Giant Cell Arteritis and sight loss

[jessietwodogs]

I have just been diagnosed with GCA and am taking 55mg Prednisolone and 75 mg Clopidogrel daily. While in hospital I didn't notice anythin wrong with my eyes but since recovering I have discovered my left eye is blurry when looking at long distances. Has anyone else experienced this while on steroids?, I'm am also having mild forehead headaches only in the morning. I'm not sure if I should be worried about this as I can't actually be certain at what point (since experiencing symptoms) my eye wasn't focusing properly. So far I've been checking it for the past week and it doesn't seem to be getting worse. Maybe someone has felt something similair, any thoughts or advice would really help

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Sorry to hear you have GCA, and whilst I doubt the blurriness is down to GCA as you probably would have had it pre -diagnosis it obviously does need to be checked.

It is more likely to be a side effect of the Pred - or maybe the beginning of a cataract - but it can be a very scary sensation - we always think of the worst scenario.

How long have you been on Pred and what was your starting dose.. and were you eyes checked on diagnosis. If not, then do need to be nw, and even if they were with this new symptom they need testing again.

Can you you get an appointment with you local optician/optometrist - Specsaver are very good. Or you could try for an appointment via this service which provides urgent and/or minor care - if there is one in your locality -

primaryeyecare.co.uk/find-a...

If is worsens or you cannot get an appointment - then a trip to A&E/ED.. just to make sure all okay.

if it is the Pred causing the issues then drops will help.

please keep us informed.. and hope it's nothing serious - but always wise to get it checked out.

PS - when this is sorted maybe have a look at this for general info -

healthunlocked.com/pmrgcauk...

[jessietwodogs in reply to DorsetLady]

Hi, thank you for your help. I'm going to an eye clinic which is next to my local hospital in Hereford. I've been on Pred for 5 weeks now and just started reducing by 5mg yesterday, so I'm taking 55 mg now along with Clopidrogel 75 mg daily. I will feel so much better seeing an optician and I'll sleep better hopefully!

[DorsetLady PMRGCAuk volunteer in reply to jessietwodogs]

Okay good -please let us know what eye clinic says— as for sleep afraid high doses of Pred don’t help-but at least if your not worried about eyes then it might help.. 😊

[SnazzyD]

Hello and welcome to this distinguished club with reluctant members!

Can you say a bit more about what led to your diagnosis, how the diagnosis was made and how long ago it was? It really helps.

Pred can monkey about with one’s focus especially while on high doses. I found this particularly with speed of changing depth of field. Annoyingly it keeps changing so a different pair of specs doesn’t help for long.

However, your issue sounds one sided so it might be worth mentioning to a doctor. Did you have unequal eyes before diagnosis?

Regards your headaches, it could be the Pred, the GCA inflammation not quite being controlled (this is where your recent history helps) or the Clopidogrel. The latter has headaches as a side effect.

nhsinform.scot/tests-and-tr...

[spoof99 in reply to SnazzyD]

interesting thing with the vision, that was my primary symptom double vision and blurred vision in the right eye...and I have 3 or 4 different glasses on the go now, I notice it more at night.

[jessietwodogs in reply to SnazzyD]

Hi thanks for replying, I was admitted to hospital on 10th Feb this year. My symptoms were exactly like the slipped discs I'd had 7 years ago. After being admitted to hospital a scan showed a tear in the Carotid artery just at the base of the skull.

It all started at work with headaches at night which got steadily worse over 5 weeks. My GP also suspected slipped discs and gave me standard painkillers as well as booking me in for a scan. The pain was so bad I went to A&E and after three days the doctors put me on steroids. It was hard to diagnose via a scan because there was so much inflamation that they couldn't see the problem. I was asked if my eyes were ok but I hadn't noticed anything, also I had an eye test last year and the optician didn't mention it. I'm going to an eye clinic which is a part of my local hospital to get myself checked out tomorrow, it seems the most sensible thing to do. I can't really pinpoint when my eye became so out of focus (befor or after hospital) but I'm hoping my visit tomorrow at the clinic it will shed some light.

