Vision symptoms Prior to Vision Loss?

[GCAfiveyearrelapse]

My GCA came back about 6 weeks ago with transient vision loss in one eye the ONLY symptom. Sed rate and CRP normal over the entire 6 week period. I posted when this occurred and am grateful for this group. Started pred in hospital and visual symptoms disappeared. Under care of Neuro-Opth and a rheumatologist, I have been on a fairly aggressive taper now down to 10 mg and the vision symptoms are coming back so I have upped to 30 mg and will go higher tomorrow if needed.

My question for anyone with GCA who has lost vision - how did it happen? Mine is like a gray curtain that slowly spreads from left to right. Sometimes it’s a bit pixelated but ultimately my entire field of vision is replaced with gray - as if I had my eye up against a gray wall. On occasion, I also see bits of sparkly colors and bright “twinkles”. Also a dull pain in that eye is now noticeable with the pred at a lower dose. Lasts for about 90 seconds then vision comes back.

No visual symptoms since the treatment began until yesterday when I had dropped from 15 to 10.

Thanks for the opportunity to compare notes. The possibility of losing sight in one eye is obviously worse than taking pred for the long haul but this medication is loathsome…..a miracle in many ways, but taking its toll on us just the same….

[SheffieldJane]

Have not lost vision. I just wanted to send my best wishes and seasonal greetings! X

[Hidden]

Good morning, how awful for you, you poor thing. Did you start with PMR then went on to get GCA. What was your original dose of Pred when you were first diagnosed? I was diagnosed with PMR 2 yrs ago this month. Started on 15mg but once I'd managed to get down to 6mg GCA kicked in. Symptoms I experienced were : Tender Head, Jaw Claudication and my back top teeth ached. Rheumy told me to take 30mg, but I think he told me to reduce too quickly. I only have peripheral vision in my left eye, to the left of the eye, the rest is dark. Lost that eye due to another illness back in 1994. I'm currently taking 6.5mg using the 'Dead Slow and nearly Stop Method' advised on this forum. So I'm petrified of losing my good eye. I was told I had a small cataract in my good eye recently....dread that surgery when the time comes in case there is a problem.

My very best wishes to you

Anne

[GCAfiveyearrelapse in reply to Hidden]

Hi - no PMR. Original dose of pred in hospital was 100. After discharge 60 mg. Best to you!

[4sibbs]

Hello, I post for my 96 year old mum she was diagnosed with GCA in 2014 and lost most of her sight, we were not aware of the condition or the symptoms she was immediately put on 80mg predisolone even though the consultant said she’d need a biopsy to confirm which is was a few weeks later. Mum had a breakdown after being on the reducing dose of steroids for about a month, 8 years later she is still on 10mg a day her mental health has suffered but we feel that is due to not being able to accept her sight loss, she says the little vision she has is different in each eye , her right eye is the worst she describes it as having a shadow across it, everything is blurred in her left eye & she often complains of everything being dark. She is in a care home & if any of the staff change their hair style or mode of clothing she doesn’t recognise them, she just about recognises her family (she now has impaired hearing too). We encounter lots of medical personnel who are not familiar with this condition including paramedics and hospital doctors and nurses, mum has other medical conditions and on occasion when in hospital medical consultants have actually stopped the steroids often we are not aware until she goes back to the care home & they tell us, considering they maintain the little sight she has I now send notes advising them of the condition & to not stop the steroids. When allowed to visit we always ask but we shouldn’t have to I always try to raise awareness of the condition where I can.

[PMRpro Ambassador in reply to 4sibbs]

What on earth is the hospital doing stopping long term pred at that level? Irrespective of the fact it is maintaining her remaining vision, at her age they could send her into a totally unnecessary adrenal crisis!

[4sibbs in reply to PMRpro]

That did happen on one occasion and she had to be readmitted to hospital, I messaged this site at the time and if it wasn’t for your help we wouldn’t have known that could happen and she may not have recovered I can’t thank everyone on here enough. It is disgraceful that a medical consultant would not realise the implications, I have complained many times about mum’s treatment under the National Health service including her own GP but they always close ranks & investigations take months then the outcome is usually the same ‘procedures will be reviewed’. This doesn’t deter me but I fear for all those vulnerable people who don’t have family to fight their corner.

[Carriemetz in reply to 4sibbs]

Well done for complaining. You’re right that they mostly find themselves, like Mary Poppins, ‘practically perfect in every way’ - but at least they’ve had to look at what occurred. Thank goodness your Mum has u to look out for her.

[Sophiestree]

This surely sounds like urgent attention is needed? Can you ring your consultant?

[GCAfiveyearrelapse in reply to Sophiestree]

This is the care strategy, because my blood markers are normal and no other symptoms except the vision interruption, the strategy is to slowly drop the pred and wait for actionable info. So for now the plan is to stay at 10 and increase if I have any more vision episodes. It does seem a bit unscientific but both neuro opth and rheumatologist concur this is the best approach. They also both suspected it could be something else related to retinal vasculature- particle of plaque, eg, in artery nearby etc. but the return of the symptoms upon prednisone decrease to 10 is itself a valuable thing to know.

