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so frightened of another flare up.

Posted , 7 users are following.

flydog
flydog

In July  I began with pains in my hips which spread down below my knees, 1 week after I got the same pain in my shoulders which spread  below my elbows, I was give pain killers, which did not work, I saw a different GP and she diagnosed PMR, I was prescribed 4 5mg preds for the first week reducing by  one per week, when I got down to 2 I had a severe flare up, I was put back to 3 daily, but I am terrified of another flare up, any advice will be welcomed.

0 likes, 12 replies

12 Replies

  • ptolemy
    ptolemy flydog

    Posted

    Those were big reductions, no wonder you had a flare up at 10mg. Your doctor was probably checking to ensure it was PMR. I think you proved it. What reduction is your GP now recommending?  5mg reduction would be too much in my opinion, as a rule of thumb you should not reduce more than ten per cent at any one time. The normal from 15mg for six weeks is to go to 12.5mg for six weeks. 
    • flydog
      flydog ptolemy

      Posted

       thanks for the advice, I'm an active 73 old, my activies are fly fishing, gardening & walking, all entail shoulders & hips unfortunatly, so I now have to find what I can do without causing another flare up.
    • ptolemy
      ptolemy flydog

      Posted

      I cannot see why you should not continue with your interests. I walk and garden although I have never tried fly fishing! Weight bearing exercise such as walking is a good idea. The important thing is to not overdo things as PMR is very intolerant. If you overdo it, you will suffer the next day.  Rest as much as you can, but exercise is important too. See how you go and just take it slowly. 
  • macas02
    macas02 flydog

    Posted

    the reductions were done too quickly. I was advised by my consultant to reduce slowly, especially when you get to 10mg. After that only 1mg per month.

    I am down to 2mgs a day and  have stayed on that dose for 2 months, I will start reducing this week by taking 2 mgs 1 day and 1 mg the next I do this for a week to get my body used to the lower dose. I have been taken steroids for PMr for 5 years now anad have had a few flare ups, I am hoping this time by reducing slowly I will make it.

    Pmr is so frustrating, so don't rush it be patient.

    Hope this helps, 

    • flydog
      flydog macas02

      Posted

      Thanks for your interest, I have now been refered to a consultant, but I have to find my capabilities without causing another flare up.
  • Susanne_M_UK
    Susanne_M_UK flydog

    Posted

    Do you mean 45mg or 4.5mg? 45mg is not usually prescribed for PMR. Even so, it is a very fast reduction. I would have thought you would have started on about 10-15mg or so.
    • ptolemy
      ptolemy Susanne_M_UK

      Posted

      Mr flydog says four 5 mg tablets ie 20 mg daily for a week then 15mg for a week, then down to 10mg when things went pear shaped.
  • Silver49
    Silver49 flydog

    Posted

    That's a fast reduction. I had a flare up when I went from 15 to 12.5. You didn't even have time to allow the body to have a proper response. No wonder you are terrified. I am only now at 11 and that's since the end of May. There are other more knowledgable people than me who will advise but in my opinion that is far too quick. I think the slow reduction is what you need a link to once someone has given the benefit of their knowledge and experience. Best wishes for a smoother journey on this path. 
  • FlipDover_Aust
    FlipDover_Aust flydog

    Posted

    Welcome to the PMR club - not. You need to do a bit of reading about dosage and reduction - there is no quick fix and not just a case of taking pills for a few weeks and it's all over red rover. There're some links posted on the PMR page that will be incredibly useful - including a reduction plan. Try to find the Bristol paper too.

    As someone said, your GP may just be confirming the diagnosis by dropping the pred to see what happens. You now need a long term drug plan.

    And as you indicated, you will also need to find other things to do while you are dealing with this condition. My whole life has had to change - most people on here will attest that it can be a difficult adjustment.

    • flydog
      flydog FlipDover_Aust

      Posted

      Hi, thanks for replying, I live a very active life and I have to find my level of activety, I will try all the things you have said, and thanks again for the reply
    • FlipDover_Aust
      FlipDover_Aust flydog

      Posted

      Interestingly it appears that most of us here with PMR are the 'active' types.....making it even harder to cope with such a dibilitating condition.
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