I would like some advice about likely flare of PMR

[Chiqui1950]

At the suggestion of Dorset Lady I am posting this in the open forum-- I was afraid to post in the wrong place.

I was just visiting my family for a month in Peru - just after I had just began a taper to 2.5 which seemed to be going well. I did a lot of walking during my visit as I did not have a car. As the weeks went by I started to feel pain in the muscles around my hips and difficulty standing up--- which was very evident after sitting and not when I was walking. At first I thought these symptoms would go away but then they spread to one shoulder and all these symptoms did not relent. As soon as I got back I was able to see my GP who ordered many tests which turned out to be normal but my sed rate 23 and my crp 4 although within the normal range, were unusually high for me. My levels are usually are around 11 and 2.

In one of the articles on this forum addressing a flare, there was a suggestion to add 5 mg to the current dosis and stay there for 7 to 14 days. The symptoms almost gone after a few days of adding 5 mg. to my 2 1/2. In light of the important points raised by Dorset Lady I will stay at 5 for 14 days. but then I am unsure when or how to retake my taper. I read that after a flare it is a good idea to stay at slightly above my last taper for a couple of months. I am not sure what is the safe "slightly above" dosis. Should that be at 3.0, 3.5 or 4 mg. since my last taper was 2 1/2mg.? (I think I would have succeeded at this dosis, except that I really overdid it walking many miles daily for many weeks-- plus the stress of travelling, etc.)

I am unable to reach my reummy for a few more weeks. Because my initial diagnosis was CGA, i was concerned that not responding to possible PMR would make me more at risk of a relapse of CGA. Your feedback is really important to me.

Thank you so much in advance!

[DorsetLady PMRGCAuk volunteer]

Have replicated some of my original reply here, with slight amendments.

The idea of the flare protocol is that because you are only on the increased dose for a short time you can safely drop back down to just above previous dose without having to taper.

Your original plan was to stay at increased dose for only a couple of days, but glad to see you have decided on 14 days.

As your previous dose before your flare was 2.5mg which was okay before your holiday and extra walking, it probably would be sensible to go down to at least 1mg above it - so 3.5mg.

So long as you don’t have GCA symptoms- then I would say it’s just your PMR that grumbling…but with GCA in the background that’s another reason to make sure you have got everything back under control, which after 14 days at increased dose you should have. Obviously if any sign of GCA then you do need to contact your doctor.

Hope all goes well.

[PMRpro Ambassador]

3.0mg might be enough if you were really good at that before the holiday and added walking. But it might be better to be really sure or you might end up having to repeat the same process again and ending up with more pred than it would have been taking the safer route of 3.5mg.

[Chiqui1950 in reply to PMRpro]

I would love to start again at 3 but I agree that the safer route is 3.5 mg--- I think I will do that!!

Thank you so much PMRpro!!