Flare on Actemra

[NEPatriots12]

I’ve had monthly Actemra infusions since December and added leflunomide in February for primary diagnosis of PMR, secondary RA due to positive CCP test.

(I was misdiagnosed as RA only for 2 years, finally figured out a year ago, so a 3 year journey thus far. Enbrel, Humira and Orencia were all ineffective.

Since on Actemra I was able to slowly reduce medrol from 12mg to 5mg, then boom, major flare last week. I went back to 6mg 2 days ago and beginning to feel better.

Just wondering if Actemra users have experienced flares, hoping it is not ineffective as Rheumatologist feels that it is the right med for me because of the dual diagnosis.

Thanks,

Sue

[Hidden]

It's not really used in the UK for PMR NEPatriots, so there may not be many regular users. But if you scroll down to related posts at the bottom of this page, there are several discussions of actemra. Hopefully someone will be able to help.🌻

[NEPatriots12 in reply to Hidden]

Thanks, I will check out the Actemra posts

[NEPatriots12]

Thanks for the reply

I’m assuming the flare is PMR as pain resurfaced in all the typical areas. Had quite the headache too so Dr kept asking about blurry vision but I didn’t have that.

This inflammation is a tricky opponent

[NEPatriots12]

Thanks DadCue,

Glad you enjoyed your visit to Massachusetts, we are fortunate here with all the history plus access to the ocean and mountains.

I am a Celtics fan too!

[PMRpro Ambassador]

During the clinical trials for GCA it was found that only about half of patients were able to get off pred entirely by using Actemra and for most of the rest it merely took them to a lower dose of pred. This was stated very clearly in the documentation and any doctor who had read it should be aware of that AND have told the patients that. The same is likely to apply for PMR since they are believed to be the same disease process, although there is also a great deal of heterogeneity in the experiences.

Actemra does not replace pred in PMR/GCA, it is just a particularly effective but also particularly expensive steroid sparer. It is pretty good stuff - but even it isn't perfect.

[NEPatriots12]

Thanks PMRpro,

Very helpful.