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I've had GCA& PMR for 3 years started off on 60 mg preds, then within 3 months Dr. Reduced preds rapidly & put Me on Actemra infusion once monthly 5 months into it I had a flare so we doubled the dose, all went fine then this last March I was in the hospital 2 weeks with Mrsa & Pneumonia then home to recuperate another 2 months went by & I missed My Actemra. I had no pain & no sign of either illness so Dr said Im in remission. I still feel good except if I get tired, it seams to effect My head & I have to stop & lay down, hard to explain, feels like My head swells or fills up with air, I just can't go any longer. I don't know if that's the GCA or what. While I was in the hospital & having many tests they found I have a 4.7 aorta thoracic ascending aneurysm caused by GCA, so everyone make sure Your Dr. tests You for that. Now I'm feeling so much better but scared silly about this Aneurysm. Would love to hear from someone with same. And after being in remission5 months now, can I have another flare or is it just over. Drs here in California don't know much about GCA. Anyone have any answers for Me? Thanks all. Don't know what I would do without this site...

1 Reply

They will monitor that aneurysm and if it increases in diameter they will do something about it - at the moment it is well within the reference size which is 5.5cm for men and a bit less for women. At least they know it is there - if they didn't know you would be at far more risk as it could grow without you even knowing it was there until it was too late. There are things that can be done - from major surgery to stenting.

As for "will the GCA come back" - I doubt anyone knows what happens longer term after using tocilizumab/Actemra as there will only at most be patients who are a couple of years post treatment yet.

But I'm delighted to hear how well it worked for you.


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