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Posted , 15 users are following.

janice85211
janice85211

Hi ?

I was diagnosed in February 2014 and started on 15mg Prednisolone. I have been up and down with the dosage, got to 4mg in December but felt rotten so am now back up to 10mg ...still feel rotten and take the odd Naproxen which helps a lot. Am waiting for blood results next week. I reduced by alternating daily 10/9mg one month ...9mg one month then 9/8mg next month...8mg one month etc

Has anyone else tried this or do you think the Zero Prednisone method would work with Prednisolone as well ??

1 like, 32 replies

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  • EileenH
    EileenH janice85211

    Posted

    If Naproxen "helps a lot" - I really would query whether it is really PMR you have. Almost no-one finds NSAIDs help do more than possibly take the edge of their pain. And in that context - that may be the reason you are struggling to reduce. What are your symptoms? Do you have back pain? Is it worse at night and improve with movement once you get up?

    There is no difference between prednisone and prednisolone in terms of reduction: prednisone is the precursor to prednisolone and must be processed by the liver to form prednisolone before it is active. That is all.

    Not sure what you mean by the "Zero prednisone method".

  • Diana112
    Diana112 janice85211

    Posted

    Hi Janice, I personally think the Dead Slow (DSNS) method which has been used by many is perhaps a steadier approach as it gives your body a chance to adjust to the reduced dose over a number of days.  Although your approach is simpler, the end result is that you are moving from 10mg to 9mg in one jump.
  • Michdonn
    Michdonn janice85211

    Posted

    janice, you don't feel well? PMR stiffness and pain? I do not taper if I have PMR pain. I also try to stay active, I think this is very important. I taper using the DSNS method and do not rush, it is not a RACE! My Rheumy does not understand, but that is okay.

    I only use Prednisone, but do take turmeric daily. Good luck hope you feel better. Think positive and try to smile. 🙂

  • liz76821
    liz76821 janice85211

    Posted

    Hi Janice. So sorry to hear you are not where you'd like to be! Sounds a similar scenario to my own. I came down to quickly before Christmas, so had to up my dose to 13mg. Now, like you I am alternating my dose 12/13, with a view to being on 12 from 1st February for that month, then from 1st March being on 12/11 alternate days, so then on 11mg for the month of March, and so on. Hope you start to feel better soon. I had high hopes of getting off steroids asap, but it's not as easy as we think; feel disheartened when folk tell me they've been on steroids for years! Keep your chin up and keep taking the tablets!! Good luck.

    • EileenH
      EileenH liz76821

      Posted

      You aren't aiming to get OFF pred. You are aiming to find the lowest dose that provides the same result as your starting dose did. That isn't the same thing at all. This is a chronic disease, it lasts on average more like 5 or 6 years, not the 2 years many doctors are silly enough to prognosticate. A recent study on the effects of pred in PMR patients found that 6 years was a common duration - and slowly rheumies are learning the truth we patients have been saying for years! 

      There is no point being disheartened at the prospect of being on pred for years - you wouldn't expect to get off insulin for diabetes would you? PMR and pred is one better than that: only 5% of us remain on pred for life, 75% of us get off pred in under 6 years!

    • liz76821
      liz76821 EileenH

      Posted

      Eileen, thank you for your honesty. My GP has told me virtually nothing, other than give me this diagnosis, give me a brief printout from her computer and prescribe steroids which she said I should decrease asap. Have been feeling I am on my own completely. I have joined a local support group, but am still trying to learn about PMR. I appreciate your advice and need to come to a happy place of acceptance. Thank you.
    • Michdonn
      Michdonn EileenH

      Posted

      It would be great EileenH, if only the Rheumies would get on board. Plus avocate the DSNS method of tapering. Still thinking positive and smiling. 🙂

    • EileenH
      EileenH liz76821

      Posted

      Is the group one of the PMRGCAUK ones?

      If you haven't already found it, go here:

      https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

      where you will see a link to our resources post - the NE support group site has a lot of realistic info and their membership pack has even more. Their DVD is called "You are not alone".

      And no - DON'T decrease asap - decrease sensibly, perhaps as decribed in the Dead Slow and Nearly Stop approach, and you won't overshoot the dose you are looking for because if you do that you will cause a flare and end up taking far longer. If you are at 15mg, you stay there for 4 to 6 weeks until your symptoms are as good as they are going to get. That is your guide going forward: if the pain starts to increase again after a reduction you have probably gone too far. Go back to the last dose, wait a few weeks and try again. You may be fine going to 12.5 for a month and then to 10mg. From 10mg you need to reduce 1mg at a time or you WILL overshoot.

      If you don't understand something - ask.

    • EileenH
      EileenH Michdonn

      Posted

      I've been told that there is a rheumy in the US somewhere who has something very closely resembling the DSNS reduction protocol on his website. There ARE doctors who understand the value of slow reduction in any use of pred - and particularly in PMR. Few and far between - but there are a few.

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, I wish I could point my Rheumy in that direction. Tomorrow another appointment with her. She will be advocating another drug, I just want to taper down on Pred. Thinking positive with a smile.🙂 You have to smile!

    • EileenH
      EileenH Michdonn

      Posted

      What are you down to now Mich? I thought it was about 11mg?? By that stage there is no point at all adding in anything else until you get stuck again (and probably not even then). With the best will in the world, at 80 you aren't going to be on high dose pred for 20 years are you?? rolleyes wink

  • janice85211
    janice85211

    Posted

    Hi EileenH and everyone !

    My symptoms are equal sided pain or ache in my knees, upper arms, shoulders, neck and hips, the latter eases of about mid morning.

    taking the edge off is probably better to say rather than helps a lot.

    Knowing that 5/6 years is normal rather than the 2years the Doctor says puts my mind at rest and I will now insist I come off preds more slowly.

    I should have said Dead Slow method of reduction rather than zero.

    Is anyone taking the once a week calcium tablet, I was put off by the side effects I read people have had.

    thank you agin, it is great to be able to talk to someone ! 

    • Diana112
      Diana112 janice85211

      Posted

      Hi Janice,  I guess you mean the once a week Alendronic Acid ?   Like you I decided to give it a miss in view of the possible unwelcome effects.  It seems the guidelines are to prescribe it regardless but in almost 4 years I have had no problems that I am aware of.  I do take the daily Vit D and Calcium and hope that will suffice.
    • EileenH
      EileenH janice85211

      Posted

      I have never taken alendronic acid (apart from 4 tablets right at the start). I then had a dexascan and agreed with a GP there was no need yet. In over 7 years of taking pred at PMR level doses, though a few years at well above 10mg, my bone density had barely changed and remains mildly osteopeneic. I have always taken my calcium and vit D though - that is important as is appropriate exercise - walking is enough!

      The symptoms wearing off is after you have taken pred I assume?

    • EileenH
      EileenH Diana112

      Posted

      The guidelines are to do a dexascan FIRST! Only in over 65s do they suggest AA is required without - but since several ladies I know in their 70s and 80s have perfectly good bone density - age is immaterial! But everyone DOES need a dexascan, whatever age they are, young or older.
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