Actemra at 3mg prednisone for GCA: Hi, I’m... - PMRGCAuk

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Actemra at 3mg prednisone for GCA

Eliza4 profile image
13 Replies

Hi, I’m currently down to 3 mg of prednisone from 60mg almost exactly a year ago. My bloods are a bit up and down but mostly good. I’m pretty active but get tired in the afternoons and pretty much rest from then on. I have some fleeting temple pains and other general aches consistent with the pains at the onset of GCA, but not as intense.

My specialist is referring me to a rheumatologist for advice regarding Actemra. I’m wondering how it will benefit me as my tapering is generally going well. I guess I’m asking for some opinions.

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Eliza4
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13 Replies
SheffieldJane profile image
SheffieldJane

You are in an enviable position being down to 3 mgs after 1 year but you are pretty symptomatic and that maybe a warning of an impending flare . It is very unlikely that GCA is done with you after one year. Actemra/Tocilizumab could save you from another year of higher doses of Pred and the attendant side effects. This is certainly worth a discussion with your Rheumatologist and serious consideration.

Eliza4 profile image
Eliza4 in reply to SheffieldJane

Thank you. I agree that It’s unlikely that the GCA has gone into remission- I feel as though it’s lurking in the background.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Eliza4

Highly unlikely to be in remission...and the symptoms you describe sound exactly like the beginnings of a flare......

Eliza4 profile image
Eliza4 in reply to DorsetLady

Thanks. I don’t think I’m in remission either but the problem is, this is the pattern that I’ve experienced throughout the year. Nothing gets worse, and it’s often better - very confusing.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Eliza4

Yes it is, but it sounds as if your illness actually need your current dose...it won't always... but does for now.

I do wish some Rheumies would just accept that's how it is, the aim is to find the LOWEST dose that controls symptoms, not to get to zero whatever!

...and not pressurise patients to add in another drug - which I really don't think is necessary once you are below 5mg...unless you've been at that level for years - which you obviously haven't.

Eliza4 profile image
Eliza4

Thanks for your input, it’s very helpful. The specialist I refer to has been treating me from the beginning. He’s had some experience with treating GCA . I think he’s taken me as far as he feels comfortable and would welcome some input from a rheumatologist.

jinasc profile image
jinasc in reply to Eliza4

I am curious, can you explain what type of Specialist please?

Eliza4 profile image
Eliza4 in reply to jinasc

Hi, the specialist I referred to is the head of infectious diseases at the hospital where I’m being treated. He has had some experience with treating GCA.

PMRpro profile image
PMRproAmbassador

I am left to ask what your specialist is on!!!! After a year with GCA you would expect to be at something more like 10mg - this isn't "difficult to manage" GCA, just hastily managed GCA.

This

rcpe.ac.uk/journal/issue/jo...

is a much more usual approach to pred in GCA - which is rarely gone in 2 years though it can be - and is very liable to flare in the first 18 months. I think you have just been reduced in dose far too fast and you are now showing the signs you have gone too low for now. You aren't managing at 3mg but if you can do better with a dose lower than 10mg at this stage I personally would be reticent about introducing Actemra because it, too, is no innocent when it comes to adverse effects.

At what stage did these niggles start to appear - since I assume that you didn't have them earlier?

Eliza4 profile image
Eliza4 in reply to PMRpro

Thanks. I am definitely reticent about introducing Actemra as I think I am going ok without it. The problem is, I have difficulty distinguishing between GCA and side effects of prednisone. Thanks for the link you sent. From my understanding, I should probably stay on a low dose of prednisone for up to another year.

PMRpro profile image
PMRproAmbassador in reply to Eliza4

By this dose the side effects should be minimal - and certainly very little that could be confused with GCA. What sort of things do you mean?

Eliza4 profile image
Eliza4

Thank you. Do you suffer many side effects from Actemra?

Eliza4 profile image
Eliza4

Hmmm. Good point. I get very tired and slightly nauseous after a couple of hours of physical work (ie working in the garden). I spend the rest of the day resting or doing passive activities.I get headaches in the temple area, but only fleeting, they rarely last longer than a few minutes. Also fleeting pain in the jaws.

I have painful joints in the shoulders, again only fleeting and not debilitating.

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