I am repeating this post in the hope of more replies....
I haven't met or come across others (apart from DorsetLady) who've lost sight through GCA, and would be interested to know of different experiences of sight loss.
My first sign of GCA was jaw claudication, 10 months after being diagnosed with PMR, when my Pred dose was down to 6. The GP shot me up to 60 immediately, nasty shock but she said we must save your sight. I had a biopsy confirming GCA, but no headaches or visual symptoms. One Wednesday evening six months later (this excited the rheumatologists as the time lapse between diagnosis and sight loss was unusual), Pred now down to 9, I noticed a small dark mark on the upper vision of my right eye - no other symptoms - and went straight to my local A&E. It was the first day of the junior doctor strike (although that may not have been a factor) and the young man who looked down the machine gave me a tube of cream for a scratch on my cornea. I saw my GP and the Eye Unit during the next two days but in the end made an appointment with an optician, who took a photo of the back of my eye which showed a haemorrhage in my optic nerve. After that it was St George's, the closest out-of-hours eye emergency (Saturday by now), and was there 11 hours. Basically there was no treatment other than high doses of pred... I saw a private consultant a few days later, who confirmed I'd had an AION (anterior ischaemic optic neuropathy), basically a stroke in the optic nerve. He was so grave about it I finally understood I would be permanently virtually blind in that eye.
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Hobbitses
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"One Wednesday evening six months later (this excited the rheumatologists as the time lapse between diagnosis and sight loss was unusual),"
I read a paper a couple of days ago about using alternate day dosing as a reduction approach, reducing from 60mg daily to 60mg on alternate days. The comment made was that the rate of late loss of vision (like yours) was extremely high - it is the basis for not recommending alternate day dosing for GCA.
When will doctors learn that, while the side effects of high dose of pred are considerable, they are peanuts compared with the alternative? To have reduced from 60 to 9 in 6 months was exceptionally fast I feel and must be considered to have had a bearing on the result. Your poor GP originally - they did their best. Jaw claudication is regarded as a cardinal symptom for risk to vision.
Strange - on the first day of the JD strike I'd have thought you might have seen someone more experienced.
Just wandering what some of your side effects were? I know everyone is different, but just curious what people have seen. I have already came to love this group of people. Bless my poor husband, I cannot share anything with him or he gets so upset that I have to comfort him, so this is sadly my only support group.
Initially a great sense of euphoria- hyper active - could talk for England!
After about a month difficulty with sleeping - would drop off okay, but then woke any time between 2.30 and 5am and no way could I get back to sleep. So I didn’t wake up hubby I’d get up and do some work on the PC or something quiet. It was summer so a lot of early cups of tea in the garden. Got a bit ratty (cross, short-tempered) around that time as well. Fortunately my sleeplessness soon went - after about 6 weeks. It does affect some a lot longer.
Blood pressure and sugars slightly raised as were eye pressures, but not enough to need additional medication. All reduced back to normal as I reduced Pred.
Usual thinning skin which bruised easily and if knocked a bit harder bled. Occasional bleed in eye (quite normal, but looks worse than it is).
Pred induced cataract on “good” eye - successfully replaced in 2014 (about 2&half years after starting Pred).
Couple of bouts of oral thrush early days.
Enough to go on with, but all manageable.
Sorry you can’t discuss with hubby - that does make it hard. Mine was very good the first 6 months although he was very unwell himself - he had to start driving again because I didn’t feel confident enough to initially and I think it gave him a sense of purpose. Unfortunately I lost him the following year which obviously wasn’t easy, but it is what it is.
We were married 46years - so life was very strange to start with- but you have to go on. Life is very different without him, but I’ve got great children and grandchildren and good friends. But it’s not the same for sure.
I never did alternate day dosing. But at the beginning of this enforced journey (PMR 2015, GCA 2016) I just did what I was told by the experts.... I had bags of intravenous Pred (whatever it's called) too late to make a difference.
