Neuro-opthalmologist's order for pulse steroid therapy for good eye~! GCA

[Grammy80]

This morning, I had a visual field exam by this doctor and exam. Sadly, I had a few small blind spots (new) in my right eye, my good eye. Upon exam, he could see the optic nerve of my good eye was swollen. Last night and this morning, I had intermittent pain that started over the blind eye and pressure on the temple on that side. My eyeballs were sore like someone had punched them. This is after four days of 5mg each morning (following 60mg for three days), which is evidently not enough. He is contacting my rheumatologist today with his findings.

My rheumatologist and ophthalmologist were anxious for this fellow to examine me with the equipment and expertise that he had. He felt the GCA was in full flare and prescribed three days of high-dose steroids. When I asked about infusion at the hospital closest to me, he snapped at me a bit and said 'this is not about convenience, it is where I can get you in the quickest.' Good point. He also said, "Neurologists and rheumatologists treat GCA differently." No comment from me. Everything is so specialized these days here. Everyone has their own focus on what constitutes success. I just know—I don't want to jeopardize that eye!! Oh, he also increased my Gabapentin to 300mg four times per day instead of three times. I credit Gabapentin for the clarity that came to my right eye; it was affected at the onset of GCA.

I struggled with clarity with the eye chart, and I have read down to the 20/20 line for at least two years. He has ordered pulse therapy intravenously for three days. I'm unsure of the dosage, but it is probably 700-1000. The infusion center had not called me by 4 pm, but I contacted them. They said they had to get insurance approval (States), and I offered to pay out of pocket. I was anxious about falling asleep with eye and head pain; they still wanted to get insurance approval, which they finally did.

I go tomorrow, Friday, and Saturday at 7:30 AM, and then the next step is to the rheumatologist. Tears rose a few times, but I felt much better once I had the appointment. Pred can 'suck' in a word, but it is also my friend. I can tolerate many things as long as I can see. Plus the fact that because of my OH's dementia...he would be overwhelmed, totally. I need to be there for him.

I was looking at some Olympic photos this AM, and I couldn't figure some of them out at all. ??? I couldn't understand. Now, I understand do; he explained the 'signal' of what I was seeing didn't reach my brain..it was an extremely strange and frustrating feeling.

My posts like this have one main purpose: I know all of you care, as I do, about you. BUT, my purpose is to say be vigilant and proactive about hanging on to your vision. If I can't, it won't be for lack of effort. There are many prophetic statements about blindness, but I'm not hoping to prove or disprove any of them. Please be well. Sorry so long-winded and disjointed... but who else would even understand what I'm talking about...very few. 💞🫂

[HeronNS]

Oh Grammy, what a terrible time you've been having, and the wait to get the infusion must be a total mixture of how many emotions? Thankfully it seems the specialist was on the ball and you are now hopefully on the path to better days. Let us know how things go, and know that you do indeed have friends here. ❤️🌺🍀🤗

[SheffieldJane]

Not long winded nor is it disjointed. I hear an intelligent women hanging on to her sight. Your perfectly reasonable request for local infusions, especially as you are caring for your dear husband, to be met with tetchiness made me feel cross and wanted to bop this doctor on the nose but I suppose he was seeing the issue from a resource angle.

Often, I think you are really brave and sensible. It made me tear up to hear that you cried. I feel as you do about my sight. I don’t think that I would be good at being without my sight. I have a diabetes threat as well as GCA now. I do see a private optician as well as what the diabetes clinic provide and am vigilant like you are and I annoy with my questions and will continue to annoy with my questions. You are right to remind us to be our own advocates. Let us know what happens, sending every blessing Grammy. 😘🙏

[random901]

Sending you many hugs and good wishes. You're a strong person 💐

[DorsetLady PMRGCAuk volunteer]

Oh Grammy I understand…crossing fingers and sending you all the best…please let us know how things go when you are able to.. 🌸

[Sophiestree]

I am so sorry to read this, you must be very worried, and looking after your husband on top.

Sometimes medics need to just step back and check themselves out before they bark. Loved the fact SheffieldJane wanted to bop him on the nose, I'd do a lot more damage than that!

Brilliant you are now having the pulse therapy though, hopefully that should zap it enough for you to regroup and sadly for you start again.

interesting it's 2 days as I thought 3 was the norm, or at least that is what I had (1000mg)

You will be on the ceiling for the next few days, but when you can, do check back in as I will be thinking about you. Huge virtual hug coming your way from the UK 😘

[Rugger in reply to Sophiestree]

I think Grammy is having the first infusion toady, as she said "tomorrow" when writing yesterday! 😉 🤣

[Grammy80 in reply to Sophiestree]

I am having three days, 1000 mg....I'm writing from the States when you are all asleep in the UK...so my tomorrow is your today when you rise...💞

[123-go]

Dear Grammy, here are more virtual hugs 🫶. I’ll be thinking of you and like so many others here waiting to hear good news in due course. Lots of love xx.

[powerwalk]

💐💐 you are an inspiration. Best wishes. X

[Koalajane]

oh dear, I am so glad you are being proactive. Yes our eyes are important to us which is why you have to act as you have done . A big well done to you. I have had to have injections in my eyes for macular oedema and my friends say they could not have them, my answer is if it stops me from losing my sight it is worth it.

I hope this treatment works well for you.

My very best wishes to you

[PMRpro Ambassador]

Nothing to say but hugs xxxx

He was tetchy because he was concerned about getting the infusion asap - and then the insurance stuck an oar in as well.

[montebello]

Thoughts and prayers are all that have for a wonderful lady.

[Rugger]

Sending you very best wishes and healing thoughts. 🌻

[scats]

Thinking of you Grammy. You have won many friends here with your stoic attitude. Keep strong.

[Nextoneplease]

sending you hugs Grammy 🤗🤗 you are such a strong, lovely person, thank you for being here and for your concern for others as well as your dear self xx

Like so many others I wish you well and I’ll be looking and hoping for good news 😘xxx

[alvertta]

sending hugs. I hope these medical professionals can fix this!!

[Fatsiajaponica]

Ah Grammy, so frightening and so sorry you are going through this. Looks like it is being addressed thank heavens. Just sending my best wishes, positive vibes and everything else for a speedy positive outcome.

[Sharitone]

Dear Grammy, sending you my very best wishes, and I know you will appreciate some prayers as well.

And thank you for warning us all again.