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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

216 Replies

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  • karren61208
    karren61208 Emis_Moderator

    Posted

    Wow! I am super thankful about this new thread and must say this forum has given me a huge boost of energy.

    My goal is to join Club Zero. You give me a new window of hope that I can find the way.

  • bmd0491
    bmd0491 Emis_Moderator

    Posted

    Thank you, Emis

    .i didn't see your added link somI can find Zero Prednisone Discussion.

    can you post it, please

    • Emis_Moderator
      Emis_Moderator bmd0491

      Posted

      I've added the link to the pinned discussion in my initial post. This is the list of resources etc that is at the top of the PMR group page. As I have commented elsewhere, if any user has any suggestions for that pinned list of resources send me a Private Message with details.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey Emis_Moderator

    Posted

    Very many thanks for setting this up, Alan - several people have mentioned to me recently that they would like to hear from those patients like myself who have recovered from both PMR and GCA and steroids as it gives them hope when they are struggling.

    Many years ago now, when diagnosed and alone with something I'd never heard of, I contacted a lady who had produced an article in a magazine about her journey with PMR and GCA, and she suggested I looked at this site.  I never looked back, and in spite of having been in remission and off treatment for three years now, I want to remain loyal to a resource that helped me in the hope that I might be able to help others from my experience.

    So big thanks are due to you especially, Alan.

    MrsO

     

  • Danrower
    Danrower Emis_Moderator

    Posted

    My Prednisone Poem

    I want to be in club zero.

    I am an addict. 

    I criticized addictive behavior before the pmr.

    Now I know.

    I took my first dose, and was hooked.

    A love-hate substance.

    I would do what it would take to get it.

    My, how perspective changes.

    • karren61208
      karren61208 Danrower

      Posted

      Dear Dan,

      It is amazing how perspectives change and overnight. I am a swing dancer--Lindy Hop, jitterbug, west coast and a few others like a touch of Balboa on a good day or DC Hand dancing. 

      I am also a publishing poet but I know your poem is not up for critique just for subject matter comment. 

      How long have you been on the pred med? Me only since mid June and a low dose -- 15 mg and now as of this week 12.5. I am back to feeling good and getting my energy back. after 7-8 months of going down hill, I'm thankful for that dangerous drug.

    • Danrower
      Danrower karren61208

      Posted

      Dear  Karren,

      A dancer. To fall from a higher cliff surely will injure more than a hod carrier like me. I like to think that I was 10 feet tall, and bulletproof, but, no.

      And poetry: less words, more meaning. Wrote another about pmr:

      https://patient.info/forums/discuss/my-dream-403134

      would welcome any critique. Hardly claim to be a poet.

      Been on pred for 1 year 4 months, started @ 15 mg, down to 4.5 mg/day. Better, but still feel it.

      I had recovered from undiagnosed PMR 12 years ago. I lasted 1 year.

      Notice how we all say we are "getting" energy or better. we're all working on it.

      Regards,

      Dan

    • karren61208
      karren61208 Danrower

      Posted

      Goodness, Dan, are you saying you only lasted one year without the prednisone?  Have you tried EileenH's slow method of weaning off the pred meds? 

      I'm going to back channel you on the poetry so that we can stay on topic which by the way is exactly what your poem does.

  • pebbles01
    pebbles01 Emis_Moderator

    Posted

    WOW! Thank you so much for all this information. It was a god send to find our exisiting forum, I would be lost without it, but I have to say all this information and charity that is available for us sufferers is amazing. I will be in touch with the charity and buying some items of information and also the Pred booklet.
    • jacqui35798
      jacqui35798 pebbles01

      Posted

      I wish there were a forum as well in the US, but it is funny that you all are from the UK, and my entire ancestry is the British Isles, all inclusive.

      I will purchase the book and DVD.

  • cindy63197
    cindy63197 Emis_Moderator

    Posted

    Thanks. I am excited to say that I am almost there! After 17 months on Pred I am down to 1 mg daily. I feel pretty normal except that I occasionally overdo because I feel normal, and the next day I need to take a long nap. I am not quite as strong as I used to be. From what I read on this forum, I have had a better time of things than many.
  • Emis_Moderator
    Emis_Moderator

    Posted

    I have deleted a couple of comments as they are discussing specific diets in detail and/or recommending products, books etc which we do not allow in the forums. If users wish to discuss specific diets (without product placement) can I ask that you please start a new discussion on this rather than fill this discussion with full diets etc.

