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Zero Prednisone Discussion

Posted , 53 users are following.

Emis_Moderator
Emis_Moderator

At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred. I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.

11 likes, 216 replies

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  • margo25238
    margo25238 Emis_Moderator

    Posted

    Thanks to all - this post feel lmost appropriate for me as i am tapering 1mg per month.(from 30mgs to 6mgms)  I am not sure how to determine a 'flare' vs everyday aches and pains on my way to to Zero Club...love that name!

     

  • allykat
    allykat Emis_Moderator

    Posted

    I am a newbie only having been diagnosed with GCA 15 weeks ago. I have successfully reduced from  50 mg to 12 mg as of this past Tuesday. Do I gather this is where it could get a little tricky? While my ultimate goal it to join Club Zero, I don't want to have any flares. I am going to Canada in 7 weeks time for a month's visit and hope to reduce to 10 before going or is this "pie in the sky"? 
    • lodgerUK_NE
      lodgerUK_NE allykat

      Posted

      allykat,

      You can ask questions here but there are other threads and the very first post on this thread pinned and posted by the moderator gives a whole load of information.

      In the meantime, I am surprised that in 15 weeks you have managed to get dwon from 50mg to 12mg, it took me 6 months to get to 20mg and then I had a  flare and back up to 40mg, then a slow progress down to 20mg and another flare, so back up to 40mg, quickly down to 20 and then steady as she goes.

      If you are going to Canada in 7 weeks time, I would advise you to stay where you are and don't rock the boat.   Also ensure you have enough pred to combat any problems when travelling.  Also have you advised your insurance company of you new illness, you will need cover and it could go up - your Bank or Saga can be tried if you find your normal insurance people hike it too far.

      Good Luck and I really mean that.

    • allykat
      allykat lodgerUK_NE

      Posted

      Good Morning lodgerUK and thanks for your kind words.

      Yes both my GP and I are amazed and delighted at how well I have responded to the meds. Even the weight gain and moon face have not appeared. I don't think I have any secret remedy except to say that I have been very diligent about sticking to a low carbohydrate diet (especially with respect to sugars) and not over eating even though I don't feel full. We actually discussed this at my last visit and although my GCA was missed by my first doctor's visit (someone else, not my current GP), it turned out that my GCA was probably caught very early (and I might add it was by me searching the internet) so pehaps that helped.

      I sorted my insurance a few weeks ago without any problems.

      Next visit with my GP is in two weeks and as you say I am tempted to stay at 12 mg just to be on the safe side.

      Thanks again

    • lodgerUK_NE
      lodgerUK_NE allykat

      Posted

      allykat,

      Mine was diagnosed within 5 days.  It just goes to show we are all different and that is not surprising.  Do what you are tempted to do - stick with 12mg, Enjoy your visit.

    • EileenH
      EileenH allykat

      Posted

      Definitely stick where you are for the trip - and make sure you have plenty of extra pred with you just in case. There is no point risking what you have achieved for the sake of a mg or two of pred. 
  • BettyE
    BettyE Emis_Moderator

    Posted

    I have not contributed lately but this thread made me feel I should still contribute even after being off Prednisolone since October 2013.

    Briefly my "history" is that I had two episodes of PMR. the first lasted 3 years and the second, which began after five years symptomless, lasted for just over five years. It was not plain sailing but I did eventually get to zero and am now feeling pretty well ok for 83. Won't write too much on this post but happy to contribute if my experience can be of use to anyone. I'll just say that I did not progress to my present condition in a smooth curve.

    Please, Moderator, how do I update my email address? Old Virgin one still working alongside BT but maybe won't go on for ever.

    • lodgerUK_NE
      lodgerUK_NE BettyE

      Posted

      Yippee, another person who has come through PMR twice. I have never heard of anyone having it three times. 

      It is so lovely when people tell others it can take a long walk off a short pier and hopefully drown.

      If you click on My Account, you can alter all your details.

      Top of the page, in the green bit on the top right hand side.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey BettyE

      Posted

      Betty, a great morale boost for those wndering if they will ever kick PMR into touch to hear from someone who has beaten it not once but twice.  Stay well.
    • tina-uk_cwall
      tina-uk_cwall BettyE

      Posted

      Hello Betty, I think your entire story would be very interesting and encouraging for us all. As lodger says some of us will have this condition more than once and how those patients coped with it would be among others things educational.

      i am 54 and have PMR since September 2013, diagnosed December 2013, down to 8mgs after a flare. I hope I am one of the lucky ones that eventually joins the zero club. But because of my age I've often wondered how many more times it could return?

      please tell us your story, there will be many of us would would love to hear it. All best wishes, christina 

    • karren61208
      karren61208 BettyE

      Posted

      Hello Betty,

      I have only been in the forum a week. I was just diagnosed with PMR in the last 6 weeks after having symptoms for 7-8 months that  stymied the lineup of doctors I saw. 

      Your story and all the others here in this active forum has given me so much help and hope. Please tell your story. Thank you!

    • lodgerUK_NE
      lodgerUK_NE BettyE

      Posted

      Write  your story and I will print it for wider distribution.

       

    • BettyE
      BettyE lodgerUK_NE

      Posted

      Thank you, Lodger. Have now changed my email address.

      Will write my story in the very near future. It will be familiar to those who visit the NE forum but I know there are many here who do not.

    • lodgerUK_NE
      lodgerUK_NE BettyE

      Posted

      Brilliant and will be in touch with update.

      xxxxxxxxx

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