GCA and Vision update

[Lenore58]

As you all may recall, I was started in 60 mg. Prednisone in October. I am currently on 40 mg. I have now had 3 (weekly) injections of Actemra. I am still very concerned about my eyesight. I still see double at a distance, though it’s not as divergent as it was, I can read again up close, though, without it, being double. I went to my optometrist on Friday and one eye is at 21 pressure the other at 18. (This is up from 16 and 18 last time, but she feels it is still not in a range that should frighten me.) She also said that my optic nerve looks very good. So why is my vision doubled and weird then? I was so hopeful that she would fit me with prism lenses, but it was a total fail! My eyes are seeing on two different planes and refusing to come together no matter what we tried. I live in an area with no Neuro-ophthalmologist close by. I will have to drive three hours to see one, but that’s my plan. It’s extremely disturbing and tiring to my brain to try to make sense of what I’m seeing. She also referred me to vision therapy, so I will see what, if anything, they think they can do.

I sometimes wonder if it’s GCA causing the vision problems (rather than the steroids, as the docs think) bc of the way my dosaging was handled. I was given 120 mg of prednisone intravenously in the emergency room. That was on a Saturday. No visual symptoms. The next day, Sunday, through the following Thursday I was only on my usual 10 mg of prednisone. I had the biopsy on Wednesday and when the results came back on Friday my dosage was bumped up to 60. Soon after the visual disturbance started.

I paid privately to have a “Lifescan” today, which is a mobile medical company. They will be using ultrasound to look at my carotid arteries and aortic system. Then on Thursday, my insurance will be paying for a CT angiogram scan (with dye) to check abdomen and chest for aortic involvement.

I’m flying a few states away to be with my kids and grandkids over Christmas. I leave December 16 and return the 28th. Hopefully that won’t be too much stress on my body. My doctor ordered bloodwork for December 11 and if it comes back with my inflammatory markers heading downward still, she’ll be lowering me to 30 on the prednisone. as you may recall, only my C-reactive protein was elevated when GCR hit, and only very slightly. Otherwise, my markers (CRP and ESR) were never out of the range of “normal,” though my guess is they were elevated for what my normal was. I don’t really have a baseline before PMR hit.

Meanwhile moonface is real! 🌝 I’m starting to sleep better: 5-6 hours, if lucky, (but not straight!) instead of 3-4.

I will update again when I get the results of both scans or if anything dramatically changes. Any thoughts and experiences based on what I’ve reported about my eyesight are welcome.

[DorsetLady PMRGCAuk volunteer]

Pred can cause vision problems as you have been advised by doctor and as you said it started after you’d been increased to 60mg.

I think your optometrist is doing what she can to help you … so distressing as it is, I think you have to accept that until such time as you have results from further tests and get an appointment with neuro-ophthalmologist there’s not much else anyone can do.

[123-go]

The double vision is an on-going problem for you, isn’t it? One would have hoped that you’d have had a firm diagnosis by now and are being suitably managed in that respect. I replied to an earlier post of yours where I mentioned that my double vision was caused by sixth nerve palsy and not giant cell arteritis and corrected by decreasing strength of prisms on my glasses. Have those investigating your double vision considered sixth nerve palsy? Did your optometrist not even try a prisms?

It’s a shame that your Lifescan appointment didn’t include a temporal ultrasound scan which would very likely have been more conclusive.

Even if your blood markers are coming down, something is causing your double vision. Only when the cause is found then something can be done to correct it.

Yes, do let us know of further developments, please.

I

[PMRpro Ambassador in reply to 123-go]

Just to add to this - GCA can cause 6th nerve palsy, even if it is rare.

fortunejournals.com/article...

[Lenore58 in reply to PMRpro]

Thank you for this! Will read it. I just finished reading about sixth nerve palsy in my eye symptoms certainly to match. I’m going to reply more above to 123-go.

