New optometrist appointment yesterday and he used a lot of the latest equipment which luckily provided positive results.
On one he showed thickening in one eye and not the other and stated that this was due to my condition GCA.
I wrongly assumed that this would be resolved by taking steroids?
I woke in the night worrying about it. Esp as it’s in my ‘good eye’. I should have asked more questions!
What do you mean by ‘thickening’…. Do you mean beginnings of a cataract or something else?
Sorry I did sound vague. I’ve already had steroid cataracts and ops. He showed both eyes, wiggly lines like veins on both of course, but one side showed the main squiggly line much thicker and this he said is due to GCA. I had no signs of glaucoma thankfully. He’s a respected senior optometrist. I was going to go down to 6mg today but I’m going to get a blood test this week first. I just wish I knew more about how GCA presents in the eye and when to panic really. He wasn’t concerned.
Not sure about that... do they look bloodshot, or was it just picked up by his specialised equipment?
Picked up by the latest equipment. No nothing wrong. I was going for new specs but I also ask for all the tests each time. I guess I ought to look into this a bit more. I’ve never thought about it before. I did have a problem with that eye when the arteries became prominent above both eyes when first diagnosed. I had a sort of white patch in that eye but it disappeared after a few hours. Went to Eye A&E straight from main A&E and nothing visible at that time. I just wondered if anyone had any further knowledge about GCA and how it shows in the eyes.
"he showed thickening in one eye "
Thickening of what? If it was retinal veins - unlikely to be directly due to GCA since GCA only affects arteries.
ncbi.nlm.nih.gov/pmc/articl...
describes various changes found - and the thickening referred to in the retina is in the nerve layers which may have been what you saw.
Otherwise, thickening is seen in arteries, the temporal artery and the carotid arteries, which is due to the swelling due to the giant cells that give the disease its name. But that is nowhere near the retina.
YOUR role in identifying a problem is to report any visual symptoms you experience and not be in denial or wait to seek advice.
That’s useful information thank you. I will do a bit of research myself too. When you read about sudden sight loss in GCA it is extremely worrying and I was hoping regular scan mights help identify issues. Thanks for the info that really helps. You’re very kind to provide this.
They may show if there is long term, low level poor blood supply to the optic nerve. But beyond that, it is like a stroke. If a clot blocks an artery, everything downstream of that gets less oxygen and nutrients and only immediate treatment will have a chance of an improvement. There is often no advance warning, it comes out of the blue. But it is pretty rare and once you are on pred the risk is lower, not entirely banished but improved.
Thanks for that info. My poor Mother had an occipital stroke and died at the end of that same year. When she came home from the stroke ward she had raised arteries on her forehead which I hadn’t seen before or knew about and I don’t think the hospital noticed. Bless her, she said they come and go and wasn’t bothered! I had started to use techniques given to me to help her learn to read again, before she ended up back in hospital. Looking back at photos of her at that stage I can see she had what I ended up getting but it wasn’t diagnosed. Anyway thanks again. It’s so useful having you guys to chat to about these things otherwise you just mull them over in your mind. Big respect and thank you!
There is an article in a South Wales paper about a 37 year old man who died of a stroke - which the pathologist found at post mortem and diagnosed as having been due to undiagnosed GCA. Something maybe more GPs should be told about - the risks of undiagnosed GCA and that young people can develop it too.
Definitely needs to be brought to their attention. What a great shame that lives are being lost to GCA. I really feel there ought to be local ambassadors to go talk to practices about all forms of vasculitis. In particular PMR/GCA. Rheumatologists spread themselves so thinly that it must be hard for them too. They wouldn’t get time to talk to practices. I think specialist nurse practitioners working with consultants might be better than the trainee consultant registrars who sometimes appear quite disinterested at appointments. Anyway enough of my moaning for today. Thank you for caring and taking the time to respond so informatively.
I agree with you. GPS do need to be better informed about GCA and Temporal Arteritis. Seems to me that this is an urgent problem as GCA appears to be increasing and Family Practice in UK as it used to be is no more. In the past you could rely on your GP to know you and your medical history and to take an interest in your progress.
Wow..I agree Pro...it doesn't matter what side of the pond you are on..UK..USA....they just aren't sufficiently informed, it rankles me. The MRI I had recently, the radiology tech had been doing it for 38 years.....and had never had a GCA patient. I don't think they see US sometimes....💞 Grammy goes balistic....
I have found all of this interesting. I have GCA (I think in remission) however a couple of days ago I could only see out of half of my good eye - the top part was white. So I rushed to the Emergency and after blood, CT and an exam by the ER Doc & Optomologist they said it had nothing to do with GCA but that I probably had a TIA. I refer to "good eye" because the other one has pachychoroid pigment epitheliopathy diagnosed 10 years ago. That is the thickening of the choroid. So, perhaps you also has a TIA?
Except GCA with loss of sight can be the same as a TIA or even a stroke, there is an interuption of blood supply to the optic nerve specifically. The difference is that the TIA symptoms resolve in under 24 hours, stroke doesn't. But there is no real way of telling the difference and an eye specialist is likely to start high dose pred "just in case" because they are all too aware of the devastation of total and irreversible loss of sight.
