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Over doing it when the sun shines .e

Posted , 8 users are following.

carol16456
carol16456

We have had a lovely few sunny days here ,so I thought I woul get stuck in and help my husband alter our garden to make life easier for us as we get older or as him 'always in the garden would hope ' that it would make the house more salable .

i Now understand what you mean by a flare up ,because I cut my dose of qqsteroids over a week ago and have past the withdrawal stage . Now do I stay longer at 11.5 mg ,perhaps another week or go back up to 12mg again .feel like I am giving up .What I have found that works for me is to drop .5 mg for 1 week then the second half for a fortnight .

I haven't felt as bad as this for a few months .Its back in my neck shoulders and arms .Both hands are swollen in knuckles .What would anyone else do ? And for how long ? Advice please .Made my self take our Nell for a walk for an hour which although cold out did do me good .But now of to take some pain killers and a cup of tea 

1 like, 11 replies

11 Replies

  • pat38625
    pat38625 carol16456

    Posted

    Hi Carol, ock deary me, sorry to hear you are not feeling the best.  I am relatively new here, well I was diagnosed with PMR in November past and was put on 20mg of pred but am now down to 15mg and am hoping to reduce to 12.5 mg 4th April.  What I found works for me and I am only learning this, is that it takes my body 2 to 3 weeks to adjust to the reduction.  So far I haven't had a flare.

    Do you have any Arnica gel, it is very good for bruises also arithtic type of pain, it takes the edge off it and some people swear by it.  I remember enjoying the absence of pain and I thought I was great and did too much.  But I paid for it.  Not necessarily a flare up but the weakness and dizzyness just knocked me out.

    Dome of the more experienced people on the forum will be able to help you, they have loads of experience and advice and support.  Good luck Carol.  Regards Pat

    • carol16456
      carol16456 pat38625

      Posted

      Thanks Pat ,I must have started this journey the same time as you.But I was started at 15 mg ,but although not been clear of dicomefort when I over doit. this time reminds me what it was like when I was eventually diagnosed .at least th sun is still shining here
    • pat38625
      pat38625 carol16456

      Posted

      Carol, only for this website and the people on it I really don't know where I would be.  I have yet to see a Rheumy and there is a 6 month waiting list for urgent appointments.  But due to the good people here I have learned so much, so take everyones advice, support and information.  I was diagnosed 12th November but had been ill from June/July.  So good luck.  Pat
    • margaret22251
      margaret22251 carol16456

      Posted

      hello carol, just like you and pat i went on holiday thinking i was ok, found you cannot do what you could, we thought nothing of walking from 4 to 8 miles a day, BUT even a mile was too much and i caused myself misery as well as the grump.

      so i have learned take each day as it comes

  • EileenH
    EileenH carol16456

    Posted

    Sorry - but you cannot do the gardening you used to when you have PMR. Your muscles are intolerant of exercise: they won't warn you when you are doing too much like they used to and they will take longer to recover. 

    I'd certainly go back to the previous dose - it isn't giving in, it is being realistic. You might even find you need a bit more for a few days. You should be able to go back to the 12mg quickly though.

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    And I'll bang on about it again: in the 4th and 5th posts of the thread this link takes you to you will find a very slow reduction which avoids even the withdrawal pain you still get with 1/2mg steps. We used to suggest going this slowly for lower doses - more recently it has been used at higher doses and people have far fewer problems with reductions at any level as a result.

    And REST now! A warm shower may help - I hesitate to recommend a bath as I wouldn't dare have one! And arnica may help the sore bits.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey carol16456

    Posted

    Oh dear, Carol, we all do it.....and then we learn!  If you felt comfortable at 12mg then don't hesitate to return there again and stay there for a couple of weeks before thinking about reducing.  It's very frustrating I know, but the more you do, the more difficult it will be to reduce those steroids, therefore taking longer to recover.  I hope the cuppa and the painkillers do the trick along with Pat's good idea re the arnica. 
    • carol16456
      carol16456 MrsO-UK_Surrey

      Posted

      Hope you are doing well Mrs O ,didn't know about Arnica cream until Pat  mentioned it .Will get some Monday .
  • Oregonjohn-UK
    Oregonjohn-UK carol16456

    Posted

    I have recently dropped from 9 to 8 BUT I did it very slowly which took four weeks to complete.  Dropped 1 mg one day the first week, two the second and so on until finally on the lower dose every day..
    • carol16456
      carol16456 Oregonjohn-UK

      Posted

      I found that .5mg drop for one week then the other half the next 2weeks work quite well ,but was due to drop the 2nd half tomorrow .However  the following week we stay with friends so do not want to go lower then.I will go back to twelve for a few days and start another drop middle of next week and stay at that until we come home .Just feel I have let myself down .But don't suppose it will be the first time or the last 
  • julian.
    julian. carol16456

    Posted

    it seems a bit like snakes and ladders.

    Being swallowed by a snake is quick. Overdo the gardening or any effort is like being swallowed by a snake. And the effects linger.

    Climbing a ladder is a slow tedious incremental journey. One step at a time. Reduce the dose, see what happens. Do some gardening, see what happens. Do a bit more gardening.

    Just a case of working out how much gardening, or anything else, I can do and pacing myself accordingly. Even if only an hour or so and a couple of hours rest. Or even a couple of days. Different things so I'm using different muscles in different ways.

    Finding the balance between the preds, the pain, and activity is simply managing the problem. If it needs more preds for a while then so be it. Nothing to do with giving up. Even though it feels like it.

    What seems important to me is that the metaphorical ladder can be climbed. And if a snake comes along and swallows me there's another ladder nearby. Not looking for the ladder would be "giving up".

    • carol16456
      carol16456 julian.

      Posted

      You ere so very right ,just wonder who throws the dice .Thankyou all for your support 
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