1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

22.5!

Posted , 12 users are following.

LisaCACO
LisaCACO

so exciting to be at this amount. I know it sounds like a lot to many of you, but I started at 60mg, had to move to 80mg, then back to 60. I am quite excited to be at this "low" dose.  

doc suggested jumping to 20, but I decided to take a more cautious approach and do 22.5 first. she's always in a hurry wink. If this doesn't cause much of a fuss, then in a couple of weeks I might move down. I know my body and it will fuss pretty quickly if it's not happy. 

anyway, I'm celebrating reaching this level. been a few days and so far so good (knock on wood). I even had two teeny weeny sips of wine (about a tablespoon) last night, my first in a year. yes, I know how to party :D.

1 like, 16 replies

16 Replies

Next
  • EileenH
    EileenH LisaCACO

    Posted

    Brilliant! All you need now is to train that doctor that the tortoise won the race - not the hare!
  • tina-uk_cwall
    tina-uk_cwall LisaCACO

    Posted

    Hi lisa, horray!! Easy on the alcohol though, I don't want to hear you've been staggering down the road singing out of key at the top of your voice. It's a slippery slope!!!! All the best, christina 
    • karren61208
      karren61208 tina-uk_cwall

      Posted

      Hurray for Lisa and a toast to her continuing success.

      Can anyone tell me why drinking alcohol has such an immediate bad effect on the PMR sufferer? For me, it goes straight to my legs. I have never been much of drinker but I know what is good and am sad to pass up excellent wines and champagnes.

    • EileenH
      EileenH karren61208

      Posted

      It may just be because you are drinking less so it seems like more effect. It doesn't bother my PMR but I have become much pickier!

      Pred is said to mimic aging - and aging does alter the way alcohol affects us. Maybe it is that?

  • sue-dorset
    sue-dorset LisaCACO

    Posted

    Hi,

    totally agree with Eileen. My tortoise is now on 4mgs and plodding along nicely thank you! Good luck.

  • Susanne_M_UK
    Susanne_M_UK LisaCACO

    Posted

    Fantastic news! You are now on a much more manageable dose.

    I've just reduced to 18mg today. I'm currently doing a 10% drop every 2 weeks and am doing ok. I think my rheumy is finally beginning to see it my way!

    Since being diagnosed with GCA end of last year, I had never been able to get below 22.5, having had a couple of flares.

    Again, I'm so pleased for you. :-)

    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Hello Susanne, it's all good news today. I wish you all the best too. Regards, christina 
  • lodgerUK_NE
    lodgerUK_NE LisaCACO

    Posted

    Don't worry about the wine, I just stuck with Brandy and became known as the Brandy Queen.

    Yup, all the way from 60mg, two flares, 5 years and then Club Zero and still in remission nearly 4 years down the line.

    However, I did go slowly and I mean slowly.  Reduction Plans,  Dead, Slow and Stop and Tortoise and Hare devised by patients for patients.

    Visit the pinned section if you want free copies.

     

    • LayneTX
      LayneTX lodgerUK_NE

      Posted

      How do you see " pinned" info? Is it for patients only? 
    • EileenH
      EileenH LayneTX

      Posted

      No - it's a thread that stays at the top of the list of topics even though no-one has posted on it recently so you can always find it easily and it doesn't get lost amongst the 60-odd pages this forum comprises!

      If you follow this link

      https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

      and look at the page further down where is says "Discussions in this group" you will see the top 2 threads say "pinned" against them, the rest don't.

  • margaret22251
    margaret22251 LisaCACO

    Posted

    On holiday last week i managed 2 glasses of rosa every day, hiccup! and could not believe how i got away with it, but no more now i am home.cry Mags
  • Susanne_M_UK
    Susanne_M_UK LisaCACO

    Posted

    There are so many restrictions on my life, and I'm not going to give up on a glass or two of wine occasionally!
  • pat38625
    pat38625 LisaCACO

    Posted

    Well done Lisa, a reduction is great no matter what the dosage is.  Continued success.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.