First of all, the back injections work because now I'm back to pain and stints of short-term standing and then the walker. So, that is good news. Now, my back feels almost as bad as before but I am due for the second round of diagnostic injecitons on March 15th, analyze the pain diary and then hopefully, schedule an nerve ablation. Fingers and everything else crossed.
Yesterday I saw the neuro-opthalmologist and I have a blind spot in the right eye and (with my OK) he called University third year students in to 'have a look' at what the optic nerve looks like when sight is lost completely and then partially, as in the right eye. I can still see enough but will be mindful of any symptoms since I am tapering. I think the last time I lost some peripheral vision I'd gotten to 17 or 15 but hadn't been back on the Actemra that long.
This is my second day on 10 mg. and that is a first. I don't feel anything yet, 😽 After one month, I'll be cutting one milligram per month. I'm not someone that can't wait to get off it. I'm 81 and want to write a book, yep, and paint as well as smell the flowers, so it is quality I'm after. I have dropped 15 pounds, which doesn't show, but I can tell it is gone. There is also an improvement in my legs I feel.
So it is forward, right forum? I'm on your conveyer belt of support.💕💕
P.S. The book will be about time I spent in Moscow in 1991,😢😢, not much has changed.
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Grammy80
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Gosh Grammy the book! I can’t wait to read it. What about half a mg a month? I needed to do this first time round. Wishing that your painting and smelling the flowers doesn’t have to wait too long, don’t forget listening to the birds sing. I think my garden finches have had their first brood, judging by the frantic twittering I can hear from my Laurel tree. Sending love to you. 💖 xxxx
Mmmm, that all sounds great Jane. You have a laurel TREE? Here laurel grows on the ground in woodlands...sounds gorgeous. When you did the 1/2 mg, were you on Actemra? I believe that is his basis (the rheumy) for 1 mg a month....but I won'd hesitate to speak up, thanks to the forum. Love to you too~!!💕
No I wasn’t on Actemra. I had PMR alone but I will still be hoping for and aiming for my Adrenal function to return and that is helped by a slow taper of micro doses. From my present GCA/LVV dose of 7 mgs. Yet another stalling of Actemra due to Antibiotics for yet another UTI. The birds love my gnarley, thickly leaved Laurel tree that grows right outside my bedroom window and is host to many birds. Mostly goldfinches, I have counted up to 15 in previous years. I keep them well fed and watered. They are a joy! X
Thanks so much, Jane! Good info!! If I have any issues, you can bet I'll be taking a handful of prednisone. 😜Just call me Dr. Marilyn. It is hard to find 1mg prednisone here in the states, at least Indiana. What a picture you painted of your tree and birds. I think you have a book in you!💕xo
I think it became my children and now my grandchildren, like so many women’s books. They take a lot of creativity. I can’t wait to hear about Russia and you. Xx
Good luck with next injections. Hope you get some relief. Oooh a book,now there's a plan👍
Morning Marilyn, all good news for a change, although not good on the sight front. You'll have to let us know about your book, would love to read it too. Keep taking the tablets haha, just like we all do. I'm still taking 7.5mg and really loathe to reduce further for the time being. You take cars and the very best of luck re your back X
😅😆Sold....I'll let you know when it is finished. LOL My family gave me Storyworth for Christmas and I'm loving💖it. Some of the questions took me back to that 1991 journal; that combined with the Ukranian situation inspired me. Fingers crossed. 💖
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