Actemra???

[RivieraWelter]

I am in California and was diagnosed with PMR in May of 2021 and, a month later, with GCA. I have reduced to 15 mg of prednisone (several times) and seem to be stuck there. My rheumatologist is suggesting monthly infusions of Actemra so that I can reduce the prednisone. I have read up on this drug (tocilizumab) and it seems like a good thing. I am curious about those of you on the forum who have used this drug and what your experiences have been. Thanks in advance!

[nallufl24]

I’ve been on Actemra for 8 months. I felt like a new person right away. I was able to get from 35 mg prednisone to 0 in 7 months. However, I’ve always high high cholesterol but it went thru the roof between prednisone and the Actemra. I’ve also read where some people can gain a little weight. It’s not common but guess where I fall! Of course I’m one of those who gain. Other than that it gave me back my life. I know it’s not a cure but I’ll take it anyday over prednisone

[PMRpro Ambassador]

It isn't necessarily a cure but there nearest there is yet: it is hoped that after a time of Actemra the process that creates the IL-6 cytokine that causes the inflammation and which is stopped by the Actemra, will die down as a result. Most people with GCA who are on it are on weekly injections because that is what was looked at in the clinical trials but there are some on the form on the infusions which is what is used in RA.

[winfong]

Try a search. This question seems to come up every couple of weeks or so.

[Preacherball]

I am on weekly injections of Actemra but the jury is still out on its effeciveness for me. I was diagnosed with GCA in June of 2021. My primary symptoms are respiratory (sore throat, sinus, cough) which is atypical, with, from what I have read, only about 4% of those with GCA presenting in this way. I first did a 6 month taper off prednisone, while taking Actemra. After stopping prednisone in January, there were supply issues with Actemra, so I missed several injections. By early March my GCA returned with a vengeance, although, with my symptoms, I wasn't sure if it was really GCA, covid, or just some other viral infection. Well, it was GCA so I was back on steroids at 40mg. This time we did a faster taper along with Actemra. completing prednisone in mid-May. I continued with my weekly Actemra shots, but by mid-July my symptoms were back. Again I wondered if maybe it was just a viral thing, but by now I was beginning to see the pattern of symptoms and understand this is the disease. This time my rheumatologist recommended I start on 10mg pred. for 3 weeks, then 9mg for 3 weeks, then 8 etc., until I get to 5mg., where I will stay until I see him again in December. I continue my weekly Actemra injections. So, it's a lot of trial and error to see what will work to control my symptoms and avoid future flares. I'll keep everyone posted.

[PMRpro Ambassador in reply to Preacherball]

It sounds as if your rheumy is either unaware of or ignoring the fact that Actemra only works 100% for half of patients - that was established in the clinical trials. This is because GCA has at least 3 identified underlying mechanisms of inflammation but only one of them is addressed by Actemra which is a highly specific IL-6 inhibitor. Depending on whether or how much the other two mechanisms are involved in your GCA you may require some pred to manage the inflammation due to them. Most patients on the trials got down to about 8-10mg/day pred, so still a considerable steroid-sparing effect.

[Preacherball in reply to PMRpro]

I believe he's aware. He did mention that some patients may need to stay on a low dose of pred., even with Actemra. I'm at 10mg now and doing much better, hoping to taper to 5 over the next 15 weeks, and then stay there for awhile. In all 3 of my flares, my symptoms did not return until several weeks after I was off pred., so perhaps a low dose will be what's needed for me.

[Sophiestree in reply to PMRpro]

Can I ask what the ' other two' are alongside IL6?Always good to throw that at my next appt when I'm told off for not getting to a lower dose.

[PMRpro Ambassador in reply to Sophiestree]

Bit of a headache inducing read:

bmcrheumatol.biomedcentral....

There is probably more recent stuff if I looked harder.

But T-cells are almost certainly involved in the adaptive immune response and probably B-cells but not entirely clear yet how. Plus very possibly other things in the inate immune response. TCZ is good - but not perfect.

[Sophiestree in reply to PMRpro]

thanks for the link

[Sharitone in reply to Sophiestree]

If I try knowing anything, I get slapped down. Have to introduce it very carefully, like wrapping a dog's tablet in its food.

[Sophiestree in reply to Sharitone]

Yes, I have seen that. We shouldn't have to play that game, but we do.

[Sophiestree in reply to Preacherball]

Interesting Preacherbell, you had similar symptoms to me which is likely why they took so long to diagnose me. Main ones being Sore throat, sinus, and glands plus headache and permanent low grade fever with night sweats other pains but those overrode them. Of course as I was bang in the middle of covid it was always assumed that is what it was. I still get the same symptoms popping up and now wait to see if they go or if I need to up my dose of pred.

[Preacherball in reply to Sophiestree]

Yes, when I first started having symptoms I had a low grade fever for a couple weeks which did not go away. I wrote about it in my profile, but my primary doc couldn't figure it out, so I was referred to rheumatology. That doc suspected right away it was GCA. What's been confusing with the flares I've had is that I've had the "cold " symptoms beginning with a severe sore throat, but no fever. So, at first I wasn't sure or convinced it was GCA. Again, like you, thought it could be covid. But, tested negative. It's taken 3 bouts with this GCA inflammation, but now I at least know what I'm dealing with. It appears I'm going to need to remain on some low dose of prednisone, along with TCZ (Actemra) as all 3 times I finished my pred. tapers, I've had flares. Now on 10mg, tpaering to 5 mg over next 15 weeks, and staying there for awhile.

[Sophiestree in reply to Preacherball]

Yes, I have come to know what is what now. My sore throat and glands are definitely not a cold, just a small flare. I try and ride them out to see what happens before I take more pred. Often I have taken extra for about 4 days and that seems to have sorted it. Don't get the fever or night sweats any more though

[Preacherball]

Thanks for the reply. I've learned a lot about this disease and how it affects me over the past year. It's been a bit of a roller coaster trying to get it figured out, but, as I read other posts, this seems to be fairly common with GCA and PMR. It's not a one size fits all treatment, which makes it more of a challenge for docs and patients to see what works for each case. A year ago I naively thought I'd either be done with this, or, at most, just be taking my weekly shot of Actemra. The disease had other things in mind, and I've had bumps along the way. Hopefully, I'm now on the right track, but at least I know what to look for if things start going south again.

[Sharitone]

I've had problems after being put on a very rapid reduction course with pred, BUT I've got well below 15mg for the first time, so I am very happy!