Thank you for your reply and I hope you are in remission but sorry you are having these eye issues. Have you got back your sight now?
The optometrist at the time I had the odd white imagine in my eye, thought it was a migraine symptom but I don’t know. Luckily it disappeared quickly and I’ve had nothing like it since. But you could be right!
I also have GCA, and reading your post filled me with questions. There have been lots of great discussions and suggestions here for you. Is an optometrist the same as an opthalmologist in the UK? Not in the States, it isn't. I read you have had private consults. Can you see an ophthalmologist or neuro-opthalmologist who is more skilled in assessing your optic nerve, etc.? I lost sight in one eye five years ago due to GCA {and that never should have happened, but it did} and am fiercely protective of my right eye and also the sight of someone like yourself.
GCA is unpredictable; you sound like you research a lot....I do not live in panic mode, but I know I am hypervigilant.....are your doctors sure your pred dose is adequate? Be well💞
I’m sorry to hear you lost some sight and I fully understand you being hyper vigilant. It’s nice to hear from you and your experiences, good to learn from one another
My consultant has a blood test waiting for me to take anytime this week and will advise re dose. I’ve tapered down several times and ended up going back up again. I know she wants to add steroid sparing meds but I would prefer to just come off pred without starting anything else unless I have no choice
We get free NHS eye tests from an optician or optometrist but most have more advanced equipment which you can pay extra for and that’s what I always do.
We’ve got ophthalmologists too and we can be referred to them under the NHS with specific eye conditions and even surgery. I could book to see one privately too and had started looking for someone my side of London. I’m going to see what the rheumatology consultant advises regarding the pred dose and then decide the next step.
Thanks Granmy80. You be well too 🤗
Sounds like you have a positive, hands-on attitude and an open mind. The UK is so far ahead of the US in its knowledge and 'fast-track' initial treatment and recognigion of GCA~!!!! It doesn't seem like to far a leap to look at GCA as an 'eye condition' where an ophthalmic assessment could be incorporated. You have such wonderful researchers there who focus on it. 💞
No, in the UK nowadays optometrist is really another name for an optician - they are more highly trained than opticians used to be: opticians can only dispense glasses made up in accordance with the prescription provided by an optometrist. So most optician shops in the UK will have either a fulltime trained optometrist onsite, often the owner of an independent, or one will visit at specified times plus shop and technical staff who help you choose frames and decide what sort of lenses the prescription should be made up in and then order the right lenses for the technical staff to make up, cutting the lens to the right shape and adjusting the frame to fit or doing repairs. It is sort of parallel to a pharmacy - the pharmacist plus dispensing staff who actually count out the pills and put them in bags for collection.
An opthalmologist has been to medical school and then specialised in "eyes".
opticalrevolution.co.uk/dif...
That would be the same as the states then. It's just that I don't hear people in the UK referencing Ophthalmology as frequently as they do here in the states. Heaven knows we have our own problems in our health system but with GCA I would think a specialist of the eye would be someone accessible. Maybe he is and I just don't hear it very often. I know for certain in my case had I not be referred to Ophthalmology and even a finer more specialized field I wouldn't be seeing a thing.
I'm just very interested and certainly not criticizing that health system that you have. My son daughter-in-law and grandchildren live in Nova Scotia and face challenges within that Health System.
...... and we certainly have them here in the usa!💕
My GCA was diagnosed by an ophthalmologist - but only because I was attended by the duty one in A&E [ED] when I went there with sight loss.
Seemingly in UK ophthalmologists are not automatically involved in GCA patients unless those patients have sight issues…. most only see rheumatologists.
That was a blessing that he was there at A&E~! Are ophthalmologist accessible to people if they have a bad flare? Do patients seek them out for cataracts?💞
My position was slightly different to many I was under ophthalmology department in local hospital for first few months - and later referred for cataract.. but that’s not necessarily the usual procedure. As PP said most GCA patient come under remit of Rheumy.
GCA tends to be under rheumies - historical presumably because it went along with PMR symptoms maybe. I can't remember who my optician in Scotland used to contact for a suspected GCA patient but it was very possibly the eye people who would then hand the patient over to rheumatology. He was as well qualified as most opthalmologists - because he trained as an optometrist and did research before realising all his mates at uni were rolling in it while he was struggling to keep his family and went into business!!!!
$$$$ It is the old money trick...it is doing the US in. I certainly believe the rheumys are qualified, but as mine said last time....."I don't have the equipment to see your optic nerve or disc." I think that is where the value lies; optic neuritis, neuralgia and even trigeminal neuralgia can be severe manifestations of GCA. At least on this side of the pond, the rheumatologist cannot see that at a visit. I was curious because I don't hear opthalmology mentioned very often.
Believe me...our system is flawed. My family in Canada doesn't have the same access....I guess we all do the best we can. The forum makes better patients of id and is one of the greatest gifts it has given me.💞
PMR?GCA
GCA and Elevation
Importance of regular eye exams with PMR/GCA
GCA Eyesight Anxiety
