Don’t recall last time I had pain attributed to PMR. Little or no symptoms of Adrenal Insufficiency to date which I attribute to trying to abide by the not greater than 10 percent decrease in dose steps beginning with 10mg/d dose. Meaning I was cutting and combining pills (e.g., cut a 2.5 mg in half + 1 mg cut in half for a dose of approximately 1.75 mg). Yes, from 3.5mg downward I used 0.25mg decreases to zero.
Now time will tell. I didn’t restrict myself of any activity, but I did limit myself on duration. Stopping at what I would consider 50% of total fatigue.
I appreciate all the information, opinions and access to research provided by those on this site as it greatly helped formulate a plan that worked for me.
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Boss302Fan
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Oh well done! Patience and care appear to have paid off! Long may it remain so. Thanks for letting us know and for giving those of us still on the journey some hope 😊x
Great to hear, and great tapering down 😀. I'm coming up to 4 months at zero, still early days for me and not completely ache/pain free but a paracetamol or anadin works wonders!
I am on your path. I too just reached 0 after diligent observation of the 10% reduction recommendation. I had 1 flare below 7 mg when I reduced too much. Taught me a lesson when I had to go back to 12 mg to achieve some comfort. Whereupon I religiously followed the 10% rule. After 2 mg I tended to be cautious and hopefully have achieved my goal. I too thank the moderators of this forum for their guidance and support, without which we all would be lost in the trees. Our medical profession just does not have the actual experience to provide the cautious guidance that is necessary. Once again, thanks everyone and may you too achieve your goal.
Congratulations! I would be interested to know how much time did you allow between each taper when you were down to the "smaller" amounts? Say from 4mg down. How long was each taper, and when you got to the end, did you start right into the next one? or wait for how long?
From 5mg I used Dorset Lady slow taper using a 4 week program. I gradually introduced on a sliding scale when possible. for example going for 4 to 3.5 I would integrate a 3.75. Whenever possible the 4 week program intent was to to down 0.5 but would try a .25 in the process. At the end, after 0.5 for several weeks I introduced every other day to the ultimate goal.
I stayed with the 5 week schedule as developed. Once I was below 2 mg/d if I got through Th of week 3 (Sun was day 1) with still no symptoms whatsoever I’d skip doing week 4 and go to week 5 (7 days new dose).
I didn’t just arbitrarily roll-the-dice and I didn’t bounce around, I followed DL’s Simple Taper. From 0.25 mg to Zero I did a 3 week taper. Started with Week 2 (Sn, Tu, Th) and jump to week 4 (Sn, Tu, W, Th, Sa) Done! By now I wasn’t concerned about AI and since hadn’t had so much as a twinge I continued super small dose, if PMR was still present would not result in a bad flare. Day 4 now at zero, but if there is still minimal activity I could get a twinge as I move forward. If that happens I’ll take 0.25mg / d for a few days and stop again and see what happens.
As to your last question normally I just rolled into the next taper. Meaning 1 full week at current new dose (wk 5) and then back to wk 1 starting with the next decrease. A few times (around 7 mg/d) I had a slight twinge through week 5, so I stayed on that dose for week 6 and once through week 7 (twinge didn’t worsen so I didn’t increase dose back to old dose). Main thing, if you get a twinge don’t ever decrease. If twinge (1-2/10 pain scale) doesn’t increase in severity hold, if it increases, go back to old dose. I don’t consider a 3-4 pain a twinge!
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