As for the JD doc, I supposed there wasn't anyone else available. There is no emergency eye unit at that hospital. When I told him I had GCA I'm not sure he knew what I was talking about, but I could be wrong - he did say go and see your GP and Rheumatologist asap as I left.
Not exactly, means it happens when chewing, and then goes away when you stop chewing. One test is to give the patient some chewing gum apparently!
see Wikipedia explanation-
Jaw claudication is pain in the jaw associated with chewing. It is a classic symptom of Giant-cell arteritis, but can be confused with symptoms of Temporomandibular joint disease, Rheumatoid arthritis of the temporomandibular joint, Myasthenia gravis, tumors of the Parotid gland, or occlusion or stenosis of the External carotid artery. The term is derived by analogy from claudication of the leg, where pain is caused by arterial insufficiency.
Thanks , it does. I did look it up but the more I read about it the less sure I was that I understood what it was in effect. I have a tendency to clench my jaw, particularly at night, and sometimes it aches. This is different though, I think!
Hi Hobbutses. I was very sorry to read your story. I lost my sight in left eye on 11 March 2010. I had claudication of the jaw. My case is also documented with this forum and I also spoke at a forum in London about my experiences a few years ago. Briefly my GP wouldn't believe I had GCA despite the fact he had recently been on a seminar in London for PMR and GCA and supposed to have been aware of the symptoms He told me to go off and enjoy my holiday in Spain and we would discuss it on my return. 4 days into my holiday I woke up blind in left eye. Luckily I was near Cordoba Hospital where I had amazing treatment and who undoubtedly saved me from going blind. On my return to England I was told I was lucky it happened in Spain and not England because I wouldn't have received a third of the treatment here. And how right they were. For the first 2 years I had to pay privately to see a Rheumatologist as the waiting here in the SE is 18 months. I haven't seen one for well over two years when I was told I don't have GCA it only lasts for two years. I know one or two of you will love that comment!! It was a terrible shock in the beginning but I now rarely think about it and lead an active life. Good luck.
I hope you made a complaint about that GP? There is the concept of the fast-track clinics - but the weak point is the GPs who can't put 2 and 2 together even when they have a calculator! My family's experiences with GPs does NOT inspire us with confidence - and recently we're wondering about hospital doctors too!!!!
No I didn't. I was so traumatised by losing my sight I couldn't stand the stress of bringing a formal case against him. Months later when my private Rheumatologist asked him about it he said I must have misunderstood him!!
Liar, liar, pants on fire! They make SOOOOO angry. Especially when it has the devastating results you have experienced. Thay make such a fuss about using pred - but what it is protecting is priceless.
Absolute rubbish reply from GP! I can understand you didn’t want to proceed at the time , and maybe you are too late now, but it might be worth considering if you feel up to it.
I was diagnosed with GCA about six month ago. I didn't have jaw claudication i.e. jaw pain when chewing, but did have severe stabbing earache in and behind the ear. My rheumy says this is the same as jaw claudication. Has anyone else heard this?
Diagnosed w GCA in Nov 2016. All the classic symptoms including a bit of jaw claudication, and also intermittent earache, sinus pain, scalp pain, terribly severe morning headache . . . . Also pain in the neck! I should think they're all interconnected. Plus overwhelming fatigue.
Thinking back makes me realise how much better I am now. Still not 100%, but miles better than then. Take heart!
I know how you feel about the pain. Looking back I wonder how I coped with it. I guess I just lived with the hope that it would be gone tomorrow! Glad to hear you are feeling so much better now. Thank goodness for steroids. I do feel pretty good and normal most of the time now and sometimes forget that I am unwell! I try to keep positive, look after myself and arm myself with as much information about the disease as I can.
Claudication just means pain when exercising and the area affected is being fed by an artery that is narrowed and therefore not pumping enough blood through. Normally the pain stops when you stop using those particular muscles - although you do sometimes get it at rest as well. Depends how badly the artery is affected.
Was your pain there all the time or just when eating?
