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PMR, Prednisone, honest opinion

Posted , 13 users are following.

kathy67492
kathy67492

3 years into PMR, have tapereded only to 7-1/2 at present. Just tried dead slow method to try 7 and have flared after 7 days. First symptom of flare really was increased brain fog. I looked at my detailed calendar which I have kept for the past 3 years and these past months..January, February and going into March are practically identical!!! I was at same dose...for various amounts of time, all reasonable 6-12 weeks approx., and each time I tapered I flared! Had to go back up to 9m at one point. What am I not getting? Tapetinag makes me stupid...even when I take notes and issue reminders to myself on my iPad! Is it possible to be in this PMR/prednisone cycle forever?

0 likes, 31 replies

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  • karen81902
    karen81902 kathy67492

    Posted

    Please tell me what is happening to you when you get a flare.  Very painful or just achy?  I just can't tell.   Does anybody have neck pain?  I am very achy today. Getting in bed.  I do have brainfog at times. Probably more than not.

    • Daniel1143
      Daniel1143 karen81902

      Posted

      Karen, inflammation has migrated all over my body over the past two years and fas found its way to my neck.
  • 1951grumpa
    1951grumpa kathy67492

    Posted

    I've flared many times. Have had PMR for 5+ years. The lowest mg you were at and didn't flare is how much prednisone needed to keep the PMR inflammation at bay. I don't think there's a set time when PMR goes away. I think that with most people it resolves in a couple years. But some of us are "lucky" enough to be on prednisone for over five years, it's somewhere in the 20/30% range for lasting >5yrs. I've come to the realization that there's nothing I can do to speed up the process. The prednisone keeps the inflammation at bay. I'm down to 5mg and have flared twice since May trying to reduce. Have been at 5 for a while. I see my rheumatologist next week. I hope the best for you.

    • kathy67492
      kathy67492 1951grumpa

      Posted

      Sounds pretty similar to my experience. It gets confusing when you are trying to taper, knowing the PMR is still there and needs the same amount of prednisone. I have had several "experiences" of feeling better...less pain, no fatigue, etc., but it is always lurking. Thank you...good luck on your continuing taper😊

  • nick67069
    nick67069 kathy67492

    Posted

    Kathy, you do realize that you are at the level when your body has to produce cortisol to supplement every reduction in prednisone. Our body needs 5-8mg for normal daily function. Adrenal glands produce cortisol in healthy body. After years of using prednisone, those glands went into hibernation and need to be awaken.  There is a test that can be performed to find out if your adrenal glands can produce cortisol or not. I cant remember the name of the test, but you can ask your doctor for it. If you glands cannot produce cortisol, or cannot produce enough of it, then unfortunately you would have to be on prednisone for the rest of your life.
    • kathy67492
      kathy67492 nick67069

      Posted

      I will ask my rheumatologist for that test because I cannot get below 7-1/2m and I intuitively feel that my adrenals are not working!
    • EileenH
      EileenH kathy67492

      Posted

      However, knowing that your adrenals CAN produce cortisol doesn't mean that they are doing so! It depends on a whole load of other things.

      The vast majority of patients do regain adrenal function if they reduce slowly enough though. If youa reon 7.5mg at the moment then no, your adrenal glands very probably AREN'T working. You have to go a bit lower to prod them into waking up and doing their job.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada kathy67492

      Posted

      Hi Kathy,

      i was told by an my Endro doctor that they don't do that test until you've been off pred for at least a month because any results would be affected by the pred in your system.  Other doctors may have different ideas but thought I'd mention it.  I had a couple of tests to check cortisol levels and they were totally different because of the time of testing and amount of cortisol produced by the pred.

      I'm into my 4th year of PMR and am now beginning my decrease to 3.5mg. I had to decrease more slowly than the DSNS method and also, once I got to a full week at the lower dose I stayed there for between 2 and 4 weeks or even months depending on what my body told me.  

      If you always flare during  January, February and March maybe you should avoid trying to decrease during those months.

      Hope you find the right dose for you to be comfortable and can then slowly, slowly begin your decrease when the time is right.

      Diana🌸

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      It can be done once you are down to about 5mg - and some doctors will do it at higher doses. They have to be experienced enough to interpret the skewed results though and few are. The test only shows if your adrenals a CAPABLE of producing cortisol - not whether they actually are. 

      I have to say - I find it a bit scary that doctors claim they have to wait until you are off pred to work out whether your adrenals are going to be able to function! You could get pretty poorly in the meantime!!!!

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      This is why I go by what you say oh wise one😉.  

      Will email soon🌸

    • kathy67492
      kathy67492 Mrs.Mac-Canada

      Posted

      Thank you....never considered certain months being a contributing factor, but with the holidays just before it is reasonable...I always struggle thru the holidays, so then enter January on the "downside".

  • barbara73592
    barbara73592 kathy67492

    Posted

    Hi Kathy,

    Like  you I am stuck at 7 1/2. I tapered down to 7 and had to go back up the half again. 

    I have successfully tapered from 30 mg from when my PMR started a year ago.

    I have gone very slowly to this point and was quite pleased with myself until now. Of course I was never entirely pain free but it was sufferable. I am going to try going down again in a few weeks with the help of Paracetomol. It has never gone back to the very sore symptoms of when I was first diagnosed,thank goodness but I am generally stiff first thing. Tops of legs,shoulder ache,neck ache are my main problems.

    I do know that when we are tapering that it can seem like a flare,but after a few days at the lower dose the body does seem to get used to the lower dose. This is what I found until now. I think some of us may get to a point where we cannot taper any lower,but we have to keep trying to see where that point is.

    Regards,

    Barbara

    • EileenH
      EileenH barbara73592

      Posted

      You may already know this - but I always post so it is in context.

      First read my other post replying to kathy.

      If you have reached the lowest dose that will manage the inflammation produced by the underlying autoimmune disorder then trying to force a reduction using paracetamol will only lead to a full blown flare. That was the reason the Dead Slow and Nearly Stop approach was developed - showing your body the new lower dose just one day at a time at first allows your body to get used to the idea slowly and you are far less likely to have the days of discomfort as you reduce. By reducing the chance of steroid withdrawal effects you are better able to see if the return of pain is because of going too low. 

      The stiffness first thing is normal if you don't take the pred very early. A study showed that the optimum time to take pred to avoid that is 2am - the pred is at its highest level in the blood just as the inflammatory substances are shed in the body so they never get to cause trouble. Many take their pred early and settle down for another couple of hours before getting up - by which time the pred is starting to work.

    • barbara73592
      barbara73592 EileenH

      Posted

      Hi Eileen,

      Thanks for your comments. Re the paracetamol,I only take it spasmodically,not all the time but I welcome your input re the whole condition, Its so heartening to hear from other sufferers and their experiences. I am probably still a novice having just reached a year with the condition.

      Barbara

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