What do I do next?

[Pistachios]

Diagnosed 19 months ago with PMR. Prescribed 15 mgs of prednisalone and told to gradually reduce it. Recently got down to 3mgs and two weeks ago experienced a flare up. Doctor said go back to 5mgs. Not workingafter a week.

[HeronNS]

This may seem a bit scary, but try adding 5 mg for a couple of days. You can drop down from that dose very quickly, no need to taper, in a few days. If that 5 mg extra doesn't help then you should consult with your doctor. I would take 5 mg more than what you are taking now, and if it works drop down, maybe over a few days, back to the level your doctor recommended, NOT back to the low dose you had been on. And remember, get your rest, pace yourself!

[PMRpro Ambassador]

I would follow the usual recommendation for dealing with a flare: add 5mg to the dose where it happened for up to 7-10 days. That would be 8mg, possibly 9mg. If that works well, drop back to 5mg in a couple of steps a few days apart. You probably need 4mg for the time being but 5mg is also a low safe dose and you know you are safe there,

[Pistachios in reply to PMRpro]

Thank you. I will try this and see what happens. This is the first time I have had a problem so far.

[Kendrew in reply to Pistachios]

I've just gone through almost exactly the same situation. 16mths after initial diagnosis, I'd managed to taper from 15mg to 2.5mg, and then very gradually all those old familiar aches and pains begsn to slowly re-emerge. Unfortunately for me, I've struggled a bit to try and bring things back under control, as I think I left it too long before addressing it. I'm back up to over 10mg but tapering down again now. So frustrating but so important to be patient and not rush things.

[Pistachios in reply to Kendrew]

Thank you. I have decided to go back to 9mgs ( what I was taking + 5 mgs and then go back to 5mgs after a week and see what happens. Leaving out the tapering as suggested earlier.You're right, patience is so important!

[PMRnewbie2017]

You've done very well to reduce from 15mg to 3mg in 19months. When i was diagnosed in nov 2017 i was determined i would beat PMR in under 2 years. The reality has been very different. Based on my experience and some clinical knowledge can i suggest that you find the dose that works and reduce very slowly from here on, especially from 7mg onwards. I have found that the more flares one has, the higher one might have to go to find the golden dose again. PMR is fickle. If the illness really did burn out in 2 years as the text books say, we patients wouldn't be finding that on average it takes 5.9 years to become Pred free. To quote on of PMRPros sayings " You are not relentlessly reducing to zero. You are finding the dose that controls the symptoms". Once you are truly symptom free then reduce using a slow taper schedule. The tortoise really does win this race.

[Pistachios in reply to PMRnewbie2017]

I think "Finding the dose that controls the symptoms" is a very important concept for me to get into my head. Thank you for that very important nugget of advice. I have been concentrating on getting the dosage down and suddenly realise that that shouldn't be the objective. I must change my mindset!