GCA prednisone vs. actemra infusion therapy

Does anyone have any experience with methotrexate?
I have been on actemra infusions 17 months and have had 2 flares. The most recent flare was this week, down 5mg and got symptoms back. Saw by dr today and he tells me that he thinks actemra is working but im questioning that because I've had 2 flares. Now he wants me to try methotrexate. I read the side effects of that and that gives me pause. There are so many side affects to all of these drugs it's just unbelievable. Any suggestions or experience is appreciated.

I am here to ask the same question. I’ve been on Actemra infusions for 14 months, and tapering prednisone which I have been on for 3.5 years.
I had a flare 5 months ago, had to increase prednisone to 35 mg to get it under control. Now down to 25 mg and can’t get it lower without flare, and my (new) rheumatologist has prescribed methotrexate, which I will start this week, along with increasing my dose of Actemra. I am hoping the methotrexate dose (15 mg/week) will not be high enough to cause significant side effects.

I hope we will get some responses on this. I will post my experience when I have more information.

@krueg and @julie4868

Being on Actemra infusions for 17 and 14 months respectively seems like a long time. Actemra won't work for everyone. By contrast, I was on prednisone for 12 years and wasn't able to taper my prednisone dose much below 10 mg. During much of the 12 years my prednisone dose was closer to 30 mg.

My rheumatologist said when I started Actemra that I should start to feel some improvement in 3 months. After 3 months, I wasn't so sure I felt any different but I sure was able to easily taper my prednisone dose lower to 3 mg without a flare. I didn't feel better until I got off prednisone completely.

It took me a year to taper off prednisone completely. I haven't had any flares of PMR while on Actemra. I did have a flare of another autoimmune condition. My ophthalmologist took me off Actemra in order to try a different biologic. I requested to go back on Actemra because Actemra worked better for me.

Given what both of you have said, I would be inclined to believe that Actemra isn't working well for either one of you. Actemra is supposed to have "robust steroid sparing effects" for people with PMR. You might not be able to taper off prednisone like I did but you should be able to achieve remission and not have flares.

Methotrexate is frequently given along with Actemra so it might make a difference. I personally didn't need methotrexate to taper off prednisone. I have used methotrexate and prednisone together with some success. I'm not so sure Actemra, prednisone AND methotrexate is a good idea. Taking two immunosuppressants is bad enough but taking three medications for PMR seems unwarranted.

This is just my opinion and I'm not a doctor.

DadCue….Thanks for sharing your experience. I see now that I forgot to specify that I have GCA (and PMR). I agree that taking 3 immunosuppressants does not sound like a good thing, but inflammation from GCA is definitely not. And the plan is to continue tapering prednisone, hopefully discontinue it or at least get to a low dose.

As far as I know, the evidence available for choosing the most appropriate steroid-sparing agent in GCA is between Tocilizumab (TCZ) and methotrexate (MTX).

TCZ is probably first and the next best agent for steroid-sparing effect might be MTX.

I don't think there are any studies that support using both TCZ and MTX together as steroid-sparing agents when someone is still needing high doses of prednisone. I could be wrong ...maybe there is some updated information out there somewhere.

At the very least, I would ask your doctor about the safety of using all three of these medications: prednisone + tocilizumab + methotrexate together. If you are able to get off prednisone quickly on this regimen that would be good. TCZ + MTX is okay if you are off prednisone.

"Treatment failure with tocilizumab has been defined as the inability to achieve remission by week 12 or relapse between weeks 12 and 52."
https://openrheumatologyjournal.com/VOLUME/13/PAGE/61/FULLTEXT/

I too forgot to mention that i have gca and pmr as well. Please let me know how it goes for you on methotrexate. I am Leary of taking so many drugs as well. How can ones bidy handle all if this. I'm still trying to decide on what to do. I wish you luck

I will give an update when I have something to relay…
Good luck to you as well!

I have GCA and am now on 12 mg of prednisone. Concerned that when I go to 10 mg or below I will spike. Has anyone gone below 10 and not spiked?

Thank you, Susan

Hi Susan, I got all the way down to 5mg and just had a major flare. I had to go back up to 30mg and still have some symptions so I might need to go back up to 40mg and start all over. This happened to me in late April of last year. Got down to 10mg and had a major flare. My personal opinion we went too fast. I need to go really slow once I get to 10mg. Of course everyone is different, but I'd rather not be in such a hurry to get down and then have this happend and have to go back on high dose. I'm getting know where. I told my rheumy we need to slow it down. It will be 2 years on May 5th that I have been on prednisone, which is not good. This is an up and down journey and is very stressful and disappointing to say the least when this happens. My advice is to listen to your body and if you have any symptons do not push it. Good luck to you and keep us posted on how you are doing.

Can you take Actembra shots if you have a cough?