Connect
← Return to What to tell adult kids? Dad diagnosed with giant cell arteritis (GCA)
Discussion
What to tell adult kids? Dad diagnosed with giant cell arteritis (GCA)
Polymyalgia Rheumatica (PMR) | Last Active: Apr 15 10:19pm | Replies (22)Comment receiving replies
I was diagnosed with GCA last July. It was very scary, I was hospitalized for 5 days. I was on a high dose of prednisone, then tapered off. I am now on a Actemra injection (self administered) every 2 weeks. I was told by my rheumatologist that it is unknown why you get an autoimmune disease, something in your body triggers it. As far as autoimmune diseases go, GCA is one of the more common ones. After a couple of weeks at home after I got out of the hospital, I went about my normal life. I never stopped seeing my grandchildren, I traveled to Florida with them. I take my travel cooler with my injection & go. My motto is “it could be worse”. Of course you still have to be careful, wear a mask on a plane, try to eat healthy, exercise. But life is short, try not to miss it. Hope this helps.
Replies to "I was diagnosed with GCA last July. It was very scary, I was hospitalized for 5..."
Connect
@dbyme
Thanks for your perspective. I'm going to read this to my husband. He's scared to do anything and I'm afraid he's going to miss out on everything. When you got out of the hospital and went on Actemra after high-dose prednisone, were you also on prednisone for some time? They had my husband on 80 mg prednisone and once a week Actemra injections. He was hospitalized two days and went to a clinic for the last IV infusion (3 total). They did say his was the worse case they'd seen and that at first, it was resistant to treatment. Until they did those infusions. We've tapered over the past month to 60 mg but that is still very high. I notice side effects like he's jittery, hands shaking, only able to sleep about 5 hours a night so he's often tired, and sometimes it seems he's a little forgetful and clumsy. Not sure if these are classic prednisone side effects or not. Otherwise, he's not in pain so he's happy about that. He does worry about his immune system with both the prednisone and Actemra. His doctor put the fear of God in him when she told him what could happen if he got a virus. So I get why he's scared and doesn't want to go places right now. Maybe when we've tapered to a much lower dose of prednisone and with the weekly Actemra injections he'll feel better and the doctor will lighten up a bit. At least we have a good doctor - our first was awful.