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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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.
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.
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.
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.
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.
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.
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?
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.
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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