Reducing too quickly?: Hi everyone, I've not... - PMRGCAuk

PMRGCAuk

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Reducing too quickly?

PatB1948
PatB1948

Hi everyone,

I've not posted on here for a few weeks. You may remember that I had a PMR diagnosis at the beginning of April and started on 15mg Pred which seemed to work. I then had pain in temple, headache etc and saw ophthalmologist and rheumie who gave a suspected GCA diagnosis and and increased the Pred to 40mg. I took this dose for four weeks and as instructed, went down to 30mg for two weeks with no problems. Last Saturday, I reduced to 20mg and up till yesterday (Tues) all was well. This morning, however, I have pain again in my shoulders, upper arms and hips, also very tired and stiff, slight pain in temple.

What do you think? Should I increase maybe to 25mg or wait another few days? Your comments would be welcome.

Pat

7 Replies
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PMRpro
PMRproAmbassador

I wouldn't have counselled a drop from 30 to 20 in one go - that's a 33% drop, rather excessive when tapering advice says not more than 10%!

A study showed evidence of inflammation in GCA even after 6 months at high dose pred (above 20mg) and the better tapering advice in the literature suggests a tape that keeps the patient above 20mg for at least 4 or 5 months. Relapses/flares (whatever term they are using) are common in the first 18 months after diagnosis of GCA - and are almost always due to reducing too fast and too far.

If it were me I'd definitely try 25mg. And I'm not sure I'd wait - if a flare gets going you may end up back at 40mg.

PatB1948
PatB1948 in reply to PMRpro

Thanks, PMRPro, I thought maybe it was too big a drop. I'll go up to 25mg tomorrow morning, I take it at approx 4am.

PatB1948
PatB1948 in reply to PatB1948

Decided not to wait until tomorrow and took the 5mg right away after replying to PMRPro. As it is the enteric coated Pred I take and they take longer to act, I felt much better by around 4pm, also gave in and had a nap which I do not like doing n case it affects my sleep at night.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PatB1948

Good.

Was going to make same suggestion as PMRpro. I went 30mg -25mg - 22.5mg - 20mg. 10mg drops are okay for some at much higher doses, although I did 5mg from 60mg down to 30mg - but not once you get to the level you're at now.

Despite what docs may want , it's not a race, and slower is better - as many have discovered - and not always the easy way!

Thanks DL, I'll take your advice and drop by the amounts you suggest. At last visit, GP said not to go back to see him for 4 to 6 weeks unless I felt I needed to. I am quite happy to do the reduction on my own as I know he will push me to get off the Pred asap.

These ladies all know more than me, however the one thing I really did notice was on day 4 after a reduction I had pain then it seemed to fade away over day 5 and 6. But that is just me :) Good luck with it all

Thank you, Suziq123, have gone up to the 25mg dose and feeling much better today. I think a 10mg drop is too much at a time so will do it more slowly and argue with GP if necessary. I'll bear in mind your experience next time I am due to reduce.

Pat

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