Managing flares

[Paul76]

Diagnosed 6 months ago. Started on 15 mg and slowly reduced to 8mg. Had massive flare and had to increase the dose. 2 weeks ago started back on15 mg. Not really feeling much benefit from the larger dose. Have a GP review next week and expect to stay on 15 mgs for at least 2 more weeks. Am I being completely unrealistic in expecting to feel a quicker response on the larger dose? Maybe I’m comparing it to the magical initial response from the first dose of steroids

[PMRpro Ambassador]

There are two ways of looking at to be honest. It is often more difficult to get a flare under control - especially if you let it get bad before reacting with a higher dose. And that first relief with the starting dose is in comparison to quite a period of being unwell and in pain so the contrast may be being viewed with rose-tinted spectacles!

I personally would say you haven't tapered slowly - 15 to 8mg in 6 months is pretty fast by our standards and studies suggest it takes about half of patients 15 months to get from 15 to 5mg. Had you had any warnings with niggles of the PMR symptoms before you got to 8mg? How far did you go back up from the 8mg - I'm assuming not to 15mg straight away?

[Paul76 in reply to PMRpro]

Thanks to this forum I’m getting a better understanding about tapering. I had slight niggles at 9mg but still went to 8mg not realising I was heading for trouble! I stayed on 8mg for 9 weeks then put myself on to 10 mg a week before GP review. After review I was put on 12.5 for 4weeks but things were so bad I requested a further review after2 weeks. I’ve been on 15mg for 2 weeks now and have a slight improvement. At next review will state I need to stay at this dose until things settle. Then I will ask to taper only 1mg at a time. It really does take some time to understand PMR doesn’t it and GPS seem to think it’s all straight forward treatment but thanks to your support I feel I can convince my GP that I need to control the tapering. Will let you know how things go. Thank you for your help

[DorsetLady PMRGCAuk volunteer in reply to Paul76]

Couple of links - one on flares, one on slower tapering which might be useful -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Like PMRpro would say, not that slow a taper, and the main trouble with going too quickly (whether by time or drops in dose) is that you shoot past the dose you actually need without realising it.

If you don’t stay on your current dose (whatever that might be) for long enough you are never 100% sure it is okay…for some it can take as long as 2 weeks for your illness to flare. So if you reduce at 2 weekly interval which many tapers advise you could allow the inflammation to build up over 4-6 weeks without realising it.

So next time around, when you’ve got things sorted, maybe consider staying at each dose a little longer.

Works out better in the long run.

[alansouthworth42]

Having been diagnosed with PMR some ten years ago I can consider myself something of an expert on the question of flare ups and prednisone adjustment, I would just say that we are all different and our bodies react differently to changes in medications so there is no real point in adopting other people's suggestions and recommendations, it is only through trial and error do you discover what is best for you. Doctors generally know less about the condition than the patient.

[PMRpro Ambassador in reply to alansouthworth42]

OTOH - discussing it with others who have walked the walk provides a background about how to go about establishing that for yourself - or not. What is indisputable is that going about it like a bull in a china shop doesn't work - and that is the nub of the advice and experience quoted here. Otherwise people reinvent the wheel, usually with a flat side, again and again

[alansouthworth42 in reply to PMRpro]

You are of course entitled to your opinion.

[PMRpro Ambassador in reply to alansouthworth42]

As are you of course. But since I've had PMR a lot longer than you and participated in several forums besides this one - I think my experience does bear comparison with that of many others who have tried the approaches talked about here.

[alansouthworth42 in reply to PMRpro]

Irrespective of what you or I write, people will make their own decisions on how to manage their invidual situations, they may or may not accept the advice we give.

[Hildalew in reply to alansouthworth42]

What dose are you on now?

[alansouthworth42 in reply to Hildalew]

Hi, I am on a maintenance dose of 5mg daily.