I've had PMR and GCA since January 2020 and, with a few flares, have very gradually tapered to 2mg of pred. I got there in early April and was OK for 5 weeks. In mid May I increased to 3.5mg for a week as I was getting some GCA symptoms around my jaw and temples, and had a stressful journey. Then I tapered to 2.5 for a few days before getting back to 2mg for another 5 weeks. Towards the end of June I was having typical PMR aches in hips and thighs as well as fatigue, so I increased to 5mg for 4 days. From 9th July I increased to 6mg for 5 days, down to 2.5mg for a few days , up to 7mg for a few days. Each time I try to get back to 2.5 the aches come back.
Please help me get back onto an even keel! I know the theory, but when you're caught up in it, It's not so easy to take a dispassionate view.
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PastelsinArt
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A. that each time you have increased dose -it’s not been enough nor have you been in it long enough to get the flare controlled before you have dropped back down. You need 5mg above dose you were last okay at so I would say that was probably 3mg -so increase to 8mg. Plus you can stay on higher dose for up to 14days -most find 7-10i is enough.
B. It’s no good dropping back to the dose that caused a problem -you need to be higher -otherwise you just put yourself in same situation.
Even though you may know the theory - a read of this might reinforce it -
Stop trying to go back to where the flare happened - that is your body telling you that you have reached your destination - the lowest effective dose. It isn't a relentless heading for zero. However slowly or carefully you taper you will not get past that dose, the lowest dose that manages the symptoms as well as the starting dose did.
Every time you go up and back down and flaring you are making the next time harder. With a bit of luck 3mg long term will work - but it might be 3.5mg. But it certainly isn't 2,5mg.
Thank you both, Dorset Lady and PMR pro. I will follow the advice. I'm so keen to take the minimum dose I can that I lost the plot a bit, and was reducing before things were properly under control. Also in a week we're going on a family holiday and I'm anxious to be ok and active and not dealing with a flare so that was also clouding my judgement.
Hi PastelsinArt! Why is it we can always sort other people’s’ problems, but as you say, you lost the plot a bit. We all do that when it comes to managing PMR. Thank goodness we have this forum and marvellous advisors to keep our feet firmly on the ground. Keep smiling!
Yes, I completely agree. And after just a day on 8mg as advised by Dorset Lady I feel so much better that the temptation is to drop back down to a lower dose tomorrow. BUT I will follow the plan and not lose the plot!
Hopefully this part of my story will encourage you. For literally years, with one major exception - a big flare caused not by too low a dose but, pretty sure, an increase in disease activity - my "lowest best dose" was *about* 2 mg. At that dose there are no discernible side effects. I would occasionally kick the can, so to speak, and see if a taper was possible, and did have a brief but unsuccessful fliratation with zero. Honestly, it's been okay, especially after accepting it is what it is. Lately I've been encouraged by a silly thing: I forget to take my pred (now down to 1 mg) and being reminded, not by pain but by fatigue, as adrenals not quite up to snuff yet. Every time this happens it seems a bit easier than the time before. If you find your sweet spot is 3 or 3.5 it's a truly low dose and eventually you'll get lower. It really is a case of the lower, the slower. I got to 3 mg by the end of my first year on pred. It took another year to get to 1.5, and that proved to be not quite enough, so between 2-2.5 for a long time. All this started with 15 mg in June, 2015!
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