eye problems with gca

[Antschi]

does anyone know the percentage of one or both eye blindness with gca?

[SnazzyD]

I’ve read this

“Narrowing or closing of the blood vessels to the eyes can lead to blindness. Vision loss can happen very quickly. About 30 to 50 percent of people with untreated GCA will lose vision in one eye.Sometimes, blindness occurs in the other eye 1 to 10 days later. Without treatment, about one-third of people who’ve lost vision in one eye will lose sight in the other eye. Once you’ve lost your sight, it won’t come back.”

From here

healthline.com/health/giant...

Why do you ask?

[Antschi in reply to SnazzyD]

Thank you for your reply. I have GCA diagnosed quickly in February 2022. I had kaleidoscope vision two days ago which I also had six months ago and was at that time given 60mg pred and three intravenous infusions of steroids by my Rheumatologist. I was told to immediately go to either one of two well known eye hospitals in London should the vision loss occur again which I did and the lack of knowledge and interest about the threat of vision loss with GCA in the doctors stunned me. One of them said, after admitting that he knew very little about GCA "that I was much more likely going to die of natural causes before I'd ever go blind" (I am 78 years old).

Please excuse the lengthy answer and thank you for your reply.

[SnazzyD in reply to Antschi]

Jeepers creepers! I expect you’ll get more replies to the same effect.

[Nextoneplease in reply to SnazzyD]

Absolutely! And jeepers creepers is putting it mildly …..

Perhaps a general A&E department, or indeed a rheumatologist, would be better.

As a footnote, I was referred to our eye hospital by my optician when he suspected a recurrence of GCA. They decided it was out of the question because my inflammation scores were not ‘high enough’, although they were high for me. Fortunately it did turn out to be a different problem, but I can’t say they filled me with confidence 🤦‍♀️In fact it was such a worrying experience that I’d more or less buried it until being reminded by Antshi’s post😞

[Nextoneplease in reply to Antschi]

Hi Antschi

I hope you’ve got a proper assessment now, and treatment if necessary?

[Antschi in reply to Nextoneplease]

Thank you for your reply.The dr found nothing wrong with my eyes and I am now waiting to hear from the Rheumatologist

who will be informed by the eye

specialist. It has become so difficult to see either my GP or the Rheumatologist that I will just have to wait intil they contact me.

[Nextoneplease in reply to Antschi]

Well….I do understand that you’re trying to follow the advice given.

But…..if you get the visual symptoms again before the rheumatologist sees you, I would definitely go to an A&E department, explain your history and insist that you are seen. Every A&E should have a protocol for dealing with GCA as a medical emergency. Please don’t delay, if the need arises. You know the risks.

Take care and let us know how you get on.

All the best to you xx

[Antschi in reply to Nextoneplease]

You are right of course I should go to A&E. I just get so tired of the struggle in order to see someone in the health system and not to be treated like a time waster.All the best

[Nextoneplease in reply to Antschi]

I do understand. Sometimes it feels like a miracle to come across a helpful medic who listens and is available…..but they do exist! Please take care of yourself, go to A&E if you have visual symptoms. We’re all here for you. Don’t let the system get you down. Hugs xx

[Bluey-1 in reply to Antschi]

You may get better treatment if you go straight to Eye Casualty if there is one at your hospital. I had excellent assessment and treatment when diagnosed June 2022 and was told to return immediately if I had any eye problems.

[autumnlass in reply to Bluey-1]

Very true. Eye Department NHS where I live fantastic too.

[HeronNS in reply to Antschi]

Well, after the JC exclamation ... I went to my eye doctor, an ophthalmologist, after being on pred for a few months to make sure there were no signs of GCA. He did find increased ocular pressure (since resolved) and even after several years still monitors me annually, but no signs of GCA. During the course of that appointment he talked to me about GCA and pred and told me far more than my GP had done when diagnosing PMR. He also said GCA was as serious as a stroke. There is NO WAY that someone with a diagnosis of GCA, or even pre-diagnosis with your symptoms, should be shuffled off the way you have been.

Perhaps print off a copy of this and have it with you to hand to the next doctor failing to treat you adequately because they don't know enough:

reviewofoptometry.com/artic...

[prunus in reply to Antschi]

That stuns me of the Drs there. As I've said on this forum before, I was nine days in an ordinary hospital before the correct diagnoses of GCA, but they are supposed to be specialists and more is expected from them. Obviously not. That is frightening.

[Missus835 in reply to Antschi]

Wow! That's scary to me. Whatever happend to I don't know much, but I'll refer you to someone who does? Maybe go to your equivalent of our ER?

[PMRpro Ambassador in reply to Antschi]

That's not lengthy!

But jeepers doesn't come near, I'd be banned if I said what I thought.

