I'd been on 40 mg of prednisone and dropped 10mg in October and restarted Actemra. I sure didn't feel great but in early November, my rheumatologist thought we should drop another 10mg....I was nervous and just felt lousy.
BUT, the last 3-4 days I have really felt good, I've walked in the house more than I have in months, did a little cooking and my mind feels clear and sharp....THAT IS NOT THE BEST PART....
Yesterday I had a visual field exam at the ophthalmologists and the vision in my right eye has remained the same~!! That was really exciting. Next week I see the rheumy and I know he will want to reduce the pred some more, but I'm going to insist we go slower at this point based on past experience.
Another factor I believe (it sure didn't make much sense to me) was the neuro-ophthalmologist put me on gabapentin (I was skeptical...who needs another med) for an inflamed optic nerve, optic neuritis, but I swear the vision in my right eyes seems clearer, sharper.
COLOR ME THANKFUL AND GRATEFUL.....💖 MOON FACE AND ALL~!
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Grammy80
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Good for you! I had been on it for a year before but got an infection, so I had to come off it for 5 months. It has helped and I'm glad you have the opportunity to have it. Good luck and let me know how it goes~!!💖
Hi I was very interested to learn about your eye and its sight. Like you I have GCA and have had for nine years. I too have had relapses. Sight is so precious - good luck to you.
Good fortune to you as well...to all of us. When I started in 2019 with GCA....nobody seemed to know anything, even the doctors in Maine. Finding this group was a lifesaver. I had people who understood, I learned and I was no longer alone. We are a strong group...I draw so much from everyone here...people like yourself.💖
As I have said before I was nine days in hospital before they came up with the answer late on the Saturday night and within about an hour or so I felt a different person thanks to predisolone. The big side effect though it started my cataracts growing and that was expensive because I had to wait and yet I wanted to still be able to drive safely.
It is difficult when we get into trade-offs....here is the benefit and here is the side effects. One of my doctors always lifts his hands and says....'cost vs. benefit'. Then I know it is decision time. I guess we are fortunate we have choices~! I'm happy for you that you can still drive!!💖
Actually, dropping 20 mg of prednisone in a two-month period, introducing 900 mg of gabapentin (by a different doctor)...when strange things were happening, I had no idea what was causing what~!! My rheumy said I would feel like 'garbage' and he was spot on. I was surprised at the Rx for gabapentin myself.
BUT, I just know these last days have been the best I've had in a long time. I have to use eye drops, not a big deal, 5-6 times a day because my vision blurs, dry eyes. I'm vigilant...but so grateful. Why, I've even been walking quite a bit in the house!!💖
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30 days at 9mg the good news and the bad.
Thank Goodness I rang
See ophthalmologist today November 8 for double vision exam hoping to have good news 
Some not so good developments
