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PMR, Prednisone, catching the flare

Posted , 8 users are following.

kathy67492
kathy67492

After 3 weeks at 9m (up from 7-1/2m) I believe I have caught the flare. I had been 12-1/2 weeks at 7-1/2m and was "managing" the pain ok....but, now that I feel so much better at 9m, should I stay at 9 longer before tapering? Are most of you pain-free, or "managing" so that you can be on a lower dose. I am 2-1/2 years into PMR.

Thank you.

0 likes, 23 replies

23 Replies

  • Anhaga
    Anhaga kathy67492

    Posted

    Not pain free but negligible, barely noticeable, and manageable, full range of motion, but feel pred has aged me a great deal. Anxious to continue to get dose lower, currently at 3 and starting slow taper to 2.5.  Fourteen months since diagnosis.
    • tavidu
      tavidu Anhaga

      Posted

      Hi Anhaga. you are so lucky to be down that low after just 14 months and good luck getting off them altogether. I have had PMR for 2.5 years now and fluctuate between 12mg and 15mg and can't get lower than 12 without problems. Currently having a very stressful time with our dog, this is due to her having a cruciate operation that has gone wrong she has a bad infection in the leg, so one of us has to sleep with her to stop her licking it, even with a head ring on she manages to so very little sleep but an awful lot of stress. Good luck.

    • Anhaga
      Anhaga tavidu

      Posted

      Thank you.  I don't actually attribute it to good luck, but to a lot of hard work on my part, although I do have the good fortune to have retired during my undiagnosed year, and do not at the moment have any real stresses in my life.  Other than staring into the abyss....

    • kathy67492
      kathy67492 Anhaga

      Posted

      You have made real progress! I was making good progress I thought, but hit a setback. Best wishes to you as you continue your slo-ow taper😊

    • kathy67492
      kathy67492 tavidu

      Posted

      Oh! I have been there! Our previous dog had a serious injury and we took turns sleeping on a makeshift mattress on the floor with her. The boy pain relief for her was when we held her in a special way in our arms.

      Of course, I did not have PMR then, so I know how that must hurt.

      Must  do everything for our pets...so much joy!  Hope you are all feeling better soon😊

  • tavidu
    tavidu kathy67492

    Posted

    Hi kathy. If I were you and you find 9mg comfortable then I would stick with it for a month or two to settle down, then try reducing again at 0.5mg a month. As it is recommended to drop by 0.5mg once below 10mg there is no point in rushing it only to flare up again and why be in pain when there is no need unless you have other problems affected by the preds. Good luck.
    • kathy67492
      kathy67492 tavidu

      Posted

      Good advice. I was trying a super-slow taper and got in trouble...such a high price...but at least I feel better now.
  • erika59785
    erika59785 kathy67492

    Posted

    Kathy, I am 2 years into PMR and still managing.  I tried to reduce .05 mg from 7 to 6 1/2 mg, and I could not do it.  I will now alternate both dosages for a while......one new and 3 old, and hope that I can gradually reduce this way.   I still need 2 Tylenol daily to reduce the discomfort.
    • kathy67492
      kathy67492 erika59785

      Posted

      I wished the Tylenol worked for me. You too are in that "danger zone"

      dose. Hope you stay steady!

  • snapperblue
    snapperblue kathy67492

    Posted

    Hi, Kathy:  Each of us makes a decision about how to balance the dose of prednisone and the degree of PMR symptoms.  For me, the pain is a sign of inflammation and chronic vascular inflammation is associated with serious problems like heart disease and dementia.  

    My goal not just avoiding pain, but reducing the inflammation in the blood vessel walls. 

    Since I do not have any immediate side effects of prednisone, I take enough prednisone to control the pain completely, assuming that this reduces the inflammation.  Others are more worried about the side effects of prednisone and minimize the dose while keeping the pain at a tolerable level.

    There are pros and cons of each approach. Which is best for you depends on your individual circumstances.  

    • kathy67492
      kathy67492 snapperblue

      Posted

      ...got kicked out...I agree. Eileen warns about the race to zero so I forget about the bad effects of inflammation. I will stay at 9m for a while even though I know I can "manage" at 7-1/2m!

  • EileenH
    EileenH kathy67492

    Posted

    What you are looking for is the same level of "comfort" that you achieved with your starting dose. It may not be pain-free but it should be the best you can get. No-one can tell you what that is - you have to find your level. If the pain level then starts to increase the dose is probably not high enough and the inflammation is not being cleared out. Eventually it will build up far enough to cause a return of your symptoms - a flare. 

    There is no virtue in "managing" on a pred dose that is too low - even half a mg can make a big difference. You should be comfortable and able to function as well as possible.

    • beatrice74480
      beatrice74480 EileenH

      Posted

      Hi Eileen you helped me so much when I was on pred for 3yrs, it has taken willpower and determination to be Pred free for last 2 months, However....... My ESR showing 14 but cant say I am in pain just varying stiffness in Morning for a while in shoulders but not needing painkillers,  I have OstioArthiritis also mostly in hands.I am able to play outdoor Bowls without problem but do get quite tired after trying to walk as I used to, I am 76 tho,There are times when I feel like popping a Pred or two for a week but so far not given in,I now recognise the false energy they give you, Please everyone do follow Eileens Slow reducing Method it really does work. If I do feel a Flare I will get ESR checked and go ont half mg as I truly believe it does help too,My GP has been amazing in letting me decide then consult with him but he said Wonderful when I told him I was not on Pred.Thankyou again Eileen,.. Bea.
    • snapperblue
      snapperblue EileenH

      Posted

      Eileen-  As you said, "There is no virtue in 'managing' on a pred dose that is too low..."

      This is a message that needs to be made explicit more often.  Many people seem to feel that "virtue" is exactly why they take too little prednisone.  This may be because of not wanting feel like a whiner or to meet their doctor's expectations or to feel somehow they are toughing it out.  

      The right dose is the dose that works. There are no awards for struggling along in pain and there may in fact be long term costs. 

    • kathy67492
      kathy67492 EileenH

      Posted

      Cannot clarify those points too often, Eileen....thank you for not getting tired of repeating the same instructions! The prednisone has really made me foggy!
    • Anhaga
      Anhaga EileenH

      Posted

      Here we run into a little semantics.  I was using the word "manage" as a synonym for "organize" or "supervise", rather than it's other meaning of "cope" or "survive".  

      How do others in this thread define it?  

      When I'm "managing" my pred I'm referring to that fine balancing act to get the pred dose down as low as possible without triggering a flare. wink

    • kathy67492
      kathy67492 Anhaga

      Posted

      I guess I think of "managing" in the same way...putting up with a certain amount of pain in order to reduce the prednisone. Testing the limits of the prednisone. I rather like the idea of eliminating almost all of the pain with 1 or 2 more milligrams of prednisone...but then I do not have any obvious side-effects form the prednisone.

    • EileenH
      EileenH Anhaga

      Posted

      "Managing" in that last post was in the context of "I can manage but I don't feel that good" - which was why it was in quotes. I use the word manage in both senses - the context should usually tell you which.

    • Anhaga
      Anhaga kathy67492

      Posted

      Hi Kathy, last night I was thinking I would not try my scheduled taper to 2.5 (very early in the taper I hasten to add).  But this morning I woke up feeling like a new woman and thought I would go ahead after all.  I'm hoping something like 2, no more, will be the inevitable dose I'll have to stay on for a while, and working very slowly down.  Saw an old post of mine from a couple of months ago saying that I was tapering to 3.  Feeling happy, but also have fingers crossed!  cool  

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