 mg but pain is to much ,so staying on 5 mg till I go and see my Rhumy in 4 months , I do take ibuprofen 3 times a day ( I know some of you guys say should not take these tablets when taking pred ,my rhumy suggested taking them as they are not addictive he says ..... I take Lansoprazole to sto me getting stomach ulcers from the ibuprofen ....) thank you for your help and concerns xx
  • tina-uk_cwall
    tina-uk_cwall karen28161

    Posted

    Hello Karen, sorry to hear you're in so much pain, which as far as I'm concerned you shouldn't be. PMR is an autoimmune condition that results in inflammation and that inflammation in turn results in stiffness and considerable pain. Presently there is no cure only control of the inflamation. Once the inflamation is in control it goes that the pain and stiffness should not be an issue. I'm not saying that we are completely pain free, but I think we should be pretty much pain free. The most popular medication to reduce the inflamation and in turn control the pain is prednisone. I don't understand anyone that would still take the medication which I agree has side effects, and yet still put up with the pain, because surely you're going to have the same side effects like very one else yet with none of the benefits that the drug offers.

    your rheumatologist obviously wants you to taper off of prednisone Asap, well, don't we all. But it's been said many times the inflamation will burn it's out as and when it wants to and not before, the prednisone simply makes our lives bearable.

    i know that blood tests , ESR and CRP levels do not always show inflamation even when we are in much pain and therefore there must be inflamation, unless the pain is due to something else. What did your last blood tests reveal. All the areas of your body you're saying you are suffering pain are where I suffered extreme pain and I remember thinking that there must be something wrong with my heart the pain around my ribs was so bad. But, as soon as I took the prednisone within a very short time the pain had all but cleared up. I have experienced a return of pain twice when attempting tapering from 9to 8mgs, unsuccessfully so I upped the dosage again. I am a strong believer that only we know how painful our bodies are when tapering and I won't suffer the pain I went through prior to diagnosis, I don't think I could bear it. Karen, you must take more control here, and teper down as and when you can and not simply to please the clinicians or because you feel you need to fit into a schedule or a set recovery plan that you feel must work for everyone else, because it doesn't.

    i was diagnosed this  time last year although I had the symptoms since the September. Everything was fine on the slow tapering until 6 weeks ago when as I said I attempted to tepaer from 9to 8 mgs, twice. Clearly I must have still have a lot of inflamation because the tapering failed on both occasions, but I don't care. I will keep myself stable and pain free for quite a while and then try again.

    karen, do not suffer in silence, go back to your gp and be truthful with them because none of us deserve to be in pain. I wish you all the luck, and I'm sorry I've been so mean to you, but you don't earn extra points for tolerating pain when you don't need to. Christina 

    • pattik
      pattik tina-uk_cwall

      Posted

      Hi Karen and Christine,  I was recently diagnosed, Sept with PMR.  Excruiating pain in Neck, shoulders and hips.  I started on 20 mg of prednisone, and a month ago was cut done to 15 mg.  The problem is that I take it in the morning and it takes 4:45 hr for the prednisone to kick in.  The pain is so bad until meds kick in.  Does anyone take anything else to manage the pain?
    • pat38625
      pat38625 pattik

      Posted

      Just like yourself I was diagnosed 12th November and was put on 20mg of pred.  There has been no suggestion from gp that I should be reducing.  I have appointment on 8th January at Endocronology, so we shall see whats happening there.  I also have a review in January with gp.  If I am told to reduce I will, if I have pain I will not be suffering but will be managing pred to suit me and not the dr.  I could not go back to that type of pain it was excruitating and really debillatating.  I could not get into bed or out of bed or into the shower or out.  (Of course I had to because I have a 32 yr old son living at home) 

      I don't take anything for pain because I am not in pain but I would say that some people would suggest co-codemal, but please don't suffer pain, go back to your gp and explaiin.  All the best

    • pattik
      pattik pat38625

      Posted

      Thanks Pat,  I'm in the U.S., my Rheumatologist cut me from 20 mg to 15mg

      The first visit.  I've been in a lot of pain in the morning until prednisone kicks in abou 4:45 min after taking.  My husband has been supportive because I feel like a former shell of myself.  I am diabetic and the prednisone really has elevated my BS.  This is a nasty disease.  Thanks for the info

    • pat38625
      pat38625 pattik

      Posted

      I really do hope you get sorted.  There is nothing as bad as that pain.  I just couldn't go back to it.
    • EileenH
      EileenH pattik

      Posted

      What time  do you take the pred? It has been found that the optimum time to take plain white pred is at 2am - the pred is released into the blood just before the substances that cause the inflammation are released in the body. These cytokines, as they are called, are released about 4.30am so the sooner after that you can take the pred the less inflammation they have to combat. Some people who wake early to go to the bathroom take their pred and a drink and maybe a sandwich or yoghurt to bed with them and take them then when they wake before settling down again for a couple of hours more rest before getting up for breakfast. They find this speeds the relief process a lot.

