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How often does your PMR come back

Posted , 10 users are following.

alan769008
alan769008

I've been great for over 3 months since I was diagnosed in April not a problem at all but the last week I've had 2 bad nights/days where it's comes back with a lot of pain and stiffness. Once my Pred kicks in after about 3 hours it eases. Starting to feel depresed again as it's getting me down coming back not been able to do things without the pain

Alan 

0 likes, 10 replies

10 Replies

  • Nefret
    Nefret alan769008

    Posted

    It doesn't 'come back' at all, it's always there but in the main managed by steroids.  You don't give details of the dose you are on, or if you are following a reduction plan?  There are ways to manage the steroid doses to help with this problem.  Do give us a bit more information.

    • alan769008
      alan769008 Nefret

      Posted

      Hi thanks.

      Started on 20mg in later April and I'm currently on 12.5mg after dropping from15mg in mid July. Unitl last week no problems at all but now getting the pain back. I'm back to see the doctors very soon

    • FlipDover_Aust
      FlipDover_Aust alan769008

      Posted

      I'd go back up to 15mg and stay there for a month before trying to reduce again.... and then by only 1mg every month. Have you heard of the 'dead slow, nearly stop' (DSNS) method that a  lot of us use quite successfully to reduce the pred dose?

  • jeanne333
    jeanne333 alan769008

    Posted

    Just relax and enjoy the ride, you are now taking a ride on the PMR rollycoaster. You have to have a sense of humor and need to listen to what your body tells you. Yes it is talking to you, when you have more pain and stiffness, you either overdid or your prednisone dose isn't high enough. It is all trial and error, and each case is different. This site is very helpful, you will get lots of insight and good advice, from its members.

  • dan38655
    dan38655 alan769008

    Posted

    Given that you have had PMR for only four or five months, your current dosage is probably a bit on the low side.

    That's how I managed my dosage, albeit with a good bit of discomfort that not only fluctuated in intensity but that moved to many different structures of my sleleton, one at a time.

    I'm only 138lbs, since I quickly lost 15lbs with the onset of pmr about 2.8 years ago. I didn't gain any of the weight back, though I am leading a very athletic life at 56 years old and at a current dosage of only 4mg with stable symptoms at this point.

    The various temporary symptoms (2 months to 1.5 years) included thumb joints, palms of feet, hips, shoulders and ribs. Also some skin issues, a tickling in my ears at times, ear-ache on the side that I slept on plus a few other smaller things.  I never perceived any significant symptoms from the prednisone itself, and thus adjusted my dosage AS NEEDED, with subsequent approval of this practice from my rheumatologist.

    You can expect your dosage requirement to fluctuate a bit, randomly, but if you under-medicate for to long your symptoms may "flare" in intensity for a good length of time (while needing a higher dosage).

    • paul45653
      paul45653 dan38655

      Posted

      Thanks for very pertinent input. I have been sitting on this dilemma for several months in which my mobility and pain level have suffered. I was diagnosed two years ago last May on the basis of sed rate and reaction to pred.The Osteo arthritis in lower spine makes an easy skapegoat for my GP and Rheumy so they can ignore the effect of incorrect dosage of pred. 

      I am at 5mg and was supposed to be at 4,5 by now but decided to figure out my situation before going any lower. In the past two months my quadraceps, knees, hips and back have played up to the extent that I am in pain just walking. I used to play tennis 3 or 4 times a week, but It hurts too much and is a drag on any partner as I can't get to the ball. I know my age plays a large part as I will be 86 in November, but it not stopped me until lately. I had tried going to 10mg for a couple days but could not see any great improvement like when first diagnosed and given large dose.

      I tapered back to 5mg in a week. I'm not satisfied that my PMR is under control and I would like a way to prove it, or not. I see my Ruemy tomorrow and have not settled on what I am going to ask or say. I would like to try the big dose again, but how big should it be? And for how long before establishing a result? Your input will be greatly appreciated.

    • Anhaga
      Anhaga paul45653

      Posted

      Increasing a dose when PMR pain builds up - the usual recommendation is to return to the place where you last felt well and see if staying there for a few days does the trick.  If not people do increase more, I believe.  I haven't had to do that as the only time I needed to increase was by 1 mg and it worked.  The secret is to taper very very slowly, much more slowly than most doctors want you to.  Do you know about the dead slow nearly stop method?  I showed that to my doctor after I had reduced from 15 to 10 and she approved.  It took me about 9 months to reduce to 3, but both she and I are happy with that, and I am feeling well enough to consider an attempt to go to 2.5 this week.

      https://patient.info/forums/discuss/reaching-lowest-dose-of-prednisone-196749

    • dan38655
      dan38655 paul45653

      Posted

      All of my adjustments to dosage have been just a couple of mg, as needed to reel in any worsening in my condition.

      I had stabilized at 3mg for a while and then dropped to 2mg which was a big mistake.  That was 4.5 months ago and am needing 4mg to his day trying to keep my symptoms tolerable.  I'm doing well this month and may try for a small reduction in a few weeks, but as others have mentioned, one needs to get the inflammation fully under control before trying a lower dosage.

      I do better when I avoid any heavy restaurant food such as burritos and chips and the like.

  • maurice1962
    maurice1962 alan769008

    Posted

    Hi alan ive just stuffed up in the last 24 hrs ive taken 4mgs instead of 20mgs and im pretty much in pain all over👎👎. Maybe i should put my glasses on next time 👀👀👀😂😂😂😂😂🤓🤓🤓
  • Sheilamac_Fife
    Sheilamac_Fife alan769008

    Posted

    Hello Alan! Unfortunately Prednisolone does not cure PMR, it simply damps down the inflammation and consequently, the pain, enabling us to function until the illness goes into remission. This can take from 2-5 years or more. We have to gradually reduce the dose by small increments at a time, ideally not more than 10% until we reach the lowest dose that keeps the pain at bay. It sounds as though you have reduced too quickly.
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