Methotrexate / Actemra

You are the perfect person who needs Actemra or some other "suitable alternative" instead of prednisone. Actemra worked extremely well for me for stopping the pain caused by PMR.

Since I was on prednisone for a long time, my body got used to me supplying "synthetic cortisol" in the form of prednisone instead of the cortisol my adrenals should produce.

You probably aren't dependent on prednisone since you haven't been taking it. Actemra might actually work better for you than it did for me.

After I reached 3 mg of prednisone, I needed to stay on that dose for a long time even though Actemra was controlling by PMR symptoms. I had to allow time for my adrenals to resume cortisol production.

Hi, I just took my first dose of Methotrexate, and am curious, what were your side effects?
(If you don't mind sharing) Thank You.

Hi. I took methotrexate as an adjunct drug to my biologic for Rheumatoid Arthritis. It caused nausea and other mild GI symptoms initially, but they subsided in a week and I had no adverse symptoms at all. But over time it began to affect my liver function and I had to stop taking it. It was also preventing my body from developing antibodies to my biologic Humira, so of course I promptly did develop them - and had to change to a biologic that didn’t tend to produce antibodies. But I tolerated methotrexate well after the first week or so. Keep some peppermint candy and things you can settle your stomach with ( so with real peppermint, not candy with artificial flavoring only). Otherwise, sip seagrams ginger ale with real ginger.

Good luck!

I took methotrexate as an adjunct to prednisone. In my case, it was used as a steroid sparing medication. It was the first medication used in an attempt at getting my prednisone dose lower.

My experience with methotrexate mirrors your experience. It worked for lowering my prednisone dose. I tolerated methotrexate for about a year until my liver enzymes increased. It gradually made me nauseated to take it. Then I developed "morning sickness" because I retched every morning when I woke up. My rheumatologist scoffed at my morning sickness and she insisted methotrexate was working for me. I eventually decided to discontinue methotrexate myself.

A couple of years later, my rheumatologist wanted me to try methotrexate again. I took it for a few weeks the second time but I would retch whenever I attempted to put it into my mouth. I think it was an aversion to methotrexate.

I admire anyone who can take methotrexate because it does work for some people. Its effectiveness for PMR has mixed results.

My rheumatologist also wanted me on methotrexate for preventing my body from developing antibodies to my biologic Actemra. I think my expression was all it took for my rheumatolgist to decide not to start it for a third time. The idea was nixed and wasn't pursued. As far as I know, I haven't developed antibodies to Actemra. How do they test for that? Actemra still seems to work for me so I doubt I have developed any antibodies against it.

I have minimal if any side effects from Actemra and got completely off prednisone. Prednisone came with many side effects. I think there might be a greater risk when Actemra and prednisone are used in combination. This seemed true for almost any medication I took with prednisone for its steroid sparing effects. Fortunately, I was able to taper off prednisone relatively quickly after Actemra was tried.

When I developed antibodies to Humira it just ceased to be effective rather suddenly. I don’t recall that they tested for antibodies, but I think it’s an assumption borne of experience.

Is developing antibodies to Actrema a thing? I know some biologics don’t trigger antibody development. And if it does do you have other biologic options?

My rheumatologist seemed to think there was a risk of me developing antibodies to Actemra. I got the impression antibody formation against all biologics was a possibility.

We were talking about alternatives to Actemra at my last visit. Kevzara was mentioned as the first option.

There was more discussion about uveitis flaring up again. Actemra isn't supposed to work for uveitis. Humira should work for uveitis but it didn't work for PMR.

The question posed by one rheumatologist to another was what to do if uveitis flares up again. I was speechless by the conversation about inflammation pathways along with up and downstream regulation of this and that. The conclusion was IL-23 blockade might work too.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6538052/
The complexity of all this is truly amazing. I asked how my rhematologist knew so much. He said he had the same problem ... not with PMR but uveitis. He said when more than one autoimmune condition is involved, it is extremely difficult to optimally treat everything.

I guess that's why I'm so interested in people with multiple autoimmune problems. It took me years to grasp the idea it could be more than one thing going on.

I think PMR is still in the dark ages as far as treatment options. More prednisone like it is used for PMR might not be the best option if something else happens.

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

I am on 5mg of prednisone and 10 mg methotrexate and trying to get off prednisone. I have thought that methotrexate helped with few if any side effects for me. But the problem of profound weakness with cutting back on predn below 5 has me concerned. Does anyone have any ideas?

I'm been on the same combination for 5 months and am not able to go lower on the pred. The impression I get from my rheumatologist is that as long as my labs look good he is comfortable keeping me on these doses indefinitely. At my last appointment he brought up Kevzara as being the next option if labs or side effects aren't good. I don't have a good solution for you or myself. I have decided that I just need to be patient and take care of my health the best I can.

I wouldn’t presume to second guess your Rheumy. But what I will add is that when MTX is used with RA biologics they tend to work more effectively in combination than either drug does alone. I’m not sure if that’s true with MTX and Prednisone.