      Reducing the amount of carbs you eat helps a lot with the blood sugar problem - and also the weight gain for many. Pred alters how the body processes carbs and that can be a problem as you have found - you have to be much more careful with your diet than usual.

    • pattik
      pattik EileenH

      Posted

      Thanks EileenH, I'm going to try taking them if I wake up earlier, with some yougart or cottage cheese.  Normally, I've taken about 7:30 AM and then suffer for 4:45 min.  when pred starts making a difference.  Thanks for this tip. I'll let you know.
  • tina-uk_cwall
    tina-uk_cwall karen28161

    Posted

    Karen I've read you latest post, and I will say it you should not be taking ibuprofen 3 times daily, and why is your rheumatologist using 2 drugs to attempt to control the pain of this condition. You must go to your gp, are they not looking after you inbetween rheumatologist appointments? And be honest with them. The pain that you've written about could be part of the flare up when you tried to reduce from 5to 4 mgs. Maybe you need to up it further to really get control of the flare up, because we're you pain free prior to the attempted reduction from 5 to 4 mgs? Good luck. Christina 
    • karen28161
      karen28161 tina-uk_cwall

      Posted

      Christina you were not being mean to me .it only what my hubby tells me all the time .up you Pred ,yes I was pain free when I was on 10mg ,so I have decided to go to my GP and explain that it's impossible for me to stay on 5 mg and I NEED to take a higher dose of PRED ,thank you xx
    • EileenH
      EileenH karen28161

      Posted

      Yes, Christina is absolutely right. It is actually very wrong of your rheumatologist to be telling you to use ibuprofen when you are also taking pred because mixing the two increases the likelihood of a gastric bleed, even with "stomach protection". Paracetamol would be better but it still isn't the way to control PMR pain. 

      It is, of course, also possible that you have had a return of the PMR at a higher intensity - it doesn't remain steady, it can wane and then flare up again. I have had PMR for 10 years, I know plenty of people who have had it well over 2 years and some have reduced a fair way and then had a relapse. The pred manages it not cures it, and you need enough to manage it until it dies down. Only a quarter of patients are off pred in 2 years, half need pred for more like 4 to 6 years.

      Christina is right - you need to go to your GP and tell him this isn't wnough and you want to go back to where you were reasonably pain-free and then try a reduction in very small steps again - there are reduction plans on here which may work for you and we will explain them but there is no point trying them until you are feeling better.

      It may even mean asking if you can be referred elsewhere if your GP won't take on the job of monitoring you. It would be a help of course if a few more doctors suffered from it themselves - on another forum a former GP now has PMR and realises the mistakes she made for her patients in the past!

  • davidmelville
    davidmelville karen28161

    Posted

    Reading your post and the replies started me off again. Why di I take pain killers (Ibuprophen and Paracetemol) when 2 Mg'smore of Prednisolone would sort the problem out. 

    Why oh oh why are we brainwashed into clawing to achieve reduction and suffer when a little more of the 'awful' Prednisolone would make has nearer pain free.

    i am totally guilty of knowing the answer and totally guilty of still under taking! Why!

    I'm sitting here on the bed about to pop the pain killers when a few hours ago I could have taken more Prednisolone and be free.

    Howmany other suffer thus madness?

    • Nefret
      Nefret davidmelville

      Posted

      David, you've said it yourself - why do you?  There is never any point in forcing reductions for the sake of it, is there?   All the downsides and none of the upsides.

      Also I am now in a position where I need to take strong painkillers for a completely separate condition.  Had I been using these or any other painkillers to supplement Pred for PMR I would now have nowhere to go for effective pain relief.  Pred has no effect on my other conditions and no matter how long you have had PMR, we are all at least a little older than when we started and ageing brings it's own problems. 

      Don't get caught out with nowhere to hide!

    • EileenH
      EileenH Nefret

      Posted

      Exactly the same question asked by a former GP on one of the other forums. She admits she spent her life trying to get patients to reduce pred - and now she has PMR she realises that whether you are on 8 or 9 mg really isn't so significant in the great scheme of things except that at 8 you may well be in pain and at 9 you are not.

      Use the dose that works - because if you are on too little you are more immobile and in pain and that is also a recipe for disaster in terms of osteoporosis and depression.

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