Visit to rheumy today re: vision loss GCA

[Grammy80]

I'd put so much deep thought into the decision of whether I should choose sight or steroids; I chose sight.

Today I had my visit with the rheumatologist and brought in the tests from the ophthalmologist that showed the diminished sight over the last 60 days. Initially, my rheumatologist felt it 'unlikely' that the GCA was that 'on fire, despite the loss of sight.' He said it would be improbable that someone who just came off Actemra in June of this year had been on 20 mg of prednisone until last month and was taking 15 mg per day with excellent lab markers as of August 10....CRP was <0.3, and my ESR was 15 on August 10. The Dr. was more inclined to think I had a blockage to the blood flow or an ischemic incident, and we would find out. He felt worse things could happen to my body than losing my sight; I told him I would choose death first. {Mostly because I know I will be placed in a facility) He said increased pred was no guarantee of sight, and I would have more difficult issues metabolically. I was quite upset because I was reminded of how little control I have over what happens. He ordered lab work, and I was scheduled to see him Thursday for a conversation, and a decision would be made as to how to proceed.

We were at a restaurant eating dinner, and my Dr. called. This was probably two hours after I left his office. He'd gotten my labs, and my CRP had spiked to 1.4 from <0.3, and my ESR had jumped to 43 after just 15 on August 10; new readings today, September 7!!

He increased my prednisone to 40 mg per day, and I see him in a month. The ophthalmologist will evaluate my vision in three weeks. I popped 20 as soon as I got home.

I was so relieved even though I know other speed bumps in the road will come and I have no promises. I'm even more confident than ever with my rheumy because he acted immediately when the lab work was provided to him by the hospital. Show me ten specialists, and I'll show you 7.5 of them that have an ego that gets in their way. My doctor was passionate about his line of reasoning but was quick to change it. I told him that if I were in his shoes with two children that had not gone to school yet, I'd feel as he does. But at my age, I'm seeing the fruits of my life now and feel the love...so I'm all set. After 4-6 weeks, he probably will reintroduce Actemra and then hope to taper.

Thanks to all of you....💖 Never Alone 💖 Long live the forum 👩🏽‍🤝‍👩🏼👩🏽‍🤝‍👩🏻👩🏼‍🤝‍👩🏼👩🏾‍🤝‍👩🏽👩🏻‍🤝‍👩🏻👩🏾‍🤝‍👩🏼👩🏿‍🤝‍👩🏿👩🏾‍🤝‍👩🏻👩🏾‍🤝‍👩🏾xxoo

To those dealing with GCA, PLEASE don't let this scare you.....this is not a normal case and has not been from Day#1. I'm inclined to think it is because the original hospital only gave me 100 mg per day for the pulse starter dose for three days...instead of the 1000mg or 1 gram...by accident; started the day I lost the left eye, and I think that it has been on 'fire' ever since; never quiet.

xoxo Sorry, it is a book!!!💖 and thank you.

[DorsetLady PMRGCAuk volunteer]

Hi Grammy,

Well that was a quick turn around from Rheumy, and perhaps will make him think a bit more about the situation should he come across similar again.

“He felt worse things could happen to my body than losing my sight”- well that’s easy for someone with perfect sight to say, if a little crass!

Pleased he saw sense though, and hopefully it has put your mind a rest…sight wise anyway…good luck.

[Grammy80 in reply to DorsetLady]

I'm glad he had the character to change his mind and treatment. Nothing like years to change one's perspective. If I lose more sight, I will feel I've given it my best shot. If he didn't prescribe the steroids...my GP wouldn't. My mind is a bit more at ease for sure.xo💖 Thanks DL ~!!!

[herdysheep]

Good for you holding to that decision, and proved right. Things could improve on pred, but no sight would not change. A really worrying time for you, but at least you know your instincts are as good as they can be. Hoping all goes well for you.