It started off as intermittent pain, then became almost constant which was what drove me back to the GP and a GCA diagnosis. It was never linked to eating. My rheumy says the ear is linked to the jaw and hence his conclusion I had jaw claudication. Something else he said is troubling. My GP suggested I could stop the daily aspirin I was prescribed at the beginning and after doing some research I did stop it, but my rheumy has warned me if I don't take it I could lose my sight on a relapse. I had thought I was more or less out of the woods as far as sight loss is concerned, but there is always that niggling fear.
When I started Pred it was automatic procedure to prescribe aspirin (was already on it anyway for HBP) - but now the view is to prescribe if needed for individual patient. Your Rheumy may think that, or he may be of the old school.
All it does is, it thins the blood so easier to get around arteries and less likely to clot.
I stopped aspirin when stopped Pred because my blood pressure had returned to normal- but am on it short term again following surgery.
Personally I don’t think an aspirin per se is going to save your sight, it’s the Pred which is keeping the arteries clear of inflammation that’s doing that. Although, it may help the blood circulate easier.
Thank you for your reassuring comments. As long as my GP thinks it is OK to stop taking aspirin and until I am advised otherwise by him, I am happy not to take it. On the possible link between jaw claudication and ear pain, are you aware of that? I ask because there seems to be an increased risk of sight loss where JC was present at diagnosis. I am currently on 12.5mg pred and the next two monthly tapers are 10mg and 9mg. Might the reduction from 12.5 to 10 be too much at once?
The problem with the ear pain is it can be confused with TMJ (TemporoMandibular Joint) problems as can jaw pain. Plus it not one of the commonest symptoms for GCA. I can't recall that I had it to any great degree - the main problem was the jaw.
As for tapering - 12.5mg to 10mg may well be too much, it is for many. I would try 12.5 to 11mg and from then on 1mg per month. Or if you've got plenty of 2.5mg (uncoated) you could cut in half - so 12.5mg -11.25mg initially.
The fact you have jaw pain means the GCA is affecting particular arteries - that are upstream from the artery that supplies the optic nerve. The supply to the ear is also deriving from the same artery.
I wouldn't go directly from 12.5 to 10 either - but I am a supporter of slower reductions at all levels!
Thank you for that. It seems then that the risk to sight is the same with JC as ear pain? All the more reason to be cautious with tapering as you suggest.
The ear pain/symptoms aspect is still a work in progess - it is listed in some sources as a symptom but many doctors seem oblivious. A study was started after a pilot survey showed a very large proportion of GCA patients have ear problems - hearing loss, pain and balance issues. It seems quite clear that it is just as much part of GCA as eyes and jaws - but it must be proven and established.
I have in fact had some hearing loss since GCA. I awoke one day with my right ear (the same one that had the GCA pains) completely blocked. A GP diagnosed it as possible glue ear as there was no wax build up or obvious inflammation. My hearing came back gradually over about the next couple of months, but is not quite so good as in the other ear. I did suggest at the time that it might be GCA related, but the GP dismissed that.
I hope they are all correct. Susan Pugmire seemed a bit dilatory originally - no idea if she's improved or whether there was another problem. I'm assuming you are in the UK!
I know it is on here somewhere but finding it not so easy (for me at least!).
I developed tinnitus while on prednisone which has affected my hearing. I am currently on 1mg pred and still have it as well as jaw claudication. Will they ever go away?
If you have jaw claudication you probably need more pred - there is no virtue in taking an inadequate dose.
I had mild tinnitus due to undiagnosed PMR for a few years - it did eventually go away once I was put on pred. I suppose what is actually causing it - and whether the damage will repair.
My BP is higher over the last few months (currently being investigated, along with occasional atrial fibrillation). After the sight scare it was high and I was on aspirin and a 'Mickey Mouse dose' of Amlodopine but was taken off both those at different stages.
How do you ever know if/when GCA is not a threat any more? PMR is easy to recognise - you ache - but with GCA you can never feel safe...
