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What is your opinion on decreasing pred.?

Posted , 7 users are following.

Elijo
Elijo

I called my GP  a few weeks ago to ask for a reduction in Pred since I was taking 30mg until Mar 30, but c/o of SO many unpleasant side effects. He reduced it to 20mg and made an appt. to see him.  So I went on 20mg. w/ no pain, kept the appt. when he said to reduce to 15mg. on March 15 and see him on Mar. 30.  Two days ago, i started on 17,5 mg. on my own until March 15.  I've had no pain since Nov. 1 when I started on 40mg.for one month.  Before the prednisone,I could NOT function, was very stiffened with LOTS of pain and stiffness.  He said when I get to 15mg. we will have to go much slower.  My lab work has not been far off.  What do you think of my doing a gradual reduction to 17.5?.

0 likes, 21 replies

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  • ptolemy
    ptolemy Elijo

    Posted

    If you have no pain, there is no reason not to give it a go although I would not do it after only two days, as you need to ensure that you have stabilised OK. Perhaps stay on 17.5mg until 30 March. You started on a very high dose, did your doctor think you had GCA? People normally start at 15 mg for PMR and sometimes 20mg if they are a bit chubbier. When I first took pred it really was a miracle, like you, up until then I could hardly move and the pain was excruciating. I had been told I had a virus.
  • margo25238
    margo25238 Elijo

    Posted

    TRYING TO AVOID A FLARE:  I tried several months ago to decrease, when i got to 5 i had a flare and went back up to 7, that was the beginning of February.  Since then i have been very cautious, decreasing .5 until now; i am on the dead slow method - spent the last three weeks on 6 and now tomorrow will go to 5.5 for another three weeks.  Approaching 5mgs is making me anxious, and my goal is to be off Pred entirely!  Would appreciate feedback and suggestions.

    • ptolemy
      ptolemy margo25238

      Posted

      We would all like to be off pred entirely, but the PMR dictates when we can stop using it, it is not a matter of getting down to zero and the PMR will magically disappear. If you are getting flares it is still around sadly. Personally I think I would cut down .5mg a month rather than every three weeks at the level you are at.
  • Sheilamac_Fife
    Sheilamac_Fife Elijo

    Posted

    I would give it a go too. Sensible to slow your reduction to 15mg. You might want to stay on 17.5 for a bit longer than 5 days though before hitting 15, to make sure you are ok. You don't want a flare! 
    • Elijo
      Elijo Sheilamac_Fife

      Posted

      Thanks for your good opinions, makes good sense.  When you have a flare, is it harder to control?  I've never experienced one yet.
  • Sheilamac_Fife
    Sheilamac_Fife Elijo

    Posted

    I think everyone's fear is that they will have to back to the beginning dose again! I know I do! It has taken me since July 2014 to get to 6mg, I couldn't bear to do all that again! But this isn't necessarily so, sometimes it just has to go up a few mg if the flare is caught early enough. 

    What at does seem to make it harder to control is if you yo yo your doses up and down. 

    However, you are doing so well so far. Fingers crossed you get down to 15mg by the end of the month and then you can start the slow taper down. 😄

    • Elijo
      Elijo Sheilamac_Fife

      Posted

      I think I will take your advice and stay on 17.5 a little longer before I go to 15mg.  That makes good sense.  You certainly have worked hard to get where you are. Great!  The side effects on 30mg. for 3 months were getting multi-faceted and difficult in multiple ways.  I am feeling better on the 20, and now the 17.5mg.   I don't suppose that you have many side effects at all on 6 mg., do you?

      Glad you're doing well!

    • Sheilamac_Fife
      Sheilamac_Fife Elijo

      Posted

      Sadly, I still have quite a few side effects. It has disappointed me too. Nothing life threatening, more life spoiling.... The extras stones in weight, the moon face, breathlessness, horrendous fatigue (but that might be because my adrenals haven't picked up yet), blurry eyesight and the annoying dense brain. All still here! No diabetes, tummy problems or high blood pressure. 

      I have not had any actual flares with pain etc. I'm thinking this is because I have not raced to get down to zero and have come to terms with the side effects (most of the time....), however, it may just be luck. Who knows! This seems to be the most variable condition!

      Ive stopped reducing. I was coming down to 5.5mg but I'm moving house, my man has a new job and I've been asked to write a new cookbook. All good things but still a quite stressful. The fatigue seemed worse so I thought I'd go back to 6mg and stay there until I get settled in the new place. Hopefully that will work and will give my adrenals time to wake up...

      i see Eileen has commented. That's good! Her advice is always worth listening to. 

      Hope it works out for you over these next few weeks. Don't let the doc rush you! X

    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Hahaha... It's hard to stop me... 

      The Whisky Kitchen

      100ways with whisky and food

      it also has a travelogue of Scotland in the whisky regions

      won a best in the world, in Paris, the year after it was  published in 2009.

      We were soooo astonished! It was our first book. So exciting, can't tell you!...

      See it on Amazon!

      hehe X

       

    • EileenH
      EileenH Sheilamac_Fife

      Posted

      Didn't you say there was another to come? What this time - the new Scottish drink? Gin...
    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      It's going to be Book 2. Customers have been asking for a follow up for years and last week we finally persuaded the Publisher to go for it. He didn't want a new book in competition with the first one. We thought that was nonsense and the sales are not falling from book 1 so we are going for it!

      Gin? Possible... Actually one of Graham's new jobs is as Uk sales Manager for Firkin Gin (and Whisky of course, but the push is on this new Gin). So you have your finger on the pulse, Eileen... 😉😄😉

    • EileenH
      EileenH Sheilamac_Fife

      Posted

      I'll be round asap when we're over in Fife...

      The concept of Scottish gin appeals - they have just got the first South Tirol whisky aged enough to call it that not schnapps wink rolleyes 

      Our niece works for a company (which shall remain nameless here) but has provided Pimms (and the correct way to make it) and other delicacies for her parents - in the wake of maty leave she is now part-time and in Baileys sad  about which we are all less enthusiastic. Except possibly over/as icecream...

    • Elijo
      Elijo Sheilamac_Fife

      Posted

      You have a lot going on with the move and the NEW BOOK!  It sounds interesting and your brain must be working pretty good to do that.  We are hoping to hear more about it on this very site!   I moved 4 years ago to downsize, by myself, and am now in a "partial move" since I was remarried last year and moving into my husband's home, but do want to keep my villa.  Yikes.    Sorry your side effects have not really gone away, and that is what I was hoping for.  Maybe that will change when the adrenals kick in.  I'm taking yours and Eileen's advice to go slow  Good luck with your new book!
    • Sheilamac_Fife
      Sheilamac_Fife Elijo

      Posted

      Thanks Elijo!

      it remains to be seen about my brain and the book... That's part of the stress, but I will be putting the recipes out to testers to make sure I'm not talking nonsense.., haha

      When the deadlines were getting set etc I completely forgot that I was ill and responded the way I did first time around. Then deadlines were a good idea, to focus my mind! However, I will slip the dates if it becomes a problem. They are pretty arbitrary anyway. 

      Good Luck with your move! I started packing yesterday, but just going slowly, others will help. X

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