Methotrexate / Actemra

I tend to think you are
Correct that all biologics can produce antibodies. I just know my Rheumy at the time I developed Humira antibodies switched me to Enbrel “because that doesn’t happen with Enbrel “.

That said I found this on a RX site and it seems to describe otherwise. I will also say that Enbrel also quit working after a couple of years but it wasn’t a sudden change like I experienced with Humira.

Autoantibodies
Patients with RA had serum samples tested for autoantibodies at multiple time points. In RA Studies I and II, the percentage of patients evaluated for antinuclear antibodies (ANA) who developed new positive ANA (titer ≥ 1:40) was higher in patients treated with Enbrel (11%) than in placebo-treated patients (5%). The percentage of patients who developed new positive anti-double-stranded DNA antibodies was also higher by radioimmunoassay (15% of patients treated with Enbrel compared to 4% of placebo-treated patients) and by Crithidia luciliae assay (3% of patients treated with Enbrel compared to none of placebo-treated patients). The proportion of patients treated with Enbrel who developed anticardiolipin antibodies was similarly increased compared to placebo-treated patients. In RA Study III, no pattern of increased autoantibody development was seen in Enbrel patients compared to MTX patients

@pb50 Thanks for your comment. I will look into RA biologics and discuss with my doctor. Guess I hate to put anything else in my system. But if it would help it would be well worth it.

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?

I don't think all RA biologics work well for PMR.

Only Kevzara is FDA approved for PMR. Actemra is FDA approved for GCA but might work for PMR too. Both biologics were used for RA originally but I'm not sure how well they worked for RA. It seems they are trying to find other uses for both these biologics. They seem to work reasonably well for PMR/GCA and maybe not so well for RA.

@pb50 Thanks for your comment. I will look into RA biologics and discuss with my doctor. Guess I hate to put anything else in my system. But if it would help it would be well worth it.

@pb50 That is interesting! My regular doctor diagnosed PMR and Pred helped tremendously at first. He referred me to a rheumatologist who said it is RA. And she put me on methotrexate. I guess you can have both? But am really confused about what I should be treating.

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.

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.