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Father diagnosed with GCA with extreme vision loss

Hello everyone. I'm new to the group. I'm here because my father was diagnosed with GCA very recently. Unfortunately, he had very few, if any conclusive symptoms of the disease until he lost all vision in his left eye, and nearly all in his right eye on Christmas Eve. He was only started on steriods a week after vision loss, as the doctors were still grappling with a diagnosis. Everything that I've read indicates that vision loss due to GCA is irreversible. I'm looking for some hope that someone has had a different, more positive outcome. This has been difficult to say the least for our family, and we're devastated. Any help or insight would be greatly appreciated. I'm truly heartbroken for my father.

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I'm so sorry - what an awful thing to happen at any time, but at Christmas it seems even harsher - but I can't give you any hope I fear. I was talking about it with one of the top rheumies in the UK some time ago and she said she has never come across anyone with GCA whose vision loss improved meaningfully.

There is a proportion of GCA patients who have no signs or symptoms before waking one day with vision loss, it is usually called occult GCA and a guy called Hayreh has made a close study of it. This review paper mentions it

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

as occurring in 20% of GCA patients - and says earlier

"...This reinforces the point that any elderly patient presenting to the eye clinic with visual symptoms or eye pain should be considered to be a GCA suspect until proven otherwise. This mode of thinking will help minimize permanent vision loss in GCA patients."

Oh that more doctors had read it.

How old is he? Are you in the UK? Have you already been in touch with RNIB?

Please feel some virtual hugs from this group - we are all so aware that "there but for the grace of god go we".

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Thank you so much for your response. I appreciate your gentle way of delivering such horrible news. It's no different than I've seen elsewhere, it just hurts to get the confirmation. Christmas was very different this year. We live in the US, and my family had purposed to get together to celebrate this year. We had a lot of fun plans for the holidays, until this happened. It was extremely sudden and devastating to say the very least. My family is spread out over the country, and my parents live in a different state away from any other family. So, this is almost as hard on my mother as it is on my father, although I'm sure he'd beg to differ.

I had never heard of this until it was proposed, and it's hurtful to know that had more doctors been knowledgable and listened to their patients, this likely would've been prevented, or at the very least it would not have progressed to the level it has. I'm heartbroken for my father. Truly I am. My tears won't stop flowing.

Thank you again. I truly appreciate it.

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I am sure you are all devastated by the suddeness and awfulness of the situation. My father lost most of his sight from different illness within a few months. I have got to say the local rnib, cottage hospital and Opticians were really helpful in following months providing lots of equipment to make life easier. Hopefully as the shock dulls a little you can explore this with him. At the moment the only advice I can give is that you all take care of yourselves. I, like many, have done the running backwards and forwards to hospital worrying. Make sure you all eat and drink properly. Obvious but important. Get a little note book and write what you can remember of the past weeks down so you can get advice and ask right questions of medics. My very best wishes 🌻

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I am so sorry to hear your devastating news. I cannot imagine how awful it has been for you and your family and even worse, that it might have been prevented. This is the very situation the the PMRGCAUK charity is trying to make sure never happens again. It puts my gripes into proportion and makes me very thankful that I haven't had to deal with this myself.

As said above, please look after yourself in this as this is a long term major loss that you will all be reeling from for quite a while.

I send my thoughts and love to you all. xx

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(GCA, Diagnosed May, 2017, USA, Female 62)

Ohhh Tjoffrion, I am heartbroken for your father, mother, and family. It's the nightmare that we with GCA have.

When I presented to my Internal Med doctor (at a respected teaching hospital), I had a majority of the symptoms of GCA - increased blood markers, jaw pain, a monster headache, scalp tenderness, and a beaded artery sticking out of the side of my temple. However, neither she nor her resident/intern connected the dots to a diagnosis (even after touching the artery). I walked away with a new blood pressure medicine in my hand.

Weeks later, my best friend (a psychiatrist) suspected GCA (she had previously consulted on a GCA patient and thus connected the dots) and sent me on the path of diagnosis. My Rheumatologist explained to me that many Internal Med docs/Family Med docs will never see a GCA patient during the lifetime of their practice. I'm not sure if that's truly the case, but it did allow me to 'forgive' my Internal Med doc. And she's seen it now and I know that she will never miss it again. But it does put a spotlight on the training of physicians for this disease (or more aptly, the lack of training.) I will say that I had never heard of either GCA or PMR before being diagnosed with it.

