Successfully and steadily came down to 2mg of prednisolone in February this year. Decided, based on what seems to be the current wisdom, to sit on 2mg for 6 months. All good. No symptoms. Recently decided to try for 1.5.
All was well for a few weeks, and then I noticed significant hip stiffness returning. - put it down to different exercise regime (in Melbourne we're in tight lockdown). Wrong!! Once I accepted that lack of symptoms didn't mean PMR had gone away, and bumped the dose back to 5mg, stiffness disappeared.
A salutary lesson.
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squashie
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Have you seen the discussions recently where we tell people that Prof Dasgupta in Southend, patron of the charity, told us in a webinar a few months ago that he often leaves patients at 2-3mg indefinitely since he finds it avoids relapses and there is no risk at that sort of dose?
I had, thank you PMRPro. That was part of why I stayed on 2mg for 6 months. I guess I fell for the trap - no symptoms = no PMR. I know . I know. Won't make the same mistake again!!
They don't have 2.5mg pills at my UK chemist and the 1mg pills are well nigh impossible to divide they are so small and just crumble to powder. How do you manage 1.75mg? It would be impossible for me.
Thanks Darcy2000. Best I could do would be to halve a 5mg, which is a slightly bigger tablet, using my pill splitter. That would give me 2.5mg. Then I could halve the halves. But that would only give me 1.25mg. Still don't know how 1.75mg is possible. Even my excellent pill splitter won't divide the tiny 1mg tabs.
That is where the concept of the slowed tapers, whichever one you choose, comes in. You take the smallest amount you can achieve by cutting - and then use a slow approach, challenging the body with the new lower dose just one day at a time at first and getting the days closer together over time. If need be, you do each step not just once but 2 or 3 times. It does work.
I did the slow taper, and for my last 2 mg I repeated every step twice. It took a year to taper from 2 to zero. (I had been around 2-3 mg for more than two years before this taper.) All well for nearly three weeks, by four weeks I was back on pred. Currently taking 1 mg.
I was diagnosed with PMR 5 years ago. I’ve been stuck at 3.5mg for over 18 months. Have tried more than once to get to below 3 and managed to get to 2.5 for about a week then the stiffness and pain I my shoulders and arms returns and I just generally feel unwell with low energy. I can’t bear it. I find on 3.5 mg I feel normal below that I don’t. So for now I’ll stick at 3.5 mg. I seem to have lost my side effects at this low dose ( moon face and weight gain) and feel fit as and well. I will try to drop the dose again in a few months.
How true! I was actually to zero after an entire year of tapering excruciatingly slowly from 2 mg in .5 mg steps. After three weeks, not so good, and after four weeks, back on pred. Went to 5, then quickly down to 2 and now on 1 where I think I may stay until pandemic stress is over, however long that takes.
Who could believe that .5 or 1 mg could make so much difference?
The experience you and Heron describe are why I wonder at my rheumy's advice to get off pred then we'll slowly get off the MTX. Currently on 1mg pred and 20mg weekly of MTX and feel not bad (when rain comes the arthritis causes aches but panadol seems to fix that). One try to 1/2 led to flare so even more cautious this time. Also in Vic. Good to see numbers going down.
Well it took me about 12 months to come down from 2mg to zero. I did this by firstly reducing half a mg for one day of the week, then the next week reducing another half on another day and so on. But I got there in the end and have been in remission now for 4 years so don't give up!!
I just can’t get lower than 2.5mg without a flare. Think I am going to stick with 3mg for at least 6 months and try again. It’s frustrating but my GP is very supportive.
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PMR: damage to tissue caused by living with some chronic inflammation rather than take higher level of pred?
Advice on reduction whilst ESR higher
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⁹Suspect 1mg was too low, next step?
Counted my chickens too soon...!
