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Another recently diagnosed

Posted , 9 users are following.

Silver49
Silver49

RealiseI have had this for a long time but symptoms were not classic so was not picked up until a relative with medical background suggested I have full blood test. Could not fault my GP as his response was to the blood results was immediate. Started on 20mg prednisolone for 10 days, 15mg for 4 weeks and 12.5mg for 2 weeks.Since reducing to 12.5 some of my symptoms have returned and I have continued on12.5 beyond the 2 weeks.I had a particularly busy week last week and have also been dizzy again. This week is quieter but next week is to be a busy one! I find travelling any distance beyond 30 minutes in the car leaves me in pain and my right leg goes from under me! Any advice would be most welcome, please.

1 like, 18 replies

18 Replies

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  • lodgerUK_NE
    lodgerUK_NE Silver49

    Posted

    http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 go to this thread to the pinned section on this site.

    Read up and follow links given, come back and keep on asking questions.

    Reduction is too fast, and once on 12.5mg, the golden rule is no more than 10% at a time. 

    Are you working@.  Next week is a busy one,  not good at all, you have to learn to pace yourself or you will be back to square one in no time.

    There is a booklet, written by patients for patients called 'Living with PMR & GCA'.

    • GM70
      GM70 lodgerUK_NE

      Posted

      Can you tell me please where I can get that booklet written by patients called Living with PMR and GCA. I am sure this will be useful. I haven't heard anyone mention a booklet before. I think the more informed we are helps us to deal with this dreadful illness. Thanks
    • lodgerUK_NE
      lodgerUK_NE GM70

      Posted

      Visits PMR&GCAuk North East Support website.
  • pauline36422
    pauline36422 Silver49

    Posted

    hi silver i recon  you are reducing   far too quickly and  shold up your dose a couple of milligrams    before   the pmr  gets a real hold  again. yes and  have a look at the  north east site  loads of good infoe on there   best a luck

     

  • tina-uk_cwall
    tina-uk_cwall Silver49

    Posted

    Hi silver, I agree with lodger and Pauline, take your time with reducing. If you are still experiencing the return of your symtoms, up your dose to 15mgs, stay there for 4 weeks then try reducing by only 1mg and then staying on these doses for a good 4 to 6 weeks.  Regards, christina 
  • andrea93419
    andrea93419 Silver49

    Posted

    Hello Silver!!! That is a very quick reduction!!! I have only just got to 12.5mg after starting on 20mg pred 2nd March this year!!! Well I've been on 12.5mg for 4 weeks and will reduce to 10mg in a fortnight as instructed by my rheumatologist. He then tells me I'll be on 10mg for up to 2 months!!!,,, and thats as if everything goes to plan on pain management and CRP readings!!

    Take it easy or you'll undo all the good work so far! Best wishes, Andrea x

    • tina-uk_cwall
      tina-uk_cwall andrea93419

      Posted

      Hi Andrea, my rheumatologist kept me on 10mgs for 6 months before I reduced further. Regards, christina 
    • andrea93419
      andrea93419 tina-uk_cwall

      Posted

      Hi Christina! Yes I think last time I saw my Rheumatologist he was just giving me confidence and hope!!!, Hahahaha! I'm not due to see him next until end of September in which time Id have been on 10mg for 2 months! Then I think he'll say come back in 2 months and remain on 10mg in that time!!!! I wish I could sleep for 2 years until I reach a low dose of this poison!!!! But we all feel like that don't we???? Take care ️xx
    • tina-uk_cwall
      tina-uk_cwall andrea93419

      Posted

      But Andrea, if i slept for the whole time whilst in the high doses I'd miss my husband looking after me like he has never done before in our 34 years together!!! That's how worried he was for me, ah. Regards christina 
    • andrea93419
      andrea93419 tina-uk_cwall

      Posted

      Yes Christina, I keep forgetting life has changed for everyone in this house not just me,,,, and after all they are worried too!! Xx
    • Nefret
      Nefret tina-uk_cwall

      Posted

      Oh, ditto Christina!  In our case it's 50 years later this year!
    • tina-uk_cwall
      tina-uk_cwall Nefret

      Posted

      Oh nefret, that is fantastic!! Bob and me have been together for 34 years but only married for 3 of them. Hell, I would have got less for murder! Regards, christina 
  • Oregonjohn-UK
    Oregonjohn-UK Silver49

    Posted

    Late on parade - am in Cyprus and contending with 34 deg heat.  Glad I did'nt reduce as I had a stressful flight which was also delayed for 2 hours. Once I relaxed after the first day back to normal. 

    Don't let them push you into reducing too quickly, it's already been said 10% and no more, more critical as you get lower.  Slow and sure is the name of the game.

    Best of luck and listen to your own body!!

  • Silver49
    Silver49

    Posted

    Thank you all for your helpful advice.I thought it was too quick a reduction but all new to me. I am retired but my grandchildren are coming back to stay  and I enjoy having them. Hence the busy week. Not sure how to use the reply section when it's to all so hoping this works. Bit of a technophobe.
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