Please bookmark this site for those that will be caring for you father. There will be a lot of questions arise in the treatment of his illness and you'll find help here. You can't possibly know now, but finding this site is a blessing. We have true experts here that have walked and are walking through the fires of this illness and are willing to hold the hands of others as we, too, fight the illness.

A huge hug to you! Prayers to your father and family!

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tjoffrian, my heart goes out to you, your father and all your loved ones at your father’s sad plight, even the more tragic knowing that had it been diagnosed, might have been prevented. I have had GCA and although my vision felt compromised prior to diagnosis and in the weeks following, mercifully my sight was saved. I met someone last year whose Mum had sadly just experienced the same as your dear Dad and I just wish I could give you a hug right now as I gave to her then. You will be in turmoil right now, but when you feel ready do make contact with the services in your country that help people with vision loss. A big hug, albeit a virtual one.xx

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Hello

Everyone on this forum I am sure will really be feeling for your Dad, yourself and your family following this very traumatic event. Many years ago my mother lost much of her eyesight - inexplicably at the time and now with GCA myself I have realised why. This forum has many wonderful and knowledgeable people who will be able to point you in very helpful directions as time goes by - I know that they would also like to be able to do much more than they will can at this point - but we will all be 'here' to be any support we can possibly be.

One word of positivity and 'hope' I can offer from my own family's experience - is to say that my mother eventually managed to continue to enjoy aspects of her life - several of which she had previously paid much less attention to - especially music which she came to feel was 'transformative' - but I realise at this point you are feeling extremely shocked and any such considerations are for quite a way down the track - thinking of you all ...

All good wishes

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Hello,

My name is Brian, I am 62, had Polymyalgia since the end of 2012, been on Prednisolone steroids twice over that time, but had been feeling fit and healthy for most of the time in 2017. Then out of the blue, noticed a shadow in my vision in the top part of my left eye vision on 8 October 2017, still there on 10 October, had emergency appointment at Opticians on 11 October, on that day I still had 20/20 vision in my left eye, but a scan there showed a faint shadow in part of my eye - I was referred to the eye dept of a local hospital and was seen there 2 days later on 13 October. They found that in just that 2 days the optic nerves in my left eye had become badly inflamed - I told them about having Polymyalgia - they put me on high dose prednisolone steroids that night (60 mgs), I went back the next morning and the results of a blood test they did the night before showed inflammation readings. An Arterial biopsy a few days later confirmed GCA. They told me that it was too late to do anything about my left eye and the steroids were to protect my right eye.

Like your father, I had had none of the GCA symptoms. I was in total shock when they said they could do nothing about the sight loss in my left eye. I am just hoping that the vision in my right eye is going to be okay. I am currently off sick from my job, as I have blurred vision in my right eye, which the eye doctors say is most likely being caused by the high steroid dose causing swelling in my right eye. My job depends on my right eye being okay. So it is a waiting game.

How old is your father? Does he have Polymyalgia or Fibromyalgia? Was he on the steroids when he lost the vision in his right eye?

I am still in total shock at my diagnosis and sight loss 3 months down the line. I know how your father must be feeling.

I asked at the hospital about possible stem cell treatments, but they said stem cell treatment for optic nerve damage is generations away. I noticed that some clinics and some trials did tend to suggest regeneration of optic nerves that are damaged, but the eye doctors at the hospital and Rheumatologist were very sceptical about this.

Sorry I can not give you any more positive information. Doctors do not seem to know what really causes the immune system to attack the body like in these cases. I do not think it is connected to lifestyle, as I was generally healthy before the Polymyalgia started, even though I was stressed at the breakdown of my marriage, and some say that stress is a factor in a lot of diseases.

Best wishes,

Brian

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I'm very sorry to hear your story - if only you hadn't had to wait that 2 days. GCA is a medical emergency - just like a stroke or a heart attack and no--one would think it acceptable to wait for 2 days before dealing with them would they?

Your other eye should be OK - if the second eye is going to lose vision too it is usually in the first couple of weeks. DorsetLady on here lost her sight in one eye and speaks of her being on tenterhooks until the 2 weeks was up and the other eye was still OK.