    If anyone has had a post deleted that they have not got a copy of send me a Private Message and I can retrieve the text. If you want to recommend specific books etc not allowed here use the private message service to discuss or to pass details on if other users want these.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    Regards,

    Alan

  • RD_Swede
    RD_Swede Emis_Moderator

    Posted

    Hi!  I am Ragnar from Sweden and I am probably one of the "oldest" - not in age maybe (soon 78) but years since Zero Pred. I finished in December 2008 and I haven´t had any flare and my 3 ½ years with Pred were easier than for most of you. I didn´t have any bad pain. I had pmr as well as GCA. You can find my history in the contributors short stories on this forum.

    My hardest time was when I had fatigue while tapering - see my story. When I came to 5 mg I found out a method that worked for me from 5 mg and to 0, and I have seen on some boards that other persons have tried it with success and sometimes made modifications to drag it our even longer than I had to do. It was named Ragnar´s method by those on the Northeast forum. Eileen modified the method to make the tapering much slower as everybody cannot taper as fast as I did and it seems as if most people on this board take the extended taper that Eileen published. 

    On the Northeast forum I took the initiative to start Club Zero in April 2012. The editor split up the Club Zero questions in two parts. One is just for the members - no other persons should post. The other is where the members put questions to the members of Club Zero. In that way there is no discussion when the members only part is used. The advantage is that it is easier to follow the advice from the members of Club Zero without mixing with new questions coming up.

    As I am going to the USA on Sunday on a two weeks visit, I may not be able to answer possible questions for some time.

    At last - my advice is to take it easy when tapering. A tapering with .5 mg from 10 mg is recommended and the closer to 0, the more important it is to go sloooow. At small dosages there shouldn´t be any hurry as the side effects are very, very small.

    Good luck

    • Emis_Moderator
      Emis_Moderator RD_Swede

      Posted

      Hi Ragnar/all,

      The brief histories discussion is no longer pinned so I've put the link to your story on the NE site below assuming this is the correct one.

      http://www.pmr-gca-northeast.org.uk/stories.php?id=12

      Due to the way these forums are set up we cannot split as you say NE has done as we do not have private members groups. If it is felt this is not the best way to go with this discussion/idea I could create a completely new group called Polymyalgia Rheumatica and GCA - Club Zero for individual discussions/questions but not sure if this would cause "splintering" or overlap/repetition. I am open to any suggestions from users about the best way to go and it is easily achieved from my end.

      Regards,

      Alan 

    • RD_Swede
      RD_Swede Emis_Moderator

      Posted

      Yes, It is the right link. I understand what you mean and I think that you did the right thing when you moved away some posts that were "off subject".

      Regards,

      Ragnar

    • lodgerUK_NE
      lodgerUK_NE RD_Swede

      Posted

      Due to Ragnar, who took the time out to visit the North East and speak to our members, both Eileen and myself devised slightly different plans.

      These are free to anyone who cares to email the North East and send an email with the subject heading 'Reduction Plans'.  They both work and are currently being looked at by researchers into both PMR & GCA.

      I met Ragnar on the Canadian ship - he was Captain.

       

    • lodgerUK_NE
      lodgerUK_NE Emis_Moderator

      Posted

      Alan

      With a bit of luck and a fair wind, it will work out the way you have set it up.

      Patient have always been innovative and occasionally got it slightly wrong and then corrected it.  It is well run and moderated.

      I, personnally, would love to hug those two Tyneside Medics.

      I would ask for one thing  - an edit button on postings pretty please.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Emis_Moderator

      Posted

      Alan, I voted for this way back in February - I suppose it would be 'illegal' for me to do it again!!!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey RD_Swede

      Posted

      Ho Ragnar, I believe I was one of the first to read your success story on reducing below 5mg some years ago now.  What you wrote made such a whole lot of sense to me that I started the slowly slowly tapering approach immediately after readig it.  I decided to do it far more slowly than you after returning from 10mg back to 5mg after a severe flare.  But the speed didn't matter - all that mattered was that by reducing in just 0.5 decrements tapering over a period of 7 weeks got me to zero Pred safely and smoothly over 3 years ago.  You know I have thanked you so many times in the past but it can't be said too often, so a big thank you again, Ragnar.  Have a lovely time in the US.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Emis_Moderator

      Posted

      Alan, I feel it should work well in the format you have set up, but agree that it's right to remove posts that veer away from the reason it was set up, ie for patients going through PMR/GCA to be able to read that they too will reach remission and zero steroids in the future.
    • RD_Swede
      RD_Swede MrsO-UK_Surrey

      Posted

      I am glad that the method helped and it is very nice that Eileen developed it further to help even more.
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