Unsure about my correct dose level

[Lickle]

Hi All,

Happy New year fellow sufferers.

I have been coming down very gradually and was at 5mg and felt ok for a few weeks. I started tapering down to 4.5mg using a pill cutter to cut one of the 1mg and 4 single x 1mg, or cut a 5mg in half and add 2 x 1mg for couple of weeks. However, I started to feel achey in my shoulders and sort of arthritic in my hands so went back up to 5mg.

However, my right foot was also having pain about 2 weeks back. I wasn't sure if it was PMR or I'd twisted it or knocked it. I put up with all of them as I was just stiff and not really in pain. Then the bone on my foot leading to the big toe did feel tender as if I'd kicked something. Eventually, I sussed that the foot pain was probably a return of some Gout, so took the Colchisine 500mg by 4 per day for 3 days and the Gout has gone at last.

My PMR though seems to be slightly worse again, I'm not sure if its a flare caused by the Gout or the reduction in the dosage? I take the Pred at night before bed after 11pm and generally can move about ok once up & showered but my fingers and shoulders still feel a little stiff, and I'm slow to stand up when sitting at the laptop too long.

What would you senior members here recommend? Should I up the dose by 5mg for a week and then drop down to 6 or 5mg again after a week/10days?

I still work most days but it is usually just driving a short way and showing off properties or doing a few tests and a tick box report on the mobile phone after. Walking too far seems to just be a little painful.

[PMRpro Ambassador]

I think your approach sounds a good start - use the flare protocol and drop back to 6mg. I think the PMR got a bit poked by the gout - and a bit more pred will help that too as it is an alternative treatment for gout. Then taper 1/2mg at a time but no need to be in a hurry, not at this time of year!!

[Lickle in reply to PMRpro]

Thanks for confirming that PMR Pro. I was unaware that Pred is an alternative treatment for Gout. As at 75 the first time I got it was at the beginning of my PMR journey. It was just before getting diagnosed with PMR that I had my first spell of Gout and the doc prescribed the Colchisine, so I kept some of the tabs in case of another bout. The Doc said that if I got it more regular he'd prescribe a stronger tab for the gout. I can't help feeling that somehow its tied in with my PMR.

Over the past few months I've had lots of tests for anaemia and despite 2 CT scans, Colonoscopy, Urinoscopy, & the one down the throat, the last suggestion was as you predicted previously as "Chronic Illness Anaemia." It is so depressing at times as I constantly fall asleep suddenly, and am still trying to taper the prednisolone.

I'm so frustrated as I was getting on so well fitness-wise when I first went on the pred, my workouts were great at 15mg before the first flare hit. Unfortunately the steroids mask so much, I never know when I've overdone it. So now am back to doing nothing much.

[PMRpro Ambassador in reply to Lickle]

You can get to do more but you do have to build up to it very slowly and be very aware of your limitations. Skinnyjonny started running again while still on pred - though to be fair, he was 20+ years younger! You also have to balance the pred dose - don't go mad about trying to taper. It is all about quality of life - a bit more pred often achieves a lot on that score.

[Lickle in reply to PMRpro]

Thanks,

I am beginning to understand that last sentence!

Happy New Year,

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro- and it is a balancing act… and ‘more haste less speed’ applies to PMR as well as life - in fact - more so….