Unfortunately the optic nerve is damaged beyond repair - the promises of stem cell therapies on the internet are greatly exaggerated in the hope that people will pay for the offered therapies to make the clinics a lot of money. And they do.

All the best

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Thank you for your reply and reassurance.

Hindsight is a wonderful thing as they say, but looking back on it I should have seen my doctor or phoned the NHS Emergency Helpline number 111 as soon as I noticed the shadow in my vision. Because it was my eye, and I had had no GCA symptoms, I went to see an optician (I did not even need to wear spectacles before). Fate seemed to conspire against me, as I had seen my doctor the Wednesday before on an unrelated matter, and if I had seen him on that Wednesday with the shadow in my eye the 2 extra days might have made a big difference. Also, I went to the opticians with my young son the Saturday morning before the shadow appeared on the Sunday, when he had an appointment there - if I had noticed the shadow 36 hours earlier I would have mentioned it that Saturday morning, so once again, that could have made a huge difference.

The hospital had tried to contact me on the Thursday after the referral from the opticians the day before, so they acted quickly, and left a message saying that, and that I needed to go there the next day (Friday) which I did, so no blame on them. It was just a case of me not realising at the time just how important it was to act quickly.

King regards,

Brian

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It is probably the case - though obviously your optician did already see something and mine in Scotland would have phoned the hospital and sent me there with a letter clutched in my sweaty little paw. I know that because I have seen him do it. The optician you saw also needs to be told that if they see it again that is the thing to do. Of course - there is no saying whether a GP would have recognised the significance either. GCA is so rare that most GPs will never see a case in their professional lives.

But you will learn to live with it - and at least only one was affected.

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I suppose that is the problem, for doctors and especially opticians, that it is so rare that they do not recognise it in some cases. If I had mentioned that I had Polymyalgia to the optician at the time, maybe the link might have been made. There is so much hindsight involved, and it is frustrating that this can not be put right.

I said to someone that I could do with stepping into Dr Who's Tardis and going back in time to the first instance I noticed a problem with my left eye, and then doing something about it immediately to hopefully prevent my sight loss.

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If your doctor who diagnosed PMR had also warned you what to look out for - or you had found us earlier - you would have known. One in six PMR patients goes on to develop GCA at some point - you need to know what to watch out for. But some doctors forget or don't know how important it is - and others think they are upsetting their patients with scare stories. No - just common sense.

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The thing about my case is that I had no warning symptoms whatsoever, in fact, I had been feeling the best I had done for a few years before the GCA happened.

At first at the end of 2012, the symptoms I had were appropriate to Fybromyalgia, as a lot of the pains were in my legs. I was referred to a Rheumatologist who said it was Fybromyalgia. Then, when a report was sent from her to my doctor, it said Polymyalgia. I asked my doctor why the change - he said there was a mental and social stigma around having Fybromyalgia. I did not understand what he was talking about - almost like it was "cloak and dagger" for some reason.

I know that GCA can occur in people who do not have, and have not had, Polymyalgia.

No-one knows why any of them occur, but do you think stress can be a cause? Also, do you think it can be inherited?

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Oh yes, stress can be a factor though probably it was the final straw that broke the immune system's back and sent it haywire. There is a genetic component in that certain ethnic groups are more or less likely to develop it: people with a Scandinavian heritage are more likely, people of African or Asian heritage less likely but even there it isn't impossible. There may be an environmental factor - there are often clusters both geographically and time-related. And families tend to be exposed to similar conditions.

The symptoms of fibro and PMR can be very easily confused - and both can affect legs. If the patient has raised inflammatory markers it is proof it is not fibro - it is not an inflammatory disorder. The response to pred is also key: PMR responds to pred, fibro does not. Ever.

I think your doctor's comment showed a degree of ignorance - they are two totally different things and different management is appropriate. Maybe the rheumy had "misspoken" but got it right in the letter.

Thinking is now centreing on PMR and GCA actually being the same thing - just at different points on a spectrum of symptoms ranging from "just" PMR predominantly affecting arms/legs to a GCA that "only" causes head and neck symptoms via a large vessel vasculitis (inflamed blood vessels) that can include the PMR and GCA symptoms as well as a few more. So yes, you may have only PMR symptoms, only GCA symptoms or a mix of both in the middle. About half of patients with GCA show symptoms of PMR - they are probably the ones in the middle.

