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And I thought I would do better.

Posted , 10 users are following.

tavidu
tavidu

Hi all, haven't been on for a while as we have had a few small problems unrelated to PMR etc. Over the past 9 months I have tried to reduce preds from a high of 25mg and am currently at 13.5mg (now 3 weeks since my drop from 14mg). The itching etc that I was getting every 4 to 6 weeks has stopped completely which is great, but once I dropped below 15mg the aches in my upper arms and lower legs have increased significantly and I am now scared to drop any further. I wouldn't say that it was painful but I now find it difficult to raise my arms above my head and I find walking makes me much more tired. I have been dropping by 0.5 per month for the past 3 months and was ok at 15mg althought I had the odd ache here and there, so can anyone advise if this is normal or should I simply stay at 13.5mg for a few months and see how things go

I have had PMR for a year now and had hoped to be down to around 10mg by now but that dream has gone by the wayside now. Your feedback would be appreciated. (PS Have a good holiday Eileen).

2 likes, 7 replies

7 Replies

  • Mrs.Mac-Canada
    Mrs.Mac-Canada tavidu

    Posted

    Hi Tavidu,

    I wonder if your recent "problems" have set you back a bit.  I wouldn't reduce, even using the DSNS method, if I still had symptoms.  Maybe going back to where you were comfortable might be worth a thought.  None of us like taking pred but the real goal is to get to a dose that manages our symptoms. Gotta keep that little PMR guy happy and hope he/she gets bored with us and goes away sooner than later.

    hope your feeling better soon.

    Diana🌸

     

    • tavidu
      tavidu Mrs.Mac-Canada

      Posted

      Hi Diana, thanks for your advice. We went away in our little caravan last week for a few days and the day we left I forgot to take my morning 13.5mg of preds, by 6PM I was in agony so up'd my dose to 15mg for 3 days and felt slightly better so perhaps it is time to consider upping to 15mg. Good luck and best wishes Dave (tavidu)
  • ptolemy
    ptolemy tavidu

    Posted

    The aim of the pred is to make your life bearable, if it is not you should increase until it is. You need to get to a situation where you are happy. You have had quite a reduction in nine months. We all want to reduce as quickly as possible, but it really pays off to take it slowly. The pred will not help the tiredness, but if you are in pain with the PMR it could make the fatigue worse. Go back to 15mg for a while and see if things improve. Then slowly reduce when they do. 
    • tavidu
      tavidu ptolemy

      Posted

      Thanks ptolemy, as you and Mrs Mac say I think its time to give 15mg a try for a month to see if things improve, thanks for your advice.
  • tina-uk_cwall
    tina-uk_cwall tavidu

    Posted

    Tavidu, I think you are being far too hard on yourself. I have had diagnosed and therefore treated PMR for one and a half years and have only just reached 8mgs. Personally I would up my preds to the last dose whereby I was comfortable, I think in your case, 15mgs and stay there for a good 6 weeks then attempt again to reduce by .5 to 14.5mgs. 

    I've had 1 flare and believe me it takes longer to get flares under control than it did to get the original PMR under control with the first dose.

    i saw my rheumatologist 3 weeks ago for my 6 monthly check up. He was over the moon with my progress and reiterated that slowly slowly gets us there in the end. You've come on in leaps and bounds please don't ruin things simply because you're not where you had hoped to be this point in your recovery journey. All the best, christina 

    • tavidu
      tavidu tina-uk_cwall

      Posted

      Dear Christina and Mrs O. Many thanks for your advice and support, what would we do without eachother on this forum. I have decided to do what you both, and a majority of other fellow sufferers have suggested and up my dose to 15mg for a month or two and hopefully things will settle down and I can start to reduce by 0.5mg a month.

      Thank you to all that have been kind enough to advise me, what would I do without your support, regards Dave (tavidu)

  • MrsO-UK_Surrey
    MrsO-UK_Surrey tavidu

    Posted

    Dave, with the symptoms you describe, your present dose is obviously not keeping on top of the inflammation, so, unfortunately,  I think you need to increase back to where you felt comfortable, whether that be 15 or 14mg.  Flares can be quite common in the first 12-18 months of treatment, so better to get on top of the inflammation now rather than let it completely take over and risk you having to go right back to 25mg to get control again.

    Have you perhaps been overdoing things recently, such as manoeuvring the caravan, that might have upset things?  It is really important not to overwork those muscles as they can be very easily injured whilst battling PMR.  Are you also taking special care to rest and clear the decks for a week or so around every reduction to give your body every chance to adapt to the new dose?  

    Perhaps, as well as raising the dose, you can get your GP to refer you to a good physio who understands PMR and will use some gentle massage and heat treatment on the problem areas to give you some relief.

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