I share concerns, I'm sharing some good news!!

[Grammy80]

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~!

[MrsNails]

Great News 💐

[DorsetLady PMRGCAuk volunteer]

🌸

[Sharitone]

Yeay! And you've still got hair!

[Grammy80 in reply to Sharitone]

😂🤣😃It is a bit thinner, but I've got it!!!💖

[alvertta]

Yippee. I went down 1 mg per 5 weeks while on Actemra. Slow is the best. So great you are feeling better.

[SheffieldJane]

Well that was a heart lifting post. May this trajectory continue now. 🍀💐🍀💖💖💖

[Constance13]

👏👏💐

[Rache]

Very pleased to hear your update 🤗 🌷🌷

[nallufl24]

I’m happy for you! I will start Actemra in 2 weeks and hope it can help me.Best wishes to you

[Grammy80]

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~!!💖

[Sophiebun11]

You go girlfriend!!!!

You go girl

[Grammy80 in reply to Sophiebun11]

Thanks~! He'll do~!💖

[calicojoy41]

Heading in the right direction😃😉😁

[Hidden]

Hurrah!

[Bcol]

Lots of good news there Grammy. 😀😀

[Telian]

Happy for you Grammy. 🌺

[Pixix]

Great news, so glad to hear it! S x

[cycli]

thanks for the share Grammy80. Really positive news. Happy for you

[herdysheep]

That's great. Long may it continue

[67Blue]

Wonderful news, you deserve it! x

[prunus]

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.

[Grammy80 in reply to prunus]

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.💖

[prunus in reply to Grammy80]

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.

[Grammy80 in reply to prunus]

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!!💖

[Nightingales]

Wonderful to hear you are doing well. Interesting about the Gabapentin. I can’t take it because it gives me double vision!

[Grammy80 in reply to Nightingales]

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!!💖

[Temoral]

Whoop whoop....🥳

[HeronNS]

Yes, taper slowly. I suspect even with Actemra the 10% rule still applies. So glad you are feeling better and eyes doing well.

[PMRpro Ambassador in reply to HeronNS]

It does at the lower doses - maybe no so much at the higher doses where you probably can get away with bigger steps.