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Light at the end of the tunnel . . . Reaching low dose Pred.

Posted , 9 users are following.

Juno-Irl-Dub
Juno-Irl-Dub

Hi. Just to cheer up all of you who are struggling, very slowly, to reduce your Pred. and even wondering if it's worth it all.  It is. Two years ago I started on 20mg. and have been reducing since using Eileen's method. It worked really well for me and am now at the 3.5 to 3.0 stage. I don't know if I'll be successful in stopping completely - in my head I've always felt that 2.5 was a really nice dose to be at (daft, I know) for another year - but we'll see.

I just want to outline the improvements I've noticed now that I've reached a low dose:

1) Hair -  has improved, much less thin.

2) Eyes - wavey, blurry episodes have stopped

3) Skin - improved, much less paper-thin looking

4) Depression - early morning for 2 hours has stopped

5) Fatigue - much less tired

6) Peeing - no getting up at nights now

7) ' Pred. brain' almost gone ( just old age now) 

So please see - it'l be worth it in the end. I feel that, even if the PMR returns later on (much later, hopefully), I'll be so much better able to manage it, thanks to Eileen and the other experts (you know who you are) who have been my education and support and were invaluable. Thank you all.

Keep up the hard work. J

.

So please see - it'll be worth it in the end. I feel that, even if the PMR returns later on (much later, hoopefully), I'll be so much better able to manaage it, thanks to Eileen and the other experts (you know who you are)

who for me were invaluable. 

Keep up the hard work.  J

6 likes, 16 replies

16 Replies

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  • tina-uk_cwall
    tina-uk_cwall Juno-Irl-Dub

    Posted

    Hello Juno, I will reply to your pm tomorrow because I'm worried my battery will pack up halfway through my message! But yes, I'm hoping for all those improvements too although lucky me I've never suffered much from many pmr/pred side effects.

    i also wonder flares aside that is on average how many times this pmr returns to us, if at all.have a good evening, regards, tina

    • Juno-Irl-Dub
      Juno-Irl-Dub tina-uk_cwall

      Posted

      tina, take your time. You're supposed to be resting . . . . You don't HAVE to do anything these days . . . .  T
  • Anhaga
    Anhaga Juno-Irl-Dub

    Posted

    Somewhere on this site is a thread about reducing to zero although I don't know how one would find it - I can't remember how I stumbled on it.  But it would be great if you find it and can post your experience.  It might be on that page with all the links which I must remember to bookmark because I still have no idea how to find it unless someone posts the link.  Really encouraging to hear of a positive outcome, even though you are just shy of the zero club.  Thank you!
  • EileenH
    EileenH Juno-Irl-Dub

    Posted

    Fingers crossed - but with my sensible head on I have to agree with you it isn't necessarily zero you're aiming for. 

    Tina - a few people get it twice but 3 times is felt to be REALLY bad luck. Trying to force it to zero is a good way of picking up a second chance to try it out...

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Thanks for that clarification Eileen. Like Juno I am following your dead slow and almost stop reduction method and I'm now down to 7mgs and taking things easier still until I have recovered from this blasted broken heel and PE's regards, tina
    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      HI Eileen, Just noticed that my last paragraph reappeared. It vanished (?) and I had to try and remember what I'd just typed and re-do it . . .  . I'm not really aiming for zero at all. Because of my bad OP I'm just delighted to be on a low dose  and my ideal is 2.5mg  for as long as it takes. While on the OP topic, a while ago you sent me a reference about fracture risk which was really interesting and now I can't find it. Sometime, if you have a minute, can you re-send it???  Many thanks - and no rush.  J
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      Um - I have no idea what it was - if light dawns I'll send it!
  • judy93591
    judy93591 Juno-Irl-Dub

    Posted

    Hi, it sure was encouraging to read your post about your improvements. All the things you listed are exactly what I am dealing with. I am in US, and my PCP and Rheumy are hell bent on the rapid reduction. The only time I had total relief was in the beginning on 20 mg daily. Three weeks later PCP started reduction, wasn't long I went into flare, which caused bursitis first one hip, then the other. I began this ugly journey in May, this year. I can finally walk (last 2 1/2 weeks) without cane/pain. I was EXTREMELY ACTIVE before this. I am at 12.25 daily now and see Rheumy on Tues. I am taking copies of the slow reduction and hope she agrees. She is quite open. We shall see!  Thanks for the positive note. It made me HAPPY! 😊
    • Juno-Irl-Dub
      Juno-Irl-Dub judy93591

      Posted

      Judy, I'm sure you've read the many many posts on this forum advising never to reduce quickly mostly because it doesn't work!  I found the the very slow reduction method helped me to fine-tune my dose( depending on symptoms) but before I started on it, I  also printed out a copy of it and showed it to my rheumatologist who was quite happy for me to carry on. Like yourself, I was really active before PMR struck and it's hard getting used to 'being ill' but feeling unwell doesn't last . . . 

      Finally, it's good to hear that I made someone happy - so now YOU'VE made my day! So there.   

      Kind thoughts, J

    • judy93591
      judy93591 Juno-Irl-Dub

      Posted

      Hi, I found/read the schedules AFTER THE FACT OF DR cutting my dose.  But, as I stated, sure hope Rheumy is accepting of it!  I will let you know the outcome! 
  • VickieS
    VickieS Juno-Irl-Dub

    Posted

    Thanks for your wrords of encouragement to all of us who are in this journey together. I think that you listing the improvements you've seen after reaching a low dose gives us hope that these nasty side effects truly will go away as we reduce. They hang on so long, that you start to wonder sometimes, so it's nice to have someone say that the future really will be brighter! Thanks again.biggrin
  • maureen96014
    maureen96014 Juno-Irl-Dub

    Posted

    Hi Juno

    Thanks for those words of inspiration so gald you are feeling so well - I am at the 6.5 stage two years after starting Pred(got stuck for months on 7mg) and your message has given me so much hope

    Keep well ...............

    Maureen x

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