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← Return to Methotrexate / Actemra
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Let’s see. I was diagnosed in 2012 and put on Humira for 3 years then Enbrel for 4, then Remicade and I’m on my 4th, soon to be 5th year.
The thing you have to care for is that you can’t always do a rewind if you try to wean off and symptoms increase again. Oh you can go back to starting dosage - but you may not get the same result. I swear you can’t even discuss it or the RA Gods hear you. I had been well controlled for almost 3years and in December I raised the question of should we decrease dosage or change interval between infusions - the Rheumy said let’s not tempt fate but we can discuss in January. And then in early January I had a bad flare and took Prednisone for the first time in 15 years. And had just the very best experience. Euphoria, energy, no pain anywhere.. so awesome. 😁 But all good things end so …. Back to reality. Which I expect to always include an anti TNF of some flavor.
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No doubt the prednisone was awesome if you haven't taken it for a long time. Pity the awesomeness doesn't last forever ... for me at least. I think people develop a tolerance for prednisone.
I have been off Actemra twice already. The first time was for 3-4 months because the worst kind of uveitis called panuveitis flared up as soon as I got off prednisone. No PMR pain ... just uveitis. My ophthalmologist stopped Actemra and started 60 mg of prednisone and added Humira. This was a new ophthalmologist for me and was the "uveitis specialist." . She thought Humira was optimal for uveitis and said I should have been placed on Humira years earlier because of well documented uveitis flares. I said prednisone always worked for me for uveitis. She discounted the fact that Actemra for PMR got me off prednisone. She said getting uveitis under control was the priority.
Uveitis went into remission on the regimen of Humira and prednisone except when I tapered my prednisone dose back to 15 mg again all the pain returned. I could not decrease my prednisone dose any further. My rheumatologist wanted me to "give Humira a chance" but eventually allowed me to pick which biologic worked best for me. I choose Actemra to the chagrin of my ophthalmologist.
My rheumatologist increased my injections of Actemra to weekly instead of every two weeks. That worked well and I got off prednisone again.
The second time Actemra was stopped was because Actemra was being diverted to seriously ill covid patients and was in short supply. I went back on Humira to prevent uveitis but the pain returned and I needed prednisone again. I don't ever get euphoria or anything close to feeling awesome on prednisone anymore.
I was off Actemra for 6 months the second time when supplies improved. Actemra was restarted as a monthly infusion instead of injections. That's where I stay at least for now. I think the infusions work better than the injections.