Actemra: Merry Christmas to all and Happy Holidays... - PMRGCAuk


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Akino profile image

Merry Christmas to all and Happy Holidays!

I do have a question: Did anyone ever used Actemra as the one and only drug for GCA and if so, how were the results?

And still I'd like to know if anyone in Canada got Actemra financed by Pharmacare?

Thank you and I hope you have a great time with the people who are most important to you! Merry Christmas, Monika

16 Replies
PMRpro profile image

I don't think it has ever been used on its own because it is not regarded as ethical - it is known that GCA inflammation responds quickly to corticosteroids and they are not so sure whether Actemra alone would achieve such a dramatic effect so reliably. They certainly didn't in the clinical trials - the pred was used as normal, the objective was to see if using Actemra made reducing significantly easier/quicker.

The primary reason for the high doses used in GCA is to avert the risk of sight loss - so they don't want to introduce any risk by messing with that approach. If there is any way to establish whether the Actemra works as quickly I'm sure they will investigate - it would be safe enough if used in PMR for example as all that would happen is the pain and stiffness would continue a bit longer if it didn't work fast. But GCA is a very different kettle of fish.’s good for me and allowed me to dose down my prednisone. Must do labs and make sure no organs are being hurt.

I keep hoping they do a study of short term Pred usage with GCA and Actemra from the start. Checking IL6 ESR CRP and symptoms every few days. Those whose markers and symptoms are normalizing, might be very quickly tapered off Pred, ideally before the Adrenals have shut down. A synthactin test would be important I suppose.

When I first presented to my Rheumy, she had lots of reasons to be suspicious about GCA in addition to definitive symptoms of PMR. I had very elevated markers, history of herpes zoster in my ear, odd pains in my head, but not the full GCA syndrome. I refused the biopsy partly out of principle ( I wanted radiology which makes a lot more sense to me, but it was and still is not available.) and because of the high false negatives rate of the biopsy.

I was fully informed about symptoms to look out for and told to carry 80mgs of Pred on me at all times and one baby aspirin. I was also told to call hospital immediately with any change in status, especially any visual changes.

I was anxious at first, of course, and vigilant. That was a year ago. I still follow the same medical orders. I don't think it would be unethical to perform the above experiment. Expensive, yes, unethical, not so much if patients are fully informed and emergency procedures are in place.

Just my humble opinion.

PMRpro profile image
PMRproAmbassador in reply to Hindags

" I wanted radiology which makes a lot more sense to me, but it was and still is not available"

Not sure what you mean by "radiology"? The only imaging that works is expensive and not generally available. It also has a fairly high radiation load to be used as a screening tool. And a study would have to be carried out to show how it compared with TAB - which with all its failings does give a 100% result when it is positive.

Ultrasound is an option instead of TAB but you require experienced operators.

I suppose it depends how you see the term "ethical". Patients can go to bed with full vision and wake up blind. If you KNOW someone has GCA - and only confirmed cases are included in clinical trials for obvious reasons - then it is medical negligence not to treat with the medication you know works.

Hindags profile image
Hindags in reply to PMRpro

I can never remember which of the scanning techniques have been used and compared to TA Biopsy. I do remember Ultrasound being used, but don't remember comparisons. I will do some research and get back to y'all re that.

I wasn't proposing using NO Pred in an initial study, just to start Actemra at the same time as high dose Pred and monitor closely with the goal of stopping the Pred if things look good before Adrenals down regulate.

I read the posts of people here who have tapered to low doses of Prednisone with Actemra who are stuck for longer than they might be on Pred because they are waiting for their Adrenals to kick back in. Of course, they might just have reduced to the lowest dose that controls their symptoms. But it seems so hard to know what the primary limiting factor is.

PMRpro profile image
PMRproAmbassador in reply to Hindags

Ultrasound and the TAB were compared in the TABUL study and found to be equivalent - in fact, in some respects U/S is preferable in that it can be used on other arteries such as the brachial artery.

The study starting pred and Actemra together has been done and has reported: the GiACTA study. It found tocilizumab/Actemra worked well and was the basis for it being approved by the FDA for use in GCA.