I had slightly raised BP and atrial fibrillation with PMR long before pred. Lots of doctors will blame both on pred but for me it obviously wasn't. The cardiologist thinks it is due to the autoimmune part of PMR having damaged the electrical cells in the heart. And it is now very obvious - a flare leads to increasing a/f and I need more pred to manage it since the a/f medication doesn't.
Interesting. I am just down to 3 1/2 mg Pred, and am noticing aching thigh bones - not hips - in the mornings. Flare? Dunno - I could just need a new bed! Have lost weight, always was 56k/8st 9 but gradually over 5 years, now 47k/7st 6.
Propafenone as anti-arrythmic, plus losartan and bisoprolol. I was tried with an ACE inhibitor but had an allergic reaction so that was stopped pdq once I found a senior doctor who would listen to me - the ward staff had given me an antihistamine and a wet flannel...
Hobbitses, you have expressed my fears exactly. I have had a couple of flare scares, the last one about 10 days after a recent taper, when I had a light pain in and behind the ear, just like before diagnosis but much much less severe. The pain lasted 2 to 3 days and hasn't returned. I too have raised BP since GCA and am on 5mg amlodipine which has lowered my BP a little but not enough, and I also have palpitations and arrhythmia. I've had an ECG which my GP is happy with. I'm hoping that as I reduce the pred my BP will come down and the palpitations will also lessen - I think they are less frequent and milder already in fact. But I agree with you that we have to be on high alert, without, as Dorsetlady so wisely says, becoming paranoid and stressed.
"How do you ever know if/when GCA is not a threat any more? PMR is easy to recognise - you ache - but with GCA you can never feel safe..."
If your GCA returns you are likely to get pain - similar to that pre-diagnosis - not as strong, and hopefully you would recognize it early and do something about it.
I can assure you - you can feel safe with GCA - once I was diagnosed and the initial shock of sight loss was over, I was fine.
But I was allowed to taper slowly, and every month we discussed my symptoms (or rather lack of them) bloods were tested, and between us, my GP and I agreed the next step.
If you remain at the correct level of Pred that YOU need and think about what you are doing you don't have to fear a flare.
Most people are more afraid of what MIGHT happen, and I can understand that. But if everybody is being sensible and aware of the danger (post diagnosis) it usually means they can be averted.
If you are out and about - you are more likely to be injured on the roads than lose your sight through diagnosed GCA.
Please try and stop worrying, it will just gnaw at you, and stop you getting on with life.
My late hubby always said, there’s not a lot you can do about it, if the bullet’s got your name on it, it’s got your name on it!
In hindsight he was right, I nearly lost him 3 times, but he always fought his way back - obviously dodged it. But of course, THE one did get him in the end, but we’d had another 17 years together. It is what it is.
Yes, there's no getting away from that - but very tough to lose your other half. Mine is slowly getting over a lung op last October. Puts things in perspective.
It seems a long time ago now, Asbeck (2016) - I had to give up driving which was a big life-change, but I've got used to it. It took 18 months/a year for my brain to adapt to the sight change, but since then two cataract operations have sent it into orbit again - all part of life's rich tapestry!
Why did you give up driving- or were both eyes affected? Fortunately my good eye is that - good - so I can drive. No restrictions from Driving Agency, Insurance Co nor Doctors. If your one eye can pass the sight test- then all good. In fact my optometrist told me at last test my sight was good enough to fly a plane - but I don’t think I’ll bother now!
Although the tests said I could drive, same as you, I knew I wasn't safe. They can only test each eye individually, but not the binocular (both eyes) vision - what I actually see. The fog in my bad eye casts a blur over the binocular vision - it's always been very difficult to explain - but I walk into people (and door edges) and, in the car, gasp and jump when pedestrians or cyclists seem to appear out of nowhere - too late for their safety if I were driving. My husband has witnessed my passenger reactions and agrees I wouldn't be safe.
My sight had settled after 18 months/two years, but now the cataracts have been done - the second one two weeks ago - it needs to settle again. The DVLA wanted me to renew my licence last year - at that point (before the cataracts were done) the ophthalmologist said I wouldn't qualify to drive, so I gave up the licence. It was a sad decision, but I think I probably wouldn't have the confidence now anyway. Sorry to burble on!