[SnazzyD]

Hello, I didn’t permanently lose my sight but had similar symptoms to you; seeing grey and sparkles of light for weeks/months. I had it intermittently then suddenly without warning both eyes seemed to shut down over a short time like I was looking down two tubes, but luckily I was in A&E at the time. I was in A&E because of more usual GCA symptoms that blew up properly over 48 hours. I had normal bloods, normal eye exam (a few hours after 60mg and complete resolution of symptoms) and eventually a normal biopsy. Due to my rapid response to Pred, it was assumed I had GCA and the rest is history. It really is hard to have one’s life ‘dissolved’ by Pred because of a what if and it must be doubly so with round 2. In moments of doubt you just have to cling on to the fact that the symptoms resolved with Pred and you have the extra evidence that it came back when the dose dropped.

[PMRpro Ambassador]

Those symptoms are fairly typical of what GCA patients have described in the past. There is a thread here with patient experiences - but whether there is much about the visual effect I don't know, can't remember.

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Mine is well documented- see profile and posts, but briefly...

1st day - grey curtain as you described starting lower part of eye...

2nd day - progressing up eye until half affected - attended GP surgery - couldn't find issues, suggested opticians appointment..

3rd day - started as 2nd day, but progressed as evening approached..

4th day - eye full affected - attended A&E after discussing with optometrist over phone (who had no vacancies, but thought maybe detached retina) - diagnosed as GCA and given 80mg Pred...not to save that eye as too late, but to protect other.

That dose continued for 2 weeks, and bloods tested every 3 days until senior ophthalmologist happy second eye was saved...then 60mg for a further 8 weeks.

The meds might be "loathsome" to some, but to me they were a life line....and stopped full sight loss.

[GCAfiveyearrelapse in reply to DorsetLady]

thank you! Just read your profile. I am very sorry for your initial misdiagnosis but grateful and thankful that you have commited to sharing and helping others through this group. It's enormously beneficial to have access to this community. And yes, pred is a mixed bag but you are so right -- it's a sight- and health-saving mixed bag!!!!

One thing i wonder is how many of these brief interruptions in sight can occur before the eye just gives out. It sounds like, for you, there were not short interruptions that resolved but rather a slow decline over several days ending with the loss.

[DorsetLady PMRGCAuk volunteer in reply to GCAfiveyearrelapse]

How many “issues ” happen pre serious sight loss I really don’t know , in fact I doubt there is a simple answer. There never is, is there?

Some people don’t have any warnings: go to bed one day - and wake up blinded the next morning -maybe one eye, but unfortunately sometimes both. That must be devastating…we have had a few relations on this forum over the years saying that has happened to a loved one.

Because the cells that cause the narrowing of the artery walls seem to grow randomly, it’s impossible to know what arteries they will affect and to what extent.

If/when the ophthalmic artery is affected, blood may still get through to the optic nerve -but it depends on how much blood.. if enough then sight is only lost temporary. However, if the artery becomes too blocked (and it’s only a tiny one compared to some) then then optic nerve is starved - and lights out!

Luck of draw maybe? Who knows.

Had I known anything at all about GCA, I might have saved some sight by going to A&E earlier ..but it is what it is.

I’m just grateful I have good sight in remaining one.

[PMRpro Ambassador in reply to GCAfiveyearrelapse]

Depends whether it is a blockage of the TIA sort or one of the major stroke sort. If the first clot getting stuck in the narrowed artery is enough to stop the blood flow entirely straight away - once is enough. Any warnings must be taken seriously.

[4sibbs]

We were told the symptoms are pressure headache e.g. the type that feels like you have a weight on your head, painful when brushing hair and jaw pain when eating mum had had all of these about a month before diagnosis but wouldn’t let me take her to the doctors, the day before she had vision problems she had tripped and bumped her head on a wall which needed stitches so our obvious thought was that was the cause of vision disturbance she just said I can’t see clearly, thankfully I decided to take her to eye casualty rather than A/E. Mum does often complain that she thinks her vision has got worse but the consultant told us the nerves at the back of her eyes are damaged so it can’t get any worse. The pandemic has been difficult in many ways one being the care home GP didn’t physically visit the premises for many months and we have to rely on the staff to make sure mum is getting the right treatment. (She is currently in hospital no visits allowed)

[DorsetLady PMRGCAuk volunteer in reply to 4sibbs]

So sorry to hear your mum’s story ….it must be devastating for her and you..Consultant is partially correct in that the optic nerve has been damaged due to lack of blood flow from ophthalmic artery, and that damaged cannot be rectified.

But the nerve splits and goes to both eyes independently, so yes the section behind lost eye is irreversibly damaged, but the section behind the eye she still has some sight in is obviously still receiving some blood via the artery. ..and that must be preserved! So he is wrong in saying it can’t get any worse….that’s why steroids cannot be stopped until/unless her GCA goes into remission.

[4sibbs in reply to DorsetLady]

Thanks for this any information is helpful