The primary limiting factor has to be the GCA symptoms - you can't taper faster than they are managed however you do it. While the patient is at above the physiological dose of corticosteroid there is no way of knowing how adrenal function is progressing - if there is more than about 8mg of pred present, the adrenal glands simply won't produce cortisol as they know enough corticosteroid to function is present. Not until the patient is down to about 5mg is there any point in doing a synacthen or ACTH stimulation test - but that only tells you if the adrenal glands are CAPABLE of producing cortisol when stimulated. It doesn't show if they actually are doing so in real time. Production is dependent on a range of factors involving hyothalamus and pituitary glands as well and any one of them may be out of kilter. The correct balance also takes time to settle down to work as normal.

Hindags profile image
Hindags in reply to PMRpro

Thank you so much for the full literature review. I. so amazed at how much you have at your fingertips.

I tried reading the article you cited about the types of GCA. Phew. Not easy going material. My hat is off to you.

PMRpro profile image
PMRproAmbassador in reply to Hindags

I've lived in the medical science world for most of my life - I translated German to English for many years as well. Occasionally the company I worked for would ask me to do non-scientific stuff, "it'll be really easy" they would say. Er, no! I had to think much harder...

I am on actemra ONLY for a year and a half BUT did take pred. For 2 months BEFORE actemra and overlapped for about 1 month. I feel no different before or after my infusion....but rheumy says I’d be having a lot more symptoms if I were not on the actemra.

Hindags profile image
Hindags in reply to Buddyk

Buddyk. How long do you think you will be on Actemra? What will be the guidelines for making the decision that it is OK to stop treatment?

That is a hard call to know when to stop treatment. I am soooo much better but still some tiredness and rhumey is willing to try stopping but I’m aftraid all my symptoms will return. She is leaving it up to me at this time. I’d like to hear someone else opinion on this.

Thanks for your reply. I'm curious about how you got off Pred so quickly without having an adrenal problem. I've read here that after only 3-4 weeks our

Adrenals stop working and one of the problems with discontinuing Pred quickly is that our Adrenals take time to kick back in. Some people attribute the extreme fatigue that some experience as they taper below 7mg. or 5mg. for instance, to be due to sluggish or erratic adrenal function and the need to wait for their adrenals to kick back into to proper function. My understanding of what I've read here, and my inference might be wrong, is that people wind up on Pred. at low doses for prolonged time, even after their PMR has turned off because they are waiting for their adrenals to turn on. Others do need prolonged Pred to keep their PMR at bay. I assume that that might happen with Actemra too, but that's another issue.

It sounds as though being on Actemra you didn't have trouble with adrenal issues after taking Pred for two months. What were your initial doses of Pred and how slowly/quickly did you taper or did you just stop?

Thank you for helping those of us contemplating Actemra at some point understand a bit more how it might work as a monotherapy.

PMRpro profile image
PMRproAmbassador in reply to Hindags

The longer you are on pred, the more difficult to taper off. After only a couple of months it wouldn't take long for most people - and anyway, everyone is different.

Bear in mind that you hear about problems from the people who have problems - not from the people who don't. There are quite a few people who get off pred reasonably quickly and don't have tapering problems due to adrenal insufficiency.

Hindags profile image
Hindags in reply to PMRpro

I want what they are having, a poor paraphrase from When Harry Met Sally, great movie.

Thanks....PMRpro it is easy to extrapolate from exceptions and go awry.

I've had PMR and GCA for about 2 years and I was on 50 mg of prednizone at one time. I managed to taper down to 7.5 mg but I've been stuck there for about 8 months with my rheumatologist being reluctant to reduce the dose for fear of a flare. I've been on Actemra for two months and today, for the first time ever, he looked at my blood work and said it was very good. So I've got the go ahead and I'm going to try tapering to 5mgs of prednizone over the next two months. Hooray!

The only issues I've had with Actemra are:

1. It's pricey. Luckily I have been able to get patient assistance but it took a lot of time and effort to get the co-pay organised. (I'm in the US.)

2. I was a little nervous about injecting myself at first, but I'm happy to report it's become routine now.

3. It makes you prone to other infections and I went down with cystitis the first week I took it. I had to come off it while I took antibiotics.

I hope you manage to get it financed and the results are successful for you too.

How did you do or how are you doing with Actemra? I just started a month ago with the self injections. Was concerned, but now easy peas-y. Cost is outrageous but somehow I am subsidized? Also decreasing Prednisone 8.5 now and taking Methotrexate. I to wonder how long this all is going to take.

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