Recommendations for pred. taper after beginning Actrema

[JASpmr]

Diagnosed with PMR May 2021, tapered from 30 mg/dy to 7.5 mg/dy by Aug 2022, but flared twice; the second time I adjusted the dose poorly and ultimately got control of the PMR at 22.5 mg/dy in May of this year. After discussion with my Rheumatologist I have gone onto monthly Actrema infusions to get the pred. dose down. I know several in the group, notably PMR-Pro have gone sucessfully to using Actrema. It would be very helpful to know how rapidly people have been able to taper after starting Actrema, and what experiences they had that might inform my approach to tapering the prednisone at this time.

[PMRpro Ambassador]

I'm on injections but my rheumy said to wait up to 2 months before even trying to taper and recommended only 1mg at a time - I have been on pred at long time! That has worked OK. I was able to get from 19 to 15 relatively soon and then slowed a bit. Again, down to 9mg was fine, at 7mg it felt a bit wobbly and the first time I tried 6mg was very rocky and I actually went back to 8mg for a short time before reducing to 7 and then trying 6mg again which is fine at present.

It doesn't work instantly and it seems to me to build up over time and after a year I feel very different to 6 months ago. It may be imagination but I think there was a relatively big change in the last couple of months.

[JASpmr in reply to PMRpro]

Thank you; that is exactly the type of information I can use and was hoping for. The pmrgcauk frequent questions discussion talks about reducing "quickly" but not whether quickly means days or weeks. My rheumatologist (a true delight) and I made a guess of doing a "normal" 1 mg/mo taper for two months to allow the Actrema to take hold, then to drop at twice that rate. That approach seems compatible with your experience, if slightly conservative. My two flares occured at 7.5 mg/dy, my poor handling of the second flare has cost me dearly in pushing me north of 20 mg/dy—so being a bit conservative seems wise.

And good luck on your taper—this is a complicated "disease" we're dealing with and the pmrgcauk forum and those of you coordinating the discussions are so valuable.

[PMRpro Ambassador in reply to JASpmr]

I suspect that when tocilizumab is used from the outset of GCA like DeepThought2, it is easier to reduce the pred fairly quickly but even so the tapers were over 6 and 12 months in the clinical trials,

[DeepThought2]

Dear JASpmr; my situation might be different as (1) I have suspected GCA and (2) I received Actemra (injections) directly after diagnosis and then could reduce my pred intake constantly from 40mg (starting dose) to 0 within less than 6 months.

[JASpmr in reply to DeepThought2]

Thank you; your taper pace is encouraging and hearing about your experience is so helpful.

[Rugger]

I had 2 years of Actemra and tapered the pred at 0.5mg/month, from 10mg to zero, which meant that the pred and Actemra stopped at about the same time.

My Rheumatologist then started me on Methotrexate, as she didn't want me to be on no medication for the PMR & GCA-LVV. However, after 6 months, I relapsed, so have had to go back on pred. In the UK, Actemra is 'rationed', so I have no chance of it being prescribed again, at the moment. I would go back on it tomorrow, if I could!

I would say "slow but sure wins the race", but we are all individual.

Best wishes.

[JASpmr in reply to Rugger]

Thank you for sharing your experience. Each story helps fill in the picture.

Jerel

[Sharitone]

I had had sevral attempts at getting below 15mg when I was given Actemra. The rheumatology nurse said to reduce by 1mg per mponth at first, which was comfortable, but at 11mg, I saw the rheumatologist who wanted to speed it up to 1mg per fortnight. It was ok at first, but at 4mg and 2mg I had hiccups with adrenals catching up - at least, I thinkthat's what it was. I got off pred altogether in 15 months, but am still on Actemra.

[PMRpro Ambassador in reply to Sharitone]

I think a lot of them totally forget the adrenal bit ...

[Sharitone in reply to PMRpro]

They don't even acknowledge it when the patient mentions it! Just looked at me as though I were mad.

[JASpmr in reply to Sharitone]

That's pretty scary. Thank you for sharing your experience

[Sharitone in reply to JASpmr]

Sorry, it wasn't meant to be scary. When you start to have adrenal problems, you just need to stay at that dose for a little while, or even go back up slightly, until it settles down. If it doesn't settle down, then you just need some more medical input.