[Grammy80 in reply to herdysheep]

No guarantees...but pursuing the steroids gives me a feeling of doing everything I can. He'll probably start me on TCZ again as well. There are concerns about infection with TCZ...but one step at a time. 😉💖

[MrsNails]

Hi Grammy, gosh for once it’s good to see the blood markers being taken notice of & a quick change of heart by the Consultant 🙏🏼I can’t even think of his reasoning that there are worse things than losing your sight - not when you’ve been through so much…..

Lots of people have to take Steroids for life with & without complications but losing the rest of your sight is not acceptable…..

I hope you get better news from the Ophthalmologist at your next appointment.

Sending you Big Hugs 🤗

Angela 💗

[Grammy80 in reply to MrsNails]

Thanks, Angela!! He is young and passionate. There will be other 'teachers' in his practice that will take him out of the textbooks and into life. I give him credit for acknowledging the realities and making an immediate call to me after stating his 'case'....we shall go from here. I read his notes (on the computer I can see all the DRS notes) and at the end, he stated how much he appreciated the information from the ophthalmologist. It threw him a curve initially but that tells me he can take input and does listen. xo💖

[MrsNails in reply to Grammy80]

It actually gives you more confidence really - he’s not stuck in his ways & he’s prepared to admit when he doesn’t know!

We can teach these young ones a thing or two! 😂

Take Care 💗

Angela x

[Grammy80 in reply to MrsNails]

This afternoon I looked at my records when I lost sight in my left eye and was finally diagnosed. My CRP was 7.5~! I've always felt my case was crazy because I got shortchanged on my prednisone those first two days...only 100 mg. Who knows..the future is what I have to focus on. 💖

[PMRpro Ambassador]

I agree with DL - shame "young" doctors have so little insight into what it is like living in an aging body. Thank you but some good years are infinitely preferable to many bad ones!

[Grammy80 in reply to PMRpro]

So true.... your perspective and priorities change. He said I could wind up losing my right leg....fine I'll get an electric wheelchair. But if I go blind...I can't find the blooming chair~!! I have a friend who died last week and had fought cancer bravely and was still in 'clinical trials.' He had tangible reasons to fight and deep sincere support. Everything is relative. xo💖 We all need to try each other's shoes on.

[jinasc]

Yippee....................

[Grammy80 in reply to jinasc]

I could hear you in my ear...all the way!!!xo💖

[cycli]

well done and good luck. Rheumy should think before opening mouth. Two ears 0ne mouth, listen, understand, empathize and then speak. should be basic training.

[Grammy80 in reply to cycli]

Nothing like those 'listening ears'....you must watch Judge Judy!💖

[123-go]

Good for you, Grammy! Put yourself on the list for, ' How to educate your Rheumy'!

[Grammy80 in reply to 123-go]

Thanks so much!!! I give him credit for an open mind after giving his thoughts. He is young... he is going to see a lot 'that doesn't make sense.' 💖

[SheffieldJane]

I am so glad that he had the grace to accept that your instincts were right and all was not well and urgent treatment was needed. You express yourself so clearly and you really made him care. I hope everything progresses perfectly from now on and your remaining sight is safeguarded as well as being able to reduce Pred. Sending love and the best of all wishes. 💖💖💖

[Grammy80 in reply to SheffieldJane]

Thanks, Jane...it was emotional because I had decided on sight and I felt l did not want to gamble. I'm grateful he is 'big' enough to keep an open mind too. I'll probably go back on Actemra too after a bit. xo💖

[SheffieldJane in reply to Grammy80]

💖

[2013mayo]

Wow, You have been through quite a tough time.

Sending you a big hug and hope things improve. Maybe I should up my pred as I know things are not right.

😍

[Grammy80 in reply to 2013mayo]

I remember when I first found this forum...oh happy day. I was amazed how easily everyone had access to pred and did adjust their own dosage. It sure has lots of merits. Here, if you have a rheumy, no other doctor will prescribe it....so it is not easy to come by. Hope you are healing well.💖

[2013mayo in reply to Grammy80]

Thank you😍

[Bcol]

Morning Grammy, well done to you, a doctor has listened and learned and because of that has given you more confidence in him. Also you have, hopefully, got the result you needed to save the sight in your eye. Let's hope the opthamologist visit goes well. 😉