Difficulty in Tapering

[PatB1948]

I was diagnosed with PMR and suspected GCA in April 2017 and reduced from 40mg Pred to 15mg fairly easily in first few months. I have had several ups and downs but managed to get to 12mg in February 2018 but I had trouble when I got to 11mg and the shoulder and hip pain came back with a vengeance. I went up to 15mg temporarily and then started to taper again. I have struggled to get below 11mg and have been doing the DSNS taper since August. This week I had 10.5mg on Monday and then 11mg for rest of week. My shoulders and hips were a bit sore last week so perhaps I should have stayed at 11mg for a bit longer. Yesterday and this morning my pain is back and I took an extra 2.5mg this morning. Can you give me any advice please.

[PMRpro Ambassador]

You are not reducing relentlessly to zero - you are looking for the lowest dose that keeps the symptoms at bay and gives the same level of relief as the starting dose did.

That may vary over time - if you were to plot a graph you would see a general reduction over time but with humps where the disease activity ramps up a bit for some reason (and there are many) where you needed to go back a bit and reassess. Or they might be because you overshot and didn't listen to your body.

However slowly you reduce you will not get past that point at any given time - it isn't magic, it is a pragmatic factor. If you try to force below that dose the likelihood is you will get a flare of symptoms and have to go back up. When you meet the same result at a similar dose more than once it is your body saying hang on, I'm not ready to go lower yet. The slow approach minimises such events but it can't eliminate them 100%. You are being told quite formly that 11mg is where you need to be for now - it doesn't mean you won't get lower, just not yet.

If it were me I would take 15mg for a few days - if that works really well and you feel good then you can immediately drop back to 11mg and see if that really is enough. But be prepared that it may be 11.5mg you need - there have been several comments recently about the difference 1/2mg can make.

And then I would stay at 11mg for at least a month, probably 2 months, before trying a 1/2mg reduction again. But it might take longer, it might mean several tries before one finally works. It took me over 4 years to get to under 10mg reliably - and I only have PMR, not GCA. You will get there - but only with patience.

[PatB1948 in reply to PMRpro]

Thank you, PMRpro for your constructive comments. I have taken it all on board and will follow your recommendations. I shall just have to be more patient and let it take as long as it takes.

[DorsetLady PMRGCAuk volunteer in reply to PatB1948]

Your last sentence needs to be burnt into your brain! In the nicest way - trouble is, it’s not always easy to follow.

But try...and good luck.

[PMRpro Ambassador in reply to PatB1948]

We keep saying - if you learn nothing else with PMR, you will learn patience!