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

Pmr and never pain free

Posted , 14 users are following.

Twopies
Twopies

i got pmr in August 2016, started pred that September.  Currently I am going to 6 mg using the dsns method.  But...I am never pain free.  Stiffness and some soreness in thighs, especially in the mornings.  In the afternoons it eases a bit--that's when I do my little bit of walking and housework, etc.  yes, I know that people on this forum lead happy vibrant active lives, and they might be the exception--that's what I want to know:  I would like to hear from others who are not pain free either.  My big question is:  do I keep tapering?  I've gone back up a couple times but those times I was having pain in my hands and feet, and aching in my legs in the night.  Now I'm not having those pains...just stiffness and soreness in my groins and upper legs pretty much all the time, worse in the morning.  Standing for any length of time is very very hard.

you are supposed to strive for how you felt when first put on the higher doses of pred...to be honest, I don't remember, but I know I was completely immobilized by the side effects of the pred--sleeping 3-4 hours, jittery, etc.  I would say I'm doing better overall now.  So....my big question:  anybody else out there never pain free and...do I keep reducing the pred?

1 like, 41 replies

41 Replies

Prev
  • EileenH
    EileenH Twopies

    Posted

    Many people never are totally pain-free. The degree of freedom from pain you achieved with your starting dose is your reference point. You are reducing looking for the lowest dose that gives you that. It shouldn't be too difficult to remember because at each dose you should be reviewing: do I still feel as good as I did at the last dose. If you don't, you go back to the last dose, wait a bit and try again. What you are looking for is INCREASING pain - as long as it stays stable and is manageable that is OK. If it starts to increase after a reduction then it isn't OK. Stop, go back, reassess and see what happens.

    If you have groin pain and upper leg pain it could be due to low back problems, spasmed muscles for example, which are irritating the nearby nerves and causing referred pain into the upper legs. That could be myofascial pain syndrome or piriformis syndrome. Or the groin pain could be trochanteric bursitis - which will also cause pain down the outer aspect of your thighs, especially tender if you try to lie on your side. I've had both at various times both originally at the start of PMR and since with flares. I have physiotherapy for the back muscle problems and have had intramuscular cortisone shots for the bursitis - not into the joint, that isn't necessary. All the things I have mentioned are found more often in people with PMR.

    If the mornings are a problem, maybe you need to try taking your pred earlier in the morning - lots of people take it very early and settle down for another couple of hours by which time it is working. Or possibly at night so it is already working by the morning or even splitting it, taking 2/3 at one time and the rest at another so the effect is lasting overnight and giving you a better start to the day. Everyone is different and what works for one person may not work for another. 

    It isn't a race and it isn't a head over heels tumble to the lowest dose possible. It is a compromise between feeling as well as you can and the dose. Obviously staying at 15mg isn't realistic even if you did feel great there but once you are at 8mg or so 1mg here or there isn't particularly bad. The Matteson paper shows that longer periods at these sort of doses isn't the end of the world. It took me over 4 years to get to under 9mg - you are doing pretty well.

    It is probably worth asking your doctor about those options - because it depends on what sort of pain and where and only a physical examination will identify that. 

  • Anhaga
    Anhaga Twopies

    Posted

    I don't get the impression that many of the followers of this forum lead happy vibrant active lives.  I think getting one out of three of those descriptions would be me on a good day!

    • Twopies
      Twopies Anhaga

      Posted

      Me too...and...when I get below 7 mg, I blubber—a lot. Over my dead pets, dead parents, heck, even a commercial on tv.  Seems to have to do with cortisol levels? Very annoying, to say the least.  Been blubbering a lot this morning.  But I will perk up later today... 😋

  • judy93591
    judy93591 Twopies

    Posted

    Well, it is somewhat consoling to at least know we are not alone on this journey non of us planned, or asked for ! 😏

    • EileenH
      EileenH judy93591

      Posted

      Some 10 years or so ago the NE of England PMRGCA charity produced a DVD about what PMR and GCA do to us as an aid to explaining to family and friends what is going on. It was called "You are not alone"

      The charity came about because 5 women "met" here, this is the first and original PMRGCA support forum, realised there was nothing else to provide information for patients and doctors weren't very good at it. So they got together and the rest is, as they say, history.

  • christophe38948
    christophe38948 Twopies

    Posted

    Hi,

    NO me either not Pain Free. These are the steroid's side effects. We can take medication according the doctors suggestions and pray?!

    Good Luck

    CW

  • jean39702
    jean39702 Twopies

    Posted

    Twopies, I started on 40 mg almost four years ago and was only pain free for the first two weeks. Docs had me drop too far too fast. Even though I went back up to 40 mg for a month I never got my legs back. I call them my cement noodles. Basically heavy and weak all the time. I'm currently at 10 mg and have had three flares, the last one in July this year, which I got under control quickly with a minor increase in prednisone.

    I get debilitating groin and hip pain on occasion, but have decided this isn't PMR pain for me. More like the trochanteric bursitis or myofascial pain that Eileen speaks of from time to time.

    I've also discovered that a lot of my morning stiffness is not PMR, but rather normal aging issues. I confirmed this recently when I stopped taking 8 hour Tylenol (acetaminophen) muscle and joint pain before going to bed for a few nights.

    Over the years I've pretty much determined that the pain of a flare for me rears up in my neck, upper back, and triceps.