[123-go in reply to PMRpro]

That’s interesting (read quickly as out on the razzle soon: I wish, ha ha). Will point out that I had no pain and d v was unilateral. It was due to knowledge gained on this forum that prompted me to adopt the mantra, “better safe than sorry” and to take immediate action even in the absence of pain. Another reason to be grateful to you all.

[PMRpro Ambassador in reply to 123-go]

As I just said somewhere else - when you go quickly you often can't tell where it went wrong - might have been a few mg ago. And it can go spectacularly wrong when you are in a hurry and be horribly difficult to sort out.

[Lenore58 in reply to 123-go]

Thank you! I just read up on sixth nerve palsy, and it certainly does match my visual symptoms. Funny that one of the treatments is steroids when that is thought to be the cause of my diplopia.

My poor optometrist tried and tried to find a degree of prism lenses that would bring my vision together. No matter what she tried my eyes refused. The prism had very little effect. Not sure why or what that means. Hopefully I can get in to see a neuro-opthamologist. They should be able to diagnose sixth nerve palsy if that’s what is going on.

The LifeScan appointment only had certain offerings, and that wasn’t one of them. But I had MRIs and MRAs of my head in October, and they came back with nothing unusual, however, my vision was ok still, I believe. I’ve been looking at my calendar and notes to see how things progressed:

The timetable (to help me see it!)

10/1 Moh’s procedure for basal cell carcinoma on *right* side of face. (Could this little trauma have triggered GCA? A week later *left* temporal artery puffy and tender.)

10/7 To hospital with temporal artery symptoms: puffy and tender left temporal artery, headache 24/7 for a week, fatigue and malaise, left eye socket/muscles ache, facial pressure. (no visual symptoms) Given 125 mg IV steroids, sent home, told to follow up w/rheumy.

*Symptoms resolved Post IV steroids

10/8 Resumed usual 10 mg. Prednisone.

10/9 Video appt. with rheumy

10/11 Temporal artery biopsy

10/13 Pathology report positive for giant Cell Arteritis. Began 60 mg. Prednisone

10/17 (approx) most of my initial GCA symptoms returned: Headache, facial pressure, fatigue, left eye socket/muscles ache)

10/19 MRIs and MRAs of head and neck. Nothing unusual noted (even temporal artery that was positive for GCA!? iIs this because the 60 mg of steroids was disguising it?)

* Drove myself to MRI, so vision not affected yet. *Could imaging dye have caused vision problems …6th nerve palsy?

10/23 About when visual symptoms started

10/31 Reduced pred to 50 mg.

11/2 Noticed vision was divergently doubled

11/3 Stat visit to Opthamologist. (Note: I was surprised at how “unthorough” the exam was. He checked eye pressure and looked into my eye with a light. No pictures taken of optic nerve, no dilation) Said optic nerve and eye pressure looked good. Believed visual symptoms were side effect of prednisone.

11/9 Feeling better by now in terms of headache, pressure, etc. Eyesocket still achy, and vision still affected.

11/15 Reduced Prednisone to 40

11/17 1st dose Actemra

11/24 3:30 pm 2nd dose Actemra

11/24 9:00 pm Thunderclap headache! (Never had one before. Or since.)

12/1 3rd dose Actemra

Along the way, my vision went from disturbed, to divergently doubled far away, but a foot in front of my face was clear. I then lost the ability to read a foot in front of my face for a while, but that has gotten better. The double vision has gradually gotten better in terms of how divergent it was.

It was helpful for to get this all systematically in one place. I am now more inclined to believe it is the prednisone affecting my vision. That still does not give me peace, because the steroids can also harm your vision permanently. I have labs on December 11 and hopefully I’ll be able to go down to 30 mg of prednisone which will hopefully help my vision. And now I’ll be thinking of and researching more the sixth nerve palsy.

Thank you!

[Lenore58 in reply to 123-go]

Forgot to ask: Did they determine what caused your 6th nerve palsy? What kind of doctor diagnosed that? I’m so glad the prism lenses are working for you.

[123-go in reply to Lenore58]

Apologies for lateness in replying- life got in the way🙂.

