How Long Did You Stay On Your Max Dose? - PMRGCAuk

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How Long Did You Stay On Your Max Dose?

schmuppy
schmuppy

I began having symptoms in November of 2017, was diagnosed as having PMR when I finally broke down and agreed to try prednisone, which my GP gave me in 10mg pills. I rode very well on 10mg for nearly a year, but both times trying to taper down to 9mg I ended up flaring. Supplementing on a bad day with a couple of Advil usually got me just about pain free too, but I found myself doing that more and more.

This last attempt to taper, the flare was so bad that I tried going up to 12 to get rid of the inflammation and start again. It didn't work as well as I'd hoped, and I had been having a thigh muscle pain issue too, so even though the GP told me not to "chase the thigh pain with more pred" I was having real issues walking, needed my cane for the first time in forever, and I decided to try 15mg for the first time.

Of course, 15 mg worked really well. I'm walking better instead of shuffling and hobbling, and don't need the cane. But my next decision is - should I try 15mg again tonight (I take my pred at 3 AM), or should I try and go back down to 12? What would you guys do?

10 Replies
oldestnewest

Hello, I’m not a PMR expert, I only have GCA but it might help the others if you say what size jumps eg 1mg or 0.5mg and over what time span.

schmuppy
schmuppy in reply to SnazzyD

Hi SnazzyD - I tried to go from 10mg to 9mg, and it seemed to work for a day or two, and then UGH

SnazzyD
SnazzyD in reply to schmuppy

With such a quick reaction I’d go for mainly withdrawal. If you are also on a level a bit too low than would be best, it might make it worse. Perhaps try 0.5mg step. 1mg was way to big for me at this level, 0.5 mg was doable.

It looks like the initial 10mg never really hit the PMR on the head. It is a very low dose to start at. I would carry on at 15mg for a while, ensure you feel OK and then start to reduce again. I would talk to your doctor about it though.

schmuppy
schmuppy in reply to piglette

Thanks Piglette! I think you must be right. I think I'll stay at 15 for a month at least and see how I do.

I have GCA & PMR & stayed on my initial dose of 40mg for a couple of months I think it was & then started to taper. The initial dose got rid of all of my pain. My PMR started with thigh pain. If I was you I'd stay on 15 for a while then taper slowly.

I have PMR and started on 15mg and stayed there for 2 months; then one month at 13mg; 5 weeks at 12mg; 2 weeks at 11mg; 8 weeks at 10mg; one month at 9mg then started a slow taper. It was 6 months on the higher doses before I reached 9mg!

We're all different in what we need and I've overshot the mark more than once and had to go back up to 10mg.

I'm sure the 'experts' will have something to add, but it seems your GP didn't give you enough pred from the outset.

Me: PMR since May 2016

PMRpro
PMRproAmbassador

What would I do? Find a better doctor who knows a bit more about PMR.

It sounds as if you have never cleared out the existing inflammation properly - 10mg is a very low starting dose - and as soon as the actual underlying cause of the inflammation increases even a small amount you have symptoms. That also fits with being OK for a couple of days until the tiny drip of left-over inflammation builds up enough to cause pain.

One approach to using pred for PMR and tapering starts at 15mg and tapers fairly slowly to 10mg over a period of 3 months and then sticks at 10mg for a year before continuing the downwards trend - BUT governed by returning symptoms, which should always be the case:

rcpe.ac.uk/sites/default/fi...

It is based on a treatment time of at least 2 years but in the meantime there is a study from a top PMR expert that found that treatment for PMR lasts a median time of just under 6 years. Somewhat more than a third of patients are able to stop pred in under 2 years and half of patients still needed some pred at 10 years.

medpagetoday.com/rheumatolo...

This isn't a short term blip - it can be a properly chronic condition that needs management for a long time. And pred is only ever a management approach - there is no cure other than hoping the autoimmune disorder will burn out and go into remission in its own. It is said to do so for 95% of patients - but it may take a long time.

schmuppy
schmuppy in reply to PMRpro

Thank you PMR Pro - at first I thought my GP knew a lot - he told me he'd had 6 PMR patients over the years. But when he told me it should "last for six months" then I knew he hadn't done any reading up on the subject. He's been my doc for many decades, but neither of us expected this. But thanks to you and to the ladies and gents on this board, I have learned a lot and feel like I can manage better now. All the best!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Others have said it all - too low a starting dose - and consequently your inflammation has never been under control!

Find a doctor who understands your illness. In the meanwhile try 15mg for starters.

Sorry but you really need to start all over again.

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