I’m always please to hear of others experiences, as you say there are so few of us one-eyed monsters on here (fortunately).
Have they done cataract surgery on both eyes? If so, then your sight loss is different to mine - no point in doing “lost” eye. The light still comes into that one, so I know daylight from night, and can see very vague outlines of some items in my right bottom quadrant - say if I hold my hand close to my cheek.
Fortunately it doesn’t affect the good eye, which is obviously the difference for you and me.
I know what you mean about people suddenly appearing from nowhere and bumping into things, fortunately that only seemed to last about 6 months for me - although I’m still not always aware of people behind me on the right side.
Yes I think I have a tiny bit more vision than you in the bad eye - but it seems not to be an advantage! Everyone else I know with one eye (there seem to be a lot) drives quite happily.
Actually my optometrist said don’t do that. If you do, the “bad” eye gives up, and doesn’t move in sequence with your good eye, and ends up “wandering” as Hobbitses says.
Fortunately I didn’t have to make the decision (it was just a question I posed early days when I was struggling before things settled themselves). Had it meant driving or not driving, there would have been no choice.
Which is why I think complete loss (or at least no useful sight) in one eye gives a better outcome than one okay and one partial. Second option is too much for brain to cope with.
A parallel is the use of two different focus lens for cataracts - one for distance, one for near. I did that with contacts for a long time, I found it brilliant and only needed "top up" specs for driving (for my comfort, not DVLA's). My MIL, on the other hand, couldn't cope after cataract surgery and insisted on specs.
I guess that depends on how much useful sight there is in damaged eye - mine was too far gone for any remedial action - or at least the optical nerve was too damaged. Maybe in years to come they may be able to do something
You’re right, I don’t think it is an advantage to have some sight in affected eye, the brain is working overtime trying to cope.
I find that eye does get tired sometimes if I’ve been reading or watching tv a lot, but generally it’s not a problem as the good eye copes well on its own
Could also depend on whether it was the dominant eye you lost as well I suppose.
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Thank you so much for re-posting this. I am under suspicion of GCA at the moment - rather a long story involving missed opportunities for a proper diagnosis - and your post has encouraged me to be extra careful I am not leaning towards discounting the theory. I wish you the very best possible future.
Thanks Pippah45, glad to know the re-posting was a help to you (I certainly learnt a lot from the resulting correspondence!) and I hope you get the right diagnosis and treatment. All the best for your future too.
This is an invaluable re-posting Hobbitses and I for one really appreciate you sharing your experiences. It is an excellent 'reminder' that taking Prednisone is as PMRpro says 'peanuts' cf. the possible alternatives - as much as we all like to whinge about various 'side effects'. Given my mother in the 1970's had undiagnosed GCA and eventually lost nearly all her eyesight and had multiple 'small' strokes as a consequence I recognise how 'fortunate' I am to have had access to that much maligned drug. But I am so very sorry you lost your eyesight in one eye and everybody here would feel the same.
Thanks Rimmy. Yes, Pred is king - I don't have too much in the way of side effects, praise the Lord, and I've slowly adjusted to the sight. So sorry about your poor Mum though... all the best for your own journey.
Thanks for that. Well Off tomorrow To start the appts firstly to see Dr in Newcastle who is specializing in Gca so hope I don’t frighten her with all my questions and my diaries from 2017 18 19 20. 🙃 having a ultra sound. Then TomOrrow I see my own doctor who I haven’t seen since February maybe should take a picture as I look nothing like myself with moon, puffy eyelids and brows and stagger. Then Thursday ECG and pick up Meds high if required. Have type 1 diabetes now and starting on metformin prednisone related We think. Fingers crossed for this week folks. Better I’m being seen than left. 🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼
You don't have Type 1 diabetes if it is pred-related and you are on metformin - Type 1 is autoimmune itself and means the insulin producing cells have been destroyed so must be managed with insulin injections.
By the way - had you noticed this post is over 2 years old?
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