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Tapering dose

Posted , 10 users are following.

Mousemum
Mousemum

Hi Im 67 and have PMR and GCA. I have been on prednisolone for 4 years which seems unbelievable. Has anyone else experienced this. I have reduced my doses very slowly by 1/2 at a time as per Mrs O or Eileen Im sorry I cant remember which. I am now down to 5mg but am really struggling to get it down any further. Any advice please. Thanks Carol

0 likes, 12 replies

12 Replies

  • tavidu
    tavidu Mousemum

    Posted

    Hiya Mousemum. You would assume that your body is telling you that it cannot cope with less than 5mg of preds a day therefore if you are feeling ok at 5mg stick with it for a while. Give your body time to function again on its own with 5mg or even go up if you have to for a more comfortable life. 5mg is low so give it time.
  • Nefret
    Nefret Mousemum

    Posted

    4 years? Do not worry, I have racked up 15 years and I know I am not the only one around here.

    If you are struggling on 5mg, I think the general suggestion would be to go back to where you were last comfortable and stay there till it is stabilised. If you are not taking enough Pred then you have no benefits from it at all - but do suffer the discomforts.  5/7.5mg is a tiny amount and there should not be any side effects at that dose - it is about the amount of cortisol that you would make naturally, so you are asking your adrenals to wake up and do their bit and they don't always want to.

    The slow reduction is good and you will be able to continue it once you are comfortable.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada Mousemum

    Posted

    Hi Carol,

    I've been on pred for 3 1/2 years and am also at 5mg.  At one point I was at 4mg but when I tried to reduce (very slowly) to 3 1/2 I had a major flare. Quite a surpise to me!!  I think it was probably because my adrenals hadn't had time to catch up.   I am now comfortable at 5mg and have been at this dose for 3 months. I plan on staying at 5mg for another 3 months and then, depending on how I'm feeling, I'll try a very, very slow reduction 1/4mg at a time.   

    I recently changed from taking the prednisone between 2:00am and 3:00am when cortisol levels are at their lowest and production picks up to 8:00 am when they are at their highest level.  My thought is that this might encourage the adrenal glands to work at producing cortisol in the early morning because there isn't as much pred (cortisol) in my system.  I've discussed this with Eileen and my rhuemy and both said it was worth a try. I am more stiff when I get up but it only lasts an hour or so.  I do notice that I am more fatigued but my rhuemy said that it's because the adrenals aren't used to the change yet and to give it a couple of months.  

    I was assured that at 5mg and less the pred really doesn't cause too many problelms so you may need to be patient.  If this disorder does nothing else it teaches you patience.

    Take care and enjoy what you can. 

    Hugs,  Diana 

    • rrobinson75
      rrobinson75 Mrs.Mac-Canada

      Posted

      When you had your major flair, how much did you increase your prednisone dose and for how long before you started reducing again?  I am having a major flair and had to go back up to 10 mg but I am still not having great relief.  So frustrating!
    • Sheilamac_Fife
      Sheilamac_Fife rrobinson75

      Posted

      If you have increased to 10mg and you still have pain, you need a higher dose. Did you start on 10 or 15mg? You might need a higher dose than your starting one.  It might not be for long but you need to take sufficient Prednisolone to stop the flare and get rid of the inflammation. Then you need to stay there for a week or two at least to ensure it is settled. Then you can test the waters by coming down by no more than 10%. Hope this helps

       

    • Mousemum
      Mousemum Mrs.Mac-Canada

      Posted

      Thanks Mrs Mac I stayed at 5mg for 2months and very slowly went down to 41/1, I also suffer from Temoral Artritis (GCA) and found I was getting bad headaches and especially around left eye so had to go up again. Frustrating because shoulders and hips are fine. Oh well will get there wont we.

       

  • Elijo
    Elijo Mousemum

    Posted

    Hi Moussemum, I started on 40mg. last Nov., finally tapered to 3.5 and began feeling the old symptoms returning, so inceased to 5, but may go to 6.  I have to be able to function. When getting down to real low doses, I decreased by 1/2 every 2 weeks  I wasn't tolerating 3.5 very well   It's  difficult when you get down to the low doses  and like Nefret said I guess the adrenals haven't awakened yet!  Yes, listen to your body and take what you need.  Good luck, Elinor

  • snapperblue
    snapperblue Mousemum

    Posted

    Are your symptoms relieved at 5 mg, so that you function well and are comfortable?

    If not, reducing would not be expected to work very well.

    If so, what happens when you reduce the dose?  

    I understand your discontent that you are still on prednisone after 4 years but that is within the normal duration of PMR.  I agree with Tavidu and Nefret that staying on this low dose is not going to cause you problems.  It would be if nice reducing the dose slowly and methodically always meant you could eliminate prednisone in the end but, sadly, PMR does not play by that rule.

  • Mousemum
    Mousemum

    Posted

    Thanks veveryone. Was a bit discouraged cos my gp said I would only be on them a cpl years. After listening to your advice I will stay on the 5mg dose for 6 months and then try again. t was only when I tried to go down to 41/2 that I flared up. Thanks for a ll your replies and good luck to you all. xx
    • Anhaga
      Anhaga Mousemum

      Posted

      One thing I've tried, and it works for me, is (using the dead slow nearly stop method) I take the lower dose, wait a week, try again, and if I'm not sure I do not shorten the interval between lower doses, I wait the full week again.  I had to do this at 7 mg, and again I think it was around 5.  Both times it was the third time that I felt well enough to launch the taper, and both times the taper was successful  So you may not need to stay at 5 for as long as six months.  This is a reasonably harmless way of kicking the PMR beast and seeing if it's sleepy enough to carry on with a taper or whether to hold back for  while.  Another tweak to the DSNS method is to double the time, so you do each drop twice before moving down again, and at lower doses by .5 mg.  So often the pain we feel on reducing really is pred withdrawal as much as or more than PMR itself so anything we can do to avoid pred withdrawal, the better.

      My doctor also told me at the very beginning that she has patients who keep a supply of 1 mg tablets on hand just in case, after they are weaned off, they feel a return of symptoms.  When she told me this I was quite sure I'd never need that prop, but a year on in this journey I'm not so sure!  rolleyes

    • Sheilamac_Fife
      Sheilamac_Fife Anhaga

      Posted

      Super advice Anhaga! I was about to suggest the same thing.... I am currently trying again... to come down from 5.5 to 5mg and although I've used the wonderful DSNS method up to now,  I am giving myself one new dose every Sunday and 5.5 On all the other days. Trying this for 4 weeks, hoping my body doesn't spot the trick!...

      My main problem is not pain but outrageous fatigue and believe that my adrenals are not ready to play yet. My neck felt a wee bit 'crunchy' last week, so I guess a flare could have been lurking too.

      i know this is a small dose and they say side effects should be insignificant but I was hoping the weight would be falling off by now. Hmmm

    • Anhaga
      Anhaga Sheilamac_Fife

      Posted

      I know what you mean.  I do think that this slow taper gives the adrenal glands a chance to start working.  It seems important, somehow, to serve them notice, which is why we have to keep carefully attempting small reductions.  Gentle nudges....
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