After presenting at the rapid access clinic (with double vision) at my hospital in Dec ‘18 there was excellent communication between my rheumatologist, consultant neurologist and Opthalmology. Optic nerve and macula were normal…no evidence of optic neuropathy. Decreasing strength of prisms over six months returned vision to normal.

Investigations over time including MRI of head and MRI angiogram showing no abnormalities in intercranial arteries or suggestion of stroke. Neurologist concluded that the cause of 6th nerve palsy could have been due to viral infection or small vessel vasculitis and was vascular in context of PMR.

Since 6th nerve palsy diagnosis I have had ultrasound scans of temporal arteries reassuringly showing no active disease.

[montebello]

Lenore,

I feel for you. I'm a GCA patient since AUG 22, and have struggled with vision issues ever since. Fuzzy vision, much worsening cataracts, and increasing double-vision issues from the start. The double vision issue started even before I was diagnosed with GCA by a few months. I'm fortunate, in that my double vision exists only when I tilt my head, or move my eyes in the extreme left or right positions. I'm fine when I look straight-ahead, and have no problems driving, etc.

However, I've been told my a Johns-Hopkins ophthalmologist that I have 4th nerve palsy of the left eye-- and that my condition is most probably permanent. Even more, he suspects that my condition is NOT GCA-related, but more likely age-related (I'm 76). I have reservations about his conclusions, because my double-vision issues started right before I was diagnosed with GCA.

He spend about 1.5 hours with me, trying to determine whether or not prisms would help me. It was difficult for him to evaluate, because my glasses already had 0.5 prisms within them. But he more or less said that he didn't think prisms would help, since they were most effective in correcting double-vision issues when looking STRAIGHT-AHEAD (as opposed to tilting like my issue).

Nevertheless, he gave me a 1.0 stick-on prism to try out. I'm wearing it right now and it seems to help.

None of this information is likely to help you too much, I suppose, then again if you're like me I like all the information I can get.

All the best...

[Lenore58 in reply to montebello]

Thank you so much for sharing your experience. I am indeed like you; wanting all the information I can get! It also always helps to know if someone else is struggling with a similar thing, and putting our heads together, can maybe help us all figure some things out! I would definitely be questioning the idea that the fourth nerve palsy has nothing to do with the GCA. Since GCA causes inflammation it would make sense that an inflamed artery could be pressing on a nerve…but I’m no Johns Hopkins eye expert! 😊

[PMRpro Ambassador in reply to Lenore58]

Not so much generalised inflammation - but the GCA can compromise the blood flow to the nerve which is what it does when people have visual symptoms sue to poor or stopped blood flow to the optic nerve. That causes damage to the nerve and nerves rarely recover well.

[Lenore58 in reply to PMRpro]

Thank you PMRpro. Your breadth of research knowledge is such a gift here to all of us,

[Toolie2]

"It’s extremely disturbing and tiring to my brain to try to make sense of what I’m seeing"

Would it be worth trying an eyepatch on the eye that is most uncomfortable for a while? I have GCA and lost most of the sight in my left eye. Ironically, the vision in that eye is sharp and clear, but it's limited to just a narrow wedge. Sometimes, when the light is strong, that clear vision obtrudes on the vision from my right eye, but it is slightly to the left and a bit lower down. My optician experimented with prisms and it brought the two images together, but I wear contact lenses and they can't be adjusted by prisms because the weight would be at the top, and gravity would prevent it.

However, I often wear an eyepatch for half an hour or so and it seems to rest both eyes. Maybe my brain as well!

[Lenore58 in reply to Toolie2]

Yes, thank you, Toolie2. I do the same for parts of the day. I spend part of the day with a patch over each eye, hoping that it strengthens each eye. And then I also do without a patch, reasoning that maybe that will help them work together. And my eye doctor told me to put scotch tape on the inside of one lens of my sunglasses (same effect as a patch) which is helpful for driving in the daytime. (I don’t drive at night currently.)