Flare advice please

[greatauk]

First time posting although I've been following your site for a few months and it's helped keep me sane.

I've suffered from fibromyalgia all my adult life (I'll be 80 next month). I'm used to 'pain of the day': back one day, knees the next etc. Shoulders always bad. Costochrondritis causes rib pain which disrupts my sleep. TMJ disorder causes jaw pain and toothache – easily confused with GCA.

The pain in my shoulders from PMR was quite different. I was diagnosed a year ago and prednisolone brought immediate relief. My hips didn't hurt so I didn't recognise the stiffness until the steroids cleared it and I could move again!

I started on 15mg prednisolone, gradually tapering. No flares, but each reduction made me feel quite ill. Going back to the previous dose for a short while helped. However, a reduction from 6mg to 5.5mg for five days made me feel really ill so I went back to 6. A few days later I had a flare: hip so stiff I had difficulty walking.

A blood test showed no inflammation but my GP recommended increasing prednisolone to 9 or 10mg and then reducing by 1mg every 4 to 6 weeks.

Family illness and a UTI (my usual response to stress) intervened but now clear of antibiotics I went down from 10 to 9.5mg, planning to use DorsetLady's recommended tapering plan. Within a few hours I felt very ill – legs shaking, exhausted etc – and this morning woke at 4am with stiff back/hips. Went back to 10mg today but still stiff and weak.

My queries:

Should I follow the flare protocol and increase the steroid dose still further and, if so, should I try 12mg or more?

Could I then go back to 10 in a few days if I feel better or would I need to reduce in 1mg increments again?

My GPs are excellent and would trust me to up the dose if I felt I needed it.

[PMRpro Ambassador]

Hi and welcome now you have emerged from the shadows!! You seem to have collected all the confounders - and yes, makes it all a bit complicated!

We'd have said add 5mg to where you flared so 11mg. It is surprising how much difference even such a small amount can make. I'm not sure that 10mg is enough at this stage - you have flared good and proper and you aren't going to be able to hurry back down I suspect. At least 11mg and for a couple of weeks and be sure you feel better. And given your problems - maybe 1/2mg steps down.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Agree with PMRpro - and yes good idea to follow the flare protocol -as you are aware if it guess you have a copy. You can stay at the increase dose for 2 weeks without it impacting on the drop back down - maybe to 7mg rather than 6mg.

Would also just say, you may have been struggling with your adrenals as well at the 6-5.5mg doses [some of the issues you had are typical of that] , so ease up on the tapering and yes a slower plan for sure.

One year since diagnosis is not long - so for both for PMR and adrenals, much slower in future.