Pred and Actemra question

[ngchgc]

At what dose of prednisone does one stay at when taking Actemra when things seem to have settled, but has not? GCA . It's one question that the Rheumy has not answered yet?

Bloods good, but feels like the flu, with shaking and severe weakness, tired and "no patience!!"

Rheumy told me to be at 10 mg in March, but that is not happening yet, yo-yo problems dropping down to 15 mg. I have finally got some 1 mg tablets and now going down in one mg a week to 15 atm. I noticed if I am having a bad day tapering in the past, "each and every time". I went with the Fortnight taper from 20 mg to 15 mg, back to 25 mg for a few days and was much better, then the dreaded drop again. .

Started my Taper from 60 mg in late December.

On my sixth injection, fortnightly.

[PMRpro Ambassador]

I'd say you were told to reduce far too soon and too fast. Actemra can take a couple of months to be fully active - and my rheumy who is very experienced in using it said to give it at least a month or two before even trying. And I was on WEEKLY doses at the start - which in the clinical trials did get a better result than the bi-weekly arm.

However - I'd also say that you are one of the people with a severe reaction in terms of steroid withdrawal. It isn't adrenal insufficiency yet, you are at too high a dose, it is just your body resenting such big changes in dose. Top endocrinology experts have said for years that no change in dose should be more than 10% of the current dose.

And of COURSE the bloods are good - the ESR and CRP can't be used in monitoring GCA when you are on Actemra because of the way it works. That is abundantly clear from the study documentation and a lot of other publications since.

The lower you get with pred the closer you may be to your destination - it is a 50:50 chance as to you getting off pred entirely with Actemra. And what your final dose will be can't be forecast.

[ngchgc in reply to PMRpro]

Thank you, It's a battle at times!

[RunnerJoe]

I agree that you have reduced very fast. I was diagnosed with GCA and PMR at the end of June 2024. I was on 60 mg of prednisone until August, and that's when I started weekly injections of Actemra. Once I started tapering down from 60, it took about 5 months to get down to 10 mg. I just started on 7 mg today, and so far everything has gone well with the taper.

[JanetGarrettN]

I have been under treatment for nearly 7.5 years on Prednisone. 8 months ago I finally gave in to Actemra INFUSION 1X MONTH. Initially my inflammatory markers rose. I was at 20 mg when starting 8 months ago and am at 6 mg . No problems other than 1 week after latest INFUSION contracted COVID-19 . Today 3.6.25 is day 9. Very sick. Saw Dr today with chest xrays which were okay.

Sounds like your Dr. telling you where he wants you to be over reducing as you feel comfortable is problematic. We've all encountered that. Good luck.

Janet