[Frewen1 in reply to PMRpro]

Exactly, on both counts. A shocking story

[Antschi]

Thanks again SnazzyD

[DorsetLady PMRGCAuk volunteer]

Have found similar information to  SnazzyD … unfortunately I am included in those that lost sight in one eye… pre diagnosis. GP on completely wrong track. But once diagnosed in A&E it was treated very seriously.

[Antschi in reply to DorsetLady]

So sorry to hear about your loss of sight in one eye. I have taken your and other members' advice and have spent most of today in A&E at my local hospital.I am so happy to be able to report that all is well. The blood test was normal, the Dr was kind and told me several times that I had done the right thing in coming to A&E.

Thank you all so much for your valuable advice.

[Nextoneplease in reply to Antschi]

Good news Antschi 👍

Now I hope you have a well earned rest x

[DorsetLady PMRGCAuk volunteer in reply to Antschi]

Good to hear

[PMRpro Ambassador]

This

ncbi.nlm.nih.gov/pmc/articl....

say

"High physician awareness, prompt diagnosis and treatment initiation in GCA are important to avoid disease-related damage, especially visual impairment.1–10 Blindness continues to occur in 20% of GCA cases, although this rate is lower with early diagnosis.8 Our case was notable for the appearance of blindness despite repeated normal visual explorations and the fact that this occurred 3 weeks after diagnosis and initiation of prednisolone. Review of the patient’s course has identified several learning points that merit emphasis and may have influenced his outcome."

I think maybe a copy to all concerned wouldn't come amiss!!! It was a missed diagnosis that left someone blind that set Baskhar Dasgupta off on his crusade.

[Nextoneplease in reply to PMRpro]

Hi PMRpro 😊

Am I right in thinking that a simple eye examination may miss GCA if only the eye is looked at - because it’s the optic nerve that’s affected by reduced blood supply, and this may take time to show up. My optician couldn’t see any damage to the eye but my symptoms of headache, jaw pain etc led to him referring me to the eye hospital for what he thought would be a more advanced assessment (it wasn’t, as far as I could tell).

Just a query, hope you can help x

[PMRpro Ambassador in reply to Nextoneplease]

The optician MIGHT see that the optic nerve disc where it attaches to the retina is enlarged, pale and swollen IF the blood supply to the optic nerve has been compromised for a time. But that may not occur if the stoppage of the blood flow to the optic nerve is sudden - like a stroke or heart attack which are the same mechanism. And you can have GCA without the longer effect on the blood flow if the inflammation is at other sites. It is a guide - but it is not definitive. The same applies to the hospital - often the optician has more sophisticated equipment than they do and that is the reasons for the MECS and UES eyecare services.

[Nextoneplease in reply to PMRpro]

Thank you pro 😊

That’s pretty much what I thought, but I’d never seen it written down so clearly before. My optician had looked at the optic nerve disc (he’s in the MECS scheme) and it seemed fine (he showed me the images) but he was evidently concerned by my symptoms….

So a patient with concerns about GCA in the UK is just as well advised to go to A&E or to rheumatology, as to an eye hospital?

[PMRpro Ambassador in reply to Nextoneplease]

Probably - if you have visual symptoms and clear other GCA symptoms it is probably 50/50 since the eye hospital might be more helpful with the visual symptoms. The ED is also so/so, my daughter's unit would be OK, Yorkshire is fairly up on recognising GCA at pre-hospital level, even paramedics are taught the signs!

[Nextoneplease in reply to PMRpro]

Thank you pro 😊

[piglette]

I read somewhere that people affected with any sort of blindness is 11% with GCA, it also said that it should be 0% if doctors were trained properly in the symptoms of GCA.

[PMRpro Ambassador in reply to piglette]

What about occult GCA? No symptoms pre-visual loss at all.

[piglette in reply to PMRpro]

I must admit I did think that. In fact Dr Dasgupta also said that if the government got their act together and sorted out the NHS, no one would go blind because of GCA.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Wishful thinking!

[piglette in reply to DorsetLady]

Having heard some stories onto this board I do think that the number of people who have suffered blindness caused by GCA could be reduced if doctors were better trained and informed.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

one included here for sure….

[Poshcards]

sadlu we didnt know my mum had this, she lost vision in first eye at age 70 and by aged 72 the other eye went, then we found out it gca x

[Nextoneplease in reply to Poshcards]

Sorry to hear this Poshcards 😟And no medics picked it up after the first eye…..

[Poshcards in reply to Nextoneplease]

Sadly not, this was about35 years ago now x

[Nextoneplease in reply to Poshcards]

Still, your poor mum xx

[autumnlass in reply to Nextoneplease]

😢

[Antschi in reply to Poshcards]

Your poor mother and your poor family, I feel for you

[autumnlass in reply to Poshcards]

😢