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← Return to Methotrexate / Actemra
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Thank-you. I didn't know what to expect if Actemra ever stopped working. I thought it would gradually lose its effectiveness. I don't worry about it too much but I'm not sure what will happen if Actemra didn't work anymore. Have you been on two TNF inhibitors and now on your third one in 5 years?
Another question ... are people with RA content to be on a TNF inhibitor as long as it is working without ever trying to stop it. I was told Actemra could be easily stopped but I would probably need prednisone again. I'm now happy that Kevzara might be another option.
People with PMR are basically given prednisone and more prednisone. Then we are told to wait until PMR goes away until prednisone side effects set in. Then there is a rush to be off prednisone and that is difficult to do quickly.
Now that I'm off prednisone ... I never want to go back on prednisone unless it is short term until something else works. Unfortunately, there doesn't seem to be many options other than prednisone for most people with PMR.
My mindset is to be off Actemra sometime in the future. My rheumatologist says that might not be possible. Should I just give up thinking I might be "medication free" again?
Replies to "Thank-you. I didn't know what to expect if Actemra ever stopped working. I thought it would..."
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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.