GCA rheumatologist visit today.....60mg it is~!

[Grammy80]

I'm just getting to the computer at 5:30 PM CST.

After reviewing the information from the neuro-ophthalmologist, the rheumatologist said I would have to stay at 60 mg per day; he'll see me in a month. He said, ''we" have decided this is the best approach to ensure we do all we can to maintain your vision. I had mentioned that the neuro inferred as much but didn't usually recommend dosage when it comes to pred. The neuro is in a better position, I would definitely agree to evaluate the health of my eye. My rheumy said that sometimes these diseases 'go sideways' and though we like a neat cure, the disease has the upper hand. So, sixty for at least another month, and then he said any tapering would be on the recommendation of the neuro-opthalmologist. It will be very slow, check results, and so on. I'll see the neuro every three weeks for a while.

As you know, I was anxious before the visit and honestly felt relief at staying on the sixty; I'd been torn but would have been scared if he suggested I drop 5-10, I know. As I look at my computer screen, it is like someone has put Vaseline on my glasses. The ramifications of me losing my sight completely, with hubby and all, are too overwhelming; it would be for anyone. I feel it is the right thing; my vision seems more tunneled and closets are black inside, and dimly lit rooms are also very dark. The nerve pain around my blind eye isn't that bad and certainly tolerable. There is one pain up the back of my head that I can't say the same about. Get this statistic...he is a very busy rheumy and only has 5 GCA patients, all of whom came to him with blindness after not being diagnosed.

Getting up at 4 AM to take the prednisone improves the day. It is so obvious that I feel fewer side effects when I am still or resting. The harder I try to focus on doing something---the more of a mess I become, and I know many of you truly get that image. KA-RAZY~!!

This is weird????...but I do love making the beds??? An unexpected side effect? Love to all. xxx💞💞💞

[SheffieldJane]

It’s very late in the U.K. right now. I have read your post and think you are the bravest lady I have ever met. Take great care, sending love and prayers for now.💖

[Grammy80 in reply to SheffieldJane]

I can tell there are a few of you late birds there.....time to sleep, Jane and thanks so much. I got both the gifts💞 All of you give me so much strength.💞💤💤💤💤💤

[HeronNS]

It's good that you've been able to relax a bit, to accept that is is what it is, and thankfully no one is about to force actions that would harm your vision. As my husband has his own (not GCA) struggles with preserving now limited vision I can relate in a small degree to the difficulties which have come your way. Glad that you have a medical team which is treating this seriously. Best wishes.

🍀

[Grammy80 in reply to HeronNS]

Thanks, I feel very fortunate especially to have a neuro-ophthalmologist so close to me, I think there are only two in Indiana. My only other option would have been Chicago, Illinois. The irony of my being sent to him...one visit my ophthalmologist said, Marilyn, I am ONLY and ophthalmologist....you need a neuro........ with GCA. They aren't a common animal.💞

[Nextoneplease]

Dear Grammy

Thank you for this update 😊

My goodness but you are one brave, loving and caring woman. I admire your positivity so much, and your honesty, especially when things are hard.

This sounds like as good an outcome as possible from your review, and I’m so glad that you have medics who are taking your case seriously.

Sending you hugs and positive vibes. Love, Nextoneplease xx

[Grammy80 in reply to Nextoneplease]

Thank you so much for all the positive vibes you send. I struggle when I get overwhelmed or down...I think I feel guilty. Given everything, I've felt fortunate....only I wasn't feeling that way last week and am so thankful to everyone who 'gave me the green light' and so many hugs. I wouldn't ever want to be without all of you. xo💞

PS...I could tell by my inner relief...I agree, best possible outcome.

[montebello]

What an incredible ride you've been on, and are currently on! Thank you for sharing. I hope you are able to sleep.

[Grammy80 in reply to montebello]

I think I will...I thought appointment was 10, it was 11 and the Doctor came in at 12:15PM~! My OH loves a particular Chinese Buffet in the same community, we ate and I had three, yes three dishes of Hershey's Moose Tracks Ice Cream. I'm tired from just carrying me around. It was 90 degrees F and we arrived home at 3:45 PM.....so thank you so much....Zzzzzzzz💞

[potterylady]

Omg, 60mg is so rough. I hope you can reduce soon. You are a gracious, loving soul. Bless you Grammy.

[Grammy80 in reply to potterylady]

💞