Reducing too quickly?

[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

[PMRpro Ambassador]

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 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 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 PMRGCAuk 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!

[PatB1948]

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.

[suziq123]

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

[PatB1948]

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