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PMR, Prednisone dose

Posted , 9 users are following.

kathy67492
kathy67492

I have had PMR for 3+ years, started @15m for one week, then 10m, then trying to continue the tapering. I did not know about the DSNS method of tapering for the first year. Since then I have tapered as low as 7m (briefly!).

stress, over-activity, have causes quite a few flares.

Question: is this normal to be so long into this and still be at 8m?

I feel "better" than I did a year ago, but the amount of prednisone had not really decreased.

0 likes, 25 replies

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  • EileenH
    EileenH kathy67492

    Posted

    It took me about 4 years to get to much under 10mg, I got stuck at 9mg. After a massive flare nearly 5 years ago I did get down to 5mg, 4mg briefly, but had another flare. Now I have just got back to 6mg.

    I also have myofascial pain syndrome - and I'm fairly sure it is that that stops me getting below any given dose I get stuck at. Sort that out and I am able to reduce another mg or two. 

    It all depends on the current activity of the underlying autoimmune disorder - you need what you need to manage that. Force it, you have a flare and go higher to manage it which adds to the time it takes to get back where you were. Using the DSNS approach those flares are much less likely - but far more to the point, you don't go back to such a high dose time and again.

    But a good half of patients need pred for up to 4 to 6 years. Being at 8mg after 3 years doesn't seem too bad. There are a lot of factors at play - maybe you are someone who is only absorbing 50% of the pred you take? You can't be compared with the patient who absorbs 90%. Both of you may NEED the effect of 4mg - you would have to take 8mg, they get away with taking about 5mg. 

    • kathy67492
      kathy67492 EileenH

      Posted

      Interesting that you mention the myofascial pain. I don't have that (as yet!), but I do have feet issues which I relate to PMR/prednisone. My body needs the 8m of prednisone right now...I do not seem to recognize any side effects at this time. Next month I will talk to my rheumatoid once again about Actemra, which may or may not be available to me. I do not like what I read about these biological drugs, particularly because the prednisone seems to be working so effectively and there are also serious risks associated with the Actemra. Why switch medications?

      I have never considered the absorption of the prednisone...but I do typically require a higher dose of medication than the average bear.

      Very logical idea. Thank you so much!

  • walter98524
    walter98524 kathy67492

    Posted

    IWAS ON PRED 10MG. FOR 2YRS. TAPERED DOWN TO 8 THEN 5 THEN 1MG EVERY MO. TILL NO MORE. I FEEL FINE NOW 1 YEAR LATER.  PRED IS NOT GOOD FOR YOU ON A LONG HAUL. TRY AND DO AWAY WITH IT FOR GOOD
    • EileenH
      EileenH walter98524

      Posted

      It worked for you - but men often experience PMR and pred in a totally different way from women.

      But what NEVER ceases to amaze me is how the proponents of "doing away with pred" assume those of us who take it are doing so for fun, for no good reason other than just taking it. It doesn't matter whether it is the medically qualiifed or the patient who is no longer on pred and somehow thinks they have done better. 

      Walk in MY shoes and then YOU may tell ME I shouldn't be taking pred. Or anyone else taking pred on the forum if it comes to that.

    • paulszak
      paulszak walter98524

      Posted

      Walter: I have had PMR for only 2 months and my Rheumy has

      me tapering to 10 next month. What was your taper like to

      where you are now and did you use DSNS tapering?

      Paul

    • Nefret
      Nefret walter98524

      Posted

      I guess that I'm on it just for the hell of it, then.  Do you really believe that if I could have reduced to zero in 2 years I wouldn't have? 

    • paulszak
      paulszak walter98524

      Posted

      Thanks for your reply to kathy. You answered my question about pred tapering.

      I also found an answer to the DSNS taper method I asked in one of the posts.

      Think I will talk my Rheumy in to the taper method or I will get a new Dr.

      ThanksPaul

    • Anhaga
      Anhaga paulszak

      Posted

      Advice is to reduce by no more than 10% at a time, and stay at new dose, whether using DSNS method or another, long enough to make sure it is effective before reducing further.  In my experience the lower the dose, the slower the taper needs to be, and the longer one should remain at each new level.  At lower doses the good thing is that any side effects are also much reduced or absent.
  • barbara73592
    barbara73592 kathy67492

    Posted

    Hi Kathy,

    I understand only too well where you are coming from. I got down to 7.5 was congratulating myself ,then whoops,a flare!  I had been tapering had to go back to 10mg (that was when I was last good) I stabilised at that for a fortnight,then cut down to 9mg where I was good too. Now at 8mg and not so good,so am going to go back to 9mg for a bit. I saw my Rhuematologist last week. He is a young man and very good.

    He told me when tapering to after a flare stay on the last dose I was good at for 6weeks,then drop by only a half mg for another 6weeks. He said the slow method is best for quality of life. He also said that too many patients try to reduce too quickly as they hate being on the drug .

    So different from my first rheumatologist who anther me off pred altogether within 6months! Eileen's advice nod experience as usual is spot on and I really want to try the dsns method but haven't got there yet,

    I understand that we are all different and what suits one will not suit another,so it's trial and error,but without the pred we would all be in a sorry state even though we don't like being on it

    Barbara

    • EileenH
      EileenH barbara73592

      Posted

      Monklands then I assume? Do you belong to PMRGCA SCotland?
    • barbara73592
      barbara73592 EileenH

      Posted

      Yes Monklands Hospital. I was originally sent to Hairmyers for diagnosis and that was where I saw the first Rheumatologist. He expected me to go from 30mg to nil in 6months. He then (thank goodness) referred me to Monklands for my 6monthly follow up .and I got the doctor I am now seeing.

      yes I am a member of PMRGCA Scotland . I must say I find these forums extremely informative and helpful.

      Barbara

    • EileenH
      EileenH barbara73592

      Posted

      It is nice to know where there is a good rheumy for people who end up with ones like your first guy. Where on earth do they get the idea PMR is gone in 6 months?
    • kathy67492
      kathy67492 barbara73592

      Posted

      Good to hear from someone else with a similar problem😊 I do admit that I blame all brain fog on the prednisone...so, when I forget the tapering rules I am immediately punished and have to start over.  It is always such a setback. The DSNS method is the best chance to taper!

      Thank you.

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