Flares

[JessicleS]

How do we know that resumption of pain is due to a flare of PMR rather than general aches and pains in the same areas i..e. Shoulders, arms, thighs, buttocks…. .?

I have had PMR for a year now and have gone from 20 mg a day to 5.5mg. I have 2 stomas and I have struggled managing my colostomy on the steroids. Does anyone else have a colostomy or an ileostomy. If so…how have you managed?

[DorsetLady PMRGCAuk volunteer]

hi

You don’t always know -but would say that a 5.5mg you may be a tad too low for your PMR.. plus of course adrenal ls mag be struggling to get going again, Add in your other health issues and it’s probably very difficult to differentiate what pain is what.

What are your particular issues at present?

[PMRpro Ambassador]

To have reduced that much in just a year is a lot - and if you have aches, the chances are that it is PMR flaring because the dose is too low. But adrenal insufficiency can also cause sches and pains.

What are the problems?

[JessicleS in reply to PMRpro]

Hi both, It is very hard to separate things out. I worked out a regime for myself as my Drs' target was to drop 1mg per month but I found that too much so I have been dropping by just the half mg over a period of time...e.g. after about 4 weeks on e.g. 6mg a day I dropped half a mg every 2/3 days for 2 weeks or so and gradually took it down to 5.5mg every day. As soon as I started the drop I started to get pain during the night in my thighs and upper arms...muscle pain in upper legs during the day after any sort of exercise, feeling very low, poor sleep and very fatigued

My stoma output has also been also hard to manage. The drop seems to stimulate change and it can take weeks to sort out by which time I am trying to drop again. I just wondered if there was anyone else with a stoma and PMR and, if so, how they were managing.

I do have some OA in my spine but after xrays on my hips and knees... there is OA there... but it is no more than would be expected for my age (!).

[PMRpro Ambassador in reply to JessicleS]

"As soon as I started the drop I started to get pain during the night in my thighs and upper arms...muscle pain in upper legs during the day after any sort of exercise"

I think you are probably on too low a dose then - and if it were me I'd ask to go back to the last dose you were best at and stay there longterm - which will sort out the constant changes and their effects. I'm on 7mg and stable - my rheumy is perfectly happy with that. It is difficult when there are multiple things to balance against each other.

[ChrisBeeLoop in reply to PMRpro]

Oh the voice of common sense again. Thank you so much for all your advice on the forum.