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Reducing too fast?

Posted , 15 users are following.

brian75018
brian75018

I just want to let people out there know that my method was to reduce down from 15mg as quickly as possible as this is not generally well regarded. However it has worked fine for me, I very soon got down to 5mg and I guess within less than a year to 1mg. For a while I have been on about 1/2mg and occasionally I try to do without (to check if I can!) but unfortunately I still seem to need just a small amount.I thought for a while that the sodium bicarbonate I have recently been taking may have taken the place of the pred but alas apparently not.

 

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  • sharon35553
    sharon35553 brian75018

    Posted

    Brian hello, I was completely off the pred for three months after three years. Just yesterday put back on 20 mil because of return of GCA symptoms. I cried all night having done everything right only to be starting all over again.

    the three months off was agony but I stuck with it. For past two weeks had jaw and scalp tenderness along with eye pain so Rheumatologist immediately put me on 20 mil for two weeks and ordered blood tests which always is negative. 

    My eyes were really changing so he got nervous I guess. 

    Now I'll have to go the slow taper again but thinking maybe I can drop to 10 mil in the two weeks to get down to a low maintenance dose.

    lucky you being able to maintain this and I wish you good luck in being pain free.

    Sincerely,

    sharon

    • brian75018
      brian75018 sharon35553

      Posted

      Hi Sharon, thanks for your reply and sorry to hear what happened - why did you come off for 3 months - were you feeling like you had recovered or just seeing if you could manage without pred despite the discomfort?
    • sharon35553
      sharon35553 brian75018

      Posted

      Brian I was tapered by 1 mil a month and was thrilled to be done. I was about 90 percent pain free. I began getting some groin pain and shoulder pain within a week of being off the pred and truly was confused as to whether it was withdraw earl or a flare so I just kept going. Within two weeks pains worse and within first month it was like where I was first diagnosed. Still I fought it and prayed for it to ease up but no such luck.

      I had the scalp pains and jaw pains way back at beginning so was scared I'd lose my eyesight and Rheumy said take 20 mil for two weeks then 15 mil for a few weeks. 

      I really expected to be done with all this but I'm having no major side effects so will see I through and hope for the best.

      Thanks for replying

      Sharon

    • margot34956
      margot34956 sharon35553

      Posted

      Oh dear Sharon, I so get why you cries all night!!! How very hard for you.

      I want to wish you well, and pray for you be able to drop to the 10mg in the two weeks.

       

    • EileenH
      EileenH sharon35553

      Posted

      Your PMR is obviously still active - and if the rheumy suspects GCA from those symptoms he should have put you on a higher dose than that. Nor should you be dropping the dose that fast either. PMR lasts an average of just under 6 years - GCA is usually over a bit sooner. But not taking pred for active PMR increases the risk of it progressing to GCA. And untreated GCA can cause a lot of nasty effects including heart attacks and stroke an irreversible loss of vision. It isn't something to mess with.

      I'm sorry to sound so dramatic and perhaps hard - but I would hate to think you had GCA and it got worse because you stopped the pred too soon.

    • sharon35553
      sharon35553 margot34956

      Posted

      Thank you so much Margo, on top of all this my husband had a minor stroke three weeks ago, I try not to complain and now I'm pretty sure the stress has taken its toll on me.

      i thought I was handling things pretty well but maybe In reality I wasn't.

    • sharon35553
      sharon35553 EileenH

      Posted

      Eileen I do not think you sound to dramatic or hard, I think you know what you're talking about so thank you.

      i agree with you and I don't plan on dropping by more than 1 mil maybe 2 at the most in two weeks and continue with the slow taper.

      i always did fine with the taper and when I was at about 1 or 2 mil I should have stayed, I bet if I never tapered off I'd be ok and maybe I'm one of the people who need to remain on that low dose for life.

  • EileenH
    EileenH brian75018

    Posted

    Good for you - anyone would be able to reduce quickly to just above the dose they need but unfortunately you don't know in advance where that is going to be. The longer you are at a higher dose to manage the situation originally probably the harder it is to reduce. And gender has a great role to play - men almost always have a far easier journey than women. Another of the "no-one knows why" factors - but it is so.

    I do hope your success continues.

    • brian75018
      brian75018 EileenH

      Posted

      Yes Eileen, it's a funny old lot with plenty of unanswered questions.

       

    • karenfizz
      karenfizz EileenH

      Posted

      Hi Eileen

      I have now had a month on 15mg pred then 3 weeks on 20mg (as the 15 didn't seem to be clearing the shoulder pain). Just this last weekend I had no shoulder pain, was sleeping much better & am due to see my GP tomorrow for further blood tests and probably to start reducing. he will want me to go to 15 for a month, bu my question is, I recall seeing something you put on the site (a link to a paper?) about reducing dose being no more than 10% of total (I've tried to find it but can't so could you post it again if my memory is correct please?), so should I go straight to 15 or would 17.5 be more sensible?

    • EileenH
      EileenH karenfizz

      Posted

      I can't find the actual original paper any more - but it is a long held opinion by top tapering experts. Tapering is different from just reducing a pred dose - tapering is being used to identify the right dose for YOU and NOW, it is also called titrating the dose, reducing is for short courses where you are to get off pred immediately. Generally we have been at a higher dose rather longer and it becomes harder to reduce the dose - it will work at 5mg at a time but you may find it uncomfortable. That discomfort is called steroid withdrawal and is so similar to the symptoms of the disorder you are taking the pred for and you may think it is a flare and go back to the previous dose unnecessarily. You are looking for the dose that works now - and that tends to be higher in the first few months of PMR. Often the underlying autoimmune disorder is more active then and then calms down a bit - so you can manage with less pred.

      This paper 

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      suggest 2.5mg reductions down to 10mg. They find this way of reducing also reduces the rate of flares from 3 in 5 to 1 in 5. 

      I would go via 17.5mg and I would also consider trying one of the slower ways of reduction such as the DSNS or an adaptation of it:

      https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

      You still reduce the same amount in a month, just a few weeks behind, but it is easier on the body. And it is YOUR body - not the doctor's! 

  • Michdonn
    Michdonn brian75018

    Posted

    Brian, all I can say is lucky you. I have to take it slow and easy or I have a flare, worse was from 7 mg to 30 mg.

    Good luck. ☺️

    • brian75018
      brian75018 Michdonn

      Posted

      Hi Michdonn, yes there is I guess always a chance of a big relapse but so far I have not had this.Thought I should share just so all different experiences are on the record
    • Michdonn
      Michdonn brian75018

      Posted

      Brian, good for you and I mean it, it's great to hear that someone can get through this without a flare, I had one bad, couple of mild and the one I am in the middle of now. I really wish I was so lucky. Continue good luck. ??

  • patricia38799
    patricia38799 brian75018

    Posted

    Hi Brian, are you still taking the bicarb.? if so how much did you take, as I have given it a try, but getting blood test done in a few days and the doctor wanted  me off the bicarb for a few days before the test  I am feeling ok on 6mg of pred.for a few more weeks then to 5mg. Good luck

     

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