Quick question. I have been told by my rheumatologist , that I will be on Actemra and 5mg pred for the rest of my life. I visited an eye doc for some problems with my eyes, and he was very surprised to find out I was still on prednisone after 2 years of my diagnosis. I know things are different over here in the USA, but I can't find anything that says that once you have GCA, you are forever on pred. My doctor is adamant about me staying on the Actemra and pred. I specifically asked him at my last appointment and he said something to the fact that it is now the new treatment for this disease. Does anybody have any advice on where to find this information? If I could get off the Actemra at least, I would be okay with that. The cost of it is ridiculous.
Thanks so much for any help or guidance in steering me to some solid information that I can educate myself with before my next appointment.
Here in the U.K. GCA patients are allowed one year of Actemra. I gather that it is incredibly expensive. I have been on Pred for well over 4 years (PMR). I asked my Rheumatologist what happens after my one year is up. She said that interesting research is going on for the drug treatment of GCA. I still appear to need around 10 mgs of Pred or my symptoms creep back. I am as puzzled as you are. Do you feel that Actemra has helped you to reduce Pred.? Do you feel well on it?
I'm not sure if it has or not. I've been on it for about a 1 1/2 years. I'm thinking that when I started it, I was probably on 30 mg of prednisone. I have been down to 5 mg for the last week and feel fine. Maybe a little more tired, but absolutely no symptoms of GCA or adrenal glands acting wonky. It has taken me so long to finally get here. I feel so good. Do you think I'm looking a gift horse in the mouth with questioning the life long pred/Actemra? I'm just so confused.
No not at all. I don’t really understand exactly what Actemra brings to the table. I feel pretty viral all the time but don’t have typical GCA symptoms unless I try to dip below 10 mgs Pred. and then it just tends to be a headache. I wonder if it confers protection against the harmful effects of unchecked inflammation. I had thought that I was almost out of the woods on 3 mgs of Pred before my GCA diagnosis. The potential side effects of Actemra sound pretty grim but doctors seem much more anxious about Pred side effects. I had developed steroid induced diabetes that has now normalised, high blood pressure, still a concern and small cataracts. All from Pred I imagine. 5 mgs is a fairly low dose, almost negligible for side effects and probably giving protection against a relapse. Nothing I have read suggests that Actemra is intended as a lifetime drug. I’d be interested to learn more.