New to PMR Question

[Raingod]

Hi, only been diagnosed with PMR just over a month ago. GP started me on 15mg pred. initially for 3 weeks .

Did well and symptoms reduced by around 60-70%, I was extremely happy to be more mobile.

Review day came and GP was equally pleased with my progress and immediately reduced the pred down to 12mg.

A week later and my symptoms are getting worse again. Hip and leg pain and stiffness, neck and shoulder pain/ stiffness, headaches (back of head) and so tired. You all know the score.

My question is, is there a standard/ recommended way to reduce the pred? Or is it just trial and error in doses arbitrarily decided by whichever GP you manage to see on the day? (I’m trying to get a return appointment)

I get they want you off steroids as soon as possible, but at what cost? I’m finding it increasingly difficult to work and increasingly frustrating not being as mobile as I’m used to.

[PMRpro Ambassador]

Hi and welcome!

"They" may want to get you off pred asap but "they" aren't in charge. The PMR is and until it chooses to burn out and go into remission you will need some pred, enough to manage the inflammation at any given time.

You are started at a dose that is hoped will be more than you will need ongoing - but 15mg is near the bottom of the range for starting dose and may not be enough to clear out all the accumulated inflammation. 70% improvement is the least they should look for to confirm the diagnosis but they really should be looking for more relief before starting to taper the dose, 3 weeks at 15mg is rarely enough and I would say in your case that INCREASING to 20mg would have been better idea. Unless you have had a good clean out there is no buffer to allow you to taper and actually, dropping by 3mg at one go was asking for trouble. 2.5mg is the usual and for many even that is too much. Some can only manage 1mg at a time.

What concerns me is the headache - that can be a sign of GCA so you do need to get some medical advice and your markers checked. If you have raised markers, the starting dose should be stuck to until the markers have fallen as far as they are going to before reducing the dose.

There is a section on Tapering under T in the FAQs - there is a link to the main page index of them at the top of every thread under the post.

[DorsetLady PMRGCAuk volunteer]

For the record I agree with PMRpro, not long enough on initial dose, and probably should have been higher especially as you had less than 70% improvement which is generally the criteria quoted. Followed by too fast a reduction.

Add in the fact you are still working and no wonder you are struggling. Please get your headaches checked out .

Maybe have a read through this so you have better understanding of your illness -

healthunlocked.com/pmrgcauk...