    We're all so different in how this illness affects us, how we react to prednisone, etc. it's an individual puzzle and somehow we have to figure out how the pieces fit together. Every one of our puzzles is unique.

  • carolyn44300
    carolyn44300 Twopies

    Posted

    I also was diagnosed August 2016.  I am now down to 4 mg Pred and, like you, never free from some discomfort. I would rather suffer that than the Pred side effects which were pretty awful. I suppose I have just made myself adjust to the physical constraints of PMR and constantly hope that eventually it will fade away - before I do preferably! I have better days and bad days but thankfully on some better days I can do a little gentle gardening or walking. 

    About reducing, its up to you. I made a conscious decision to get myself off Pred- both my doctor and rheumatologist agree that it is the way forward. I see the rheumatologist again in April when I shall have been off Pred for a couple of months. It remains to be seen whether I have any or all of the symptoms still by then. The rheumatologist tells me my symptoms are indicative of Pred withdrawal and that I haven’t got PMR any more. I am sceptical about this but am prepared to wait and see. I’ve had all the tests for other conditions so I guess she feels confident in her diagnosis.

    • Anhaga
      Anhaga carolyn44300

      Posted

      As pred withdrawal and PMR are virtually identical I don't know how your rheumatologist can be so sure.  You will know if PMR really has gone, and I hope it has, if when you are completely off pred there is no increase in whatever discomfort you feel.

    • Twopies
      Twopies carolyn44300

      Posted

      How interesting, Carolyn...please keep me posted as to your progress!  I would be where you are with the dosage but have gone up a couple times because I felt the pain returning--aching in my hands and feet, and aching in my legs that interfered with sleeping.  These symptoms improved right away when I went back up,

      When i I tried to reduce to 4 from 4 1/2, the fatigue was so debilitating, I could barely function so I went back up to 6 1/2--probably too big a jump but I didn't want to risk a flare.  This time whenever I get to 4, I'm hoping that by using the dsns method and staying at each juncture for 30 days that I will do better energy wise.  I don't have a lot of energy right now, but it's not debilitating.  Pred seems to give me every side effect ever listed so like you, I'm so hoping that one of these days I will recover from its effects.  Best wishes to you!

    • jean39702
      jean39702 Twopies

      Posted

      I am by no means an expert, however, my major worry is the affect of on-going inflammation on my body.  It can do some nasty things. Fortunately, ESR and CRP have been good markers for me throughout my journey. They were through the roof on diagnosis. I have the levels checked quarterly and have identified that at a level of 10 (our lab maximum) is pointing me to a flare. If my symptoms warrant I increase prednisone slightly (1 or 2 mg) for a short time to get things under control,  I simply will not allow the inflammation to build and get into a full blown flare requiring a more significant increase.
    • Twopies
      Twopies jean39702

      Posted

      10? Your lab maximum?  If your esr is more than 10, you increase pred? Or do you mean crp? I’ve never had elevated crp; last esr was 11 so I thought that was ok...So did doc...? Thanks!
    • jean39702
      jean39702 Twopies

      Posted

      Every lab has their own "normal range" for inflammation markers.. I'm referring to CRP , which I understand is a more reliable marker than ESR.  In my case a lab reading of <10 is OK, i.e.within normal range, However, once I reach or pass 10 it pretty much shows my PMR is more active .

      An ESR reading of up to 20 is fine at my lab.

    • Twopies
      Twopies jean39702

      Posted

      Thank you for your prompt response—that was my understanding, too.  Although my crp was never elevated, not even at the onset.  My last esr was 11, I believe...pre-diagnosis it was something like 58.  On higher beginning dose pred it was down to 1; seems to be hovering around 10-11 now which my doc thinks is ok.
    • lilian05079
      lilian05079 Twopies

      Posted

      Hi Twopies

      I went through every side effect preds could throw at me.....11 months on after coming off preds every side effect is gone...but i have been left with cataracts which my opthalmologist tells me are not naturally occurring because they were brought on by preds so i do not need an op to remove them but keeping an eye on them ....excuse the pun! but you can rest assured once you are off the preds you will go through withdrawals and perhaps what i had pred bone pain...but you will come out the other end free of preds and their awful side effects..i recall blubbering like you at things i wouldn't blubber about now, but the preds effects on your adrenals and cortisol make you so highly emotional. This will pass after about 3-6 months off preds....you will get there just keep going... hang on to the time when you will be back to you again!.....it is a bumpy road but you will get there...my very best wishes to you Twopies....keep positive and take one day at a time.....

    • EileenH
      EileenH Twopies

      Posted

      Twopies: that fatigue at 4mg was unlikely to be the PMR - it was your adrenal function lagging behind the reduction in pred dose and you are quite correct - going back to 6 1/2mg was probably too far if you had been oK at 4 1/2mg.

      The accepted range for CRP can be up to 1 or up to 10 - depending on the units the lab uses there is a factor of 10 difference so  you need to know what your lab uses and it is always given in brackets after the result. The ESR is a simple figure and always less than 20 (used to be adjusted up for age, that is no longer accepted as correct) - the distance the red blood cells settle in an hour in a vertical tube full of whole blood.

    • EileenH
      EileenH carolyn44300

      Posted

      I'd be pretty sceptical too - she can't know, there is no way of knowing except the state you are in after stopping pred. 

      "both my doctor and rheumatologist agree that it is the way forward" - when doctors say that I have to question why they bothered putting you on pred in the first place. 

Back to top
Prev

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.