While trawling through the net I noticed that steroids should limit the damage to the optic nerve but something like about 1 in 20 people still get eye damage, without steroid treatment its 1 in 5..

[DorsetLady PMRGCAuk volunteer in reply to jessietwodogs]

While trawling through the net I noticed that steroids should limit the damage to the optic nerve but something like about 1 in 20 people still get eye damage, without steroid treatment its 1 in 5..

Tell me about it… but you do need to be on the correct dose of steroids for them to limit damage… 😊

[jessietwodogs in reply to DorsetLady]

So interesting to read your story on your profile, what a journey.!

[DorsetLady PMRGCAuk volunteer in reply to jessietwodogs]

It was a bit - but through it now and out the other side, feeling great and enjoying life…

It’s one of the reasons I’m on here to let people know there is life afterwards… but I do get a bit twitchy when anyone has eye issues.. 🫣…

[ngchgc]

Welcome to the club, yes GCA too, 6 months on Pred started at 60 mg, last three months tapering down to where the Rheumy wants my dosage to be, Last few days blurry vision Right eye now, seeing the ophthalmologist Monday, they made a spot for me. Yes headaches waking me up early in the morning like a spear through the temple right behind the eyes, nothing helps, even tried to up my pred to see what happens for a few days, nothing. Strange how it disappears when upright or sitting up takes about 30 minutes to one hour to stop, and have to catch up on sleep sitting in a chair, if I lay down the same day, the headache returns! More questions to the Rheumy next Wednesday. However tired of all the side effects of pred, do you have the shakes and anxiety attacks? There is light at the end of the tunnel, but we must wait our turn, so I have been told by my Rheumy, and this site. Like my Rheumy said, "every day will be different." You are not alone.

[PMRpro Ambassador in reply to ngchgc]

As a matter of urgency - have you had your eye pressures checked? Lying down will increase the occular pressure and sitting up reduce it. It is worse in a case of glaucoma. If I were you i wouldn't wait for Monday, I'd try to get them checked today if you can at the CUES optician. Eye pain can be due to acute angle glaucoma and that is a medical emergency too, like GCA.

[ngchgc in reply to PMRpro]

Yes checked in January all good, the earliest they would take me is Monday, If you tell them you have GCA, mountains get moved! Otherwise weeks.

The headache is behind the eyes, and moving them around does not change the pain

Thanks PMRpro

[Steal]

I hope things work out well for you, this forum is so helpful with good advice. For myself, I have had gradual but noticeable deterioration in my sight and faster development of cataracts ince taking pred (about 3 yrs). I trot off to the optician when anything seems untoward and put up with the cost of changing glasses if necessary. Could also be the aging process of course...

[Missus835]

Hiya. My blurry eyes, the right one was worse, was cataracts. I had them done last spring. I sincerely hope the same for you. Take care.

[Grammy80]

I've had GCA for five plus years now and found symptoms varied from time to time....as did my dosage of prednisone even though I was on Actemra also (States).

I do hope you get this checked soon, it is possible your dose may need to be increased for a bit. I'm a big believer in going by your symtoms....and it just isn't worth risking your eyes. My best...💞

[jessietwodogs]

Hi everyone, many thanks for your replies.

Here's my update.

I went to A&E yesterday and they immediately sent me to the eye clinic which is next door. I had lots of colour and letter/number reading tests and a pressure test on my eyes, was examined with a light and had two sets of scans to make sure they didn't miss anything. Very thorough and very quick response from Hereford Hospital. The doctor and consultant said everything looked fine and the blurry vision could be the steroids, they also found the start of a cataract in the left eye which could explain the blurry eye. The doctor gave an interesting tip on monitering changes in vision, he said that colours can look different, especially red when the eye is deteriorating, so that's a useful thing to look out for. They also asked if I was having pain in the temples or jaw pain, another clue something is wrong.

I will be going back in a month for another eye check up and They said always drop in even if my eye issues seem trivial because it's better safe than sorry.

[DorsetLady PMRGCAuk volunteer in reply to jessietwodogs]

That’s good -and good service.