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margaret01981 margaret01981

Tapering.. questions about dosing

I have been on Prednisone 2 months, taping schedule from 15mg.  To  7.5 before next appt.   it is about 1.25 mg per week. I am currently at 11.25.

My Sdr was 94, crp at 49 in the beginning.  And am going to call for latest blood results..

I am starting to notice some stiffness especially in the morning with reduction.  My doctor said to try and tough out a few days..

If it gets too painful, I will call them.   I guess I need to ask doctor for some wiggle room in my taper( where I decide for small adj’s.  I imagine this might happen often... 

Should I Try to stay the course as long as I still am mostly pain free?   I wouldn’t call the discomfort a flare.. but don’t want to cause one either..

Your experiences about tapering have been interesting and have me wondering...

10 Replies

  • Anhaga margaret01981

    Why does your doctor want you to reduce so quickly?  I'll tell you about the first few months of my PMR journey because you can compare and see how you feel about approaching your doctor.  I started at 15 mg and stayed there for four or five weeks, after the pred miracle!  Then, doctors orders, I reduced by 1 mg per week.  She told me if I started to feel some symptoms returning I should stop tapering.  As she was on holiday when I found the symptoms were indeed returning at 9 mg I went on line after about nine days to ask the question whether I could increase the dose .  That's when I found this forum and the answer was yes.  So I went back to 10 where I had been fine (10 mg) and stayed there for a couple or three weeks.  Then I began to use the Dead Slow Nearly Stop tapering method,  I did go to my doctor and showed her the plan and asked her if she thought it would be okay to use and she said yes.  I have used that method since then.  I reached 7.5 mg about six months after starting pred.  That was two and a half years ago.  For nearly two years my dose has been below 5 mg, most of that time in the 2-3 mg region, where my doctor says she is quite happy for me to be.  I regularly test the waters to see if I can reduce a bit more  but it seems this is where I need to be right now.  The duration of PMR before it goes into natural remission can be as much as six years, for some it's less although hardly ever less than two, and for a few it's more.  It's not a race and one is more likely to have a flare of the disease and have to raise the dose considerably.  So my suggestion is that you increase your dose back to the level where you last felt comfortable and stay there for a bit, perhaps a few weeks, then begin a much slower taper.  The 7 mg level is also where the adrenal glands have to start working again so that's another reason to be slower, and it is important to find the lowest possible dose that will control your symptoms.  Too rapid a taper means you may gallop right past that level.  Certainly don't try to "tough it out" for more than a week and not at all if the pain and stiffness get worse.

    My doctor made it clear from the beginning that I would have a lot of say in how the taper would proceed.

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

    • margaret01981 Anhaga

      Ok thank you...   If I start feeling worse at all. I am going to leave a message with them that I am going to stop tapering until I am pain free again..   I go back July 5th... he thinks I should be at 7.5 by then.    I am thinking maybe 10.

  • Michdonn margaret01981

    Margaret, although many doctors think it is a race to get off Pred; they are wrong. I started on 20 mg rushed down to 7 mg had a flare and had to increase to 30 mg to get relief. So I have taken far more Pred because my wanted to rush. I have been PMR pain free for a year, tapering using DSNS. I think positive and try to smile. ☺️

  • EileenH margaret01981

    Reducing 1.25mg per week is crazy. Any reduction approach that is greater than 1mg per MONTH is associated with flares. ( http://www.rcpe.ac.uk/sites/default/files/quick.pdf )

    The paper this article refers to

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    says 2 things that are relevant here; one is that PMR is a chronic illness which has a median (average) duration of 5.9 years. The other is that  "the median time to taper below 5 mg a day for 6 months was 1.44 years".

    To have a patient aiming for 7.5mg at that rate is likely to result in them flaring and probably having to go back to the beginning. When any PMR symptoms return that is a sign you are close to the dose you should be looking for: the lowest dose that manages the symptoms as well as the starting dose did. Under most approaches you would have spent at least a month and probably 6 weeks at 15mg and the another month at 12.5mg (it is described in the first link I gave you). And if the symptoms get worse - you are already too low.

     

  • ptolemy margaret01981

    If you are having any pain problems STOP reducing. Also trying to tough it out does not work, the PMR has the upper hand and once it has the opportunity of taking over it will. I had a rheumatologist who at the beginning wanted me to do ridiculous reductions. The consequence was I was in then in the most awful pain and had to go back up again. Also It meant I had started to yo yo my dose which is not such a good idea if you do not have to. As Eileen says the reduction you are being asked to do is ridiculous. Another doctor who does not understand steroids.

    • margaret01981 ptolemy

      Yes,  thank you for your advice... i am stopping reductions until I am feeling good for at least a period of time..   with all your inputs from everyone...

      It is hard for me to judge when to start taper again-  after I feel good for how long?   

    • ptolemy margaret01981

      If you can go a couple of weeks or so and feel fine have a go at tapering slowly. If you feel bad STOP. Keeping slow is the important thing. Going hell for leather really does not work, although a lot of doctors would like us to.

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