This paper

academic.oup.com/rheumatolo...

has a nice figure which shows it clearly without needing to understand much of the medical-speak.

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When we are talking about stress being a factor - I did not have any problems until I felt a lot of stress, maybe to extreme, in my marriage towards the end of 2012. Me and my wife split up in the September of 2012, then the Polymyalgia arrived in December 2012. I had a particularly bad year in 2015, with my divorce coming through in the February of 2015, then my mum was ill, which caused a lot of strain within the family, and passed away in November 2015. As if that was not enough, in December 2015 my house was affected by the Boxing Day floods - maybe that was the last straw to break the camel's back. My daughter said that even though I was maybe not outwardly too stressed, underneath this was doing a lot of damage to my health. My job at a Call Centre was also stressful, as they were always pushing for faster turn-round times on the calls, so all of this combined was doing me no good. My house was also on the market and had been for several months. Ironically enough, I phoned the Estate Agents to take it off the market when I lost the sight in my left eye, then the very next day I got a viewing. I could not then make up my mind on whether to sell it or not. In the end I went ahead with the viewing and my house was sold and I moved out on 18 December, so at the same time as dealing with my GCA I was also dealing with my house move. At the moment I am living with my ex wife, but am in limbo with not knowing my sight position at this time to be able to make a decision on where to live, what type of house to look for, and if I am going to be able to carry on with my job, so everything is up in the air.

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I think that all qualifies for a stress label!!!!

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Yes, I agree - a lot of stress!

Reading the reports you sent me, the "2" in red of symptoms of GCA not related to the head basically, in the diagram (Extra Cranial GCA) - I was, and am still, getting out of breath quickly, like when I do a short run or walk up a steep hill, and never used to do - this factor was never mentioned by the eye doctors or Rheumatologist as a GCA symptom - does this mean that I WAS in fact having a GCA symptom without realising it?

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Possibly. I had a very strange flare a couple of years ago - very different from any PMR before, I just got terribly breathless trying to walk up any small slope. I was thoroughly checked at the hospital and since 15mg sorted it it was assumed in the end it was a flare affecting chest arteries. And recently another expert agreed that I almost certainly had the version that fits in the green circle in the middle but it was never identified - took 5 years to get a PMR decision! Of course, now it is too late to find out. But at least it wasn't cranial and ignored.

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I am still like that now though. I started on 60 mgs of Prednisolone a day, dropped to 40, then 30 and now on 20 mgs a day from 30 Dec. The Rheumatologist's plan is for 17.5 mgs a day from 20 Jan, then 15 from 10 Feb.

From what you were saying, if my right eye is still okay now, after nearly 3 months from 13 October 2017 when I started on the steroids, and the last scan I had about 4 weeks ago showed no sign of it being affected, do you think it will be okay, or may still be affected in the future?

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I don't know. But I think I would be asking for a second opinion - that is a VERY fast reduction for GCA. Your sight is only too precious - I would prefer to take a bit more pred than risk the other eye.

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My schedule was 60 mgs for 7 weeks, as it was brought down to 40 for a few days then put back up again, then 40 mgs for 4 weeks, 30 mgs for 2 weeks, now 20 mgs for 3 weeks, then from 20 Jan 17.5 mgs for 3 weeks, then 15 mgs for 3 weeks - not known after that.

The schedule is from a Rheumatologist at the hospital who is a Senior Lecturer, probably about late 30's to 40 years old.

Who could I really ask a second opinion from though?

I suppose the problem is that there are so few of these GCA cases to have a guide for a steroid dosage plan. He said the plan would be for about a year, then an alternative to Prednisolone would be looked at for the following year.

What was your dosage plan? Did you suffer any sight loss?

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I only have a diagnosis of PMR - never had vision problems.

Maybe I'm confused about your starting date - I understood mid October 2017 so 60 to 20mg by now seems fast. If you have no return of problems you are probably OK - but does the breathlessness pre-date pred? Pred can cause breathlessness itself.

There are no alternatives to pred in GCA so I don't know what he means there.

Where are you?

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When I was diagnosed with PMR I started on 15mgs a day, then gradually reduced over 15 months before coming off Pred.

The breathlessness does pre-date Pred, and as I said in one of my earlier messages, it might have been the red (Middle image) in the GCA diagram.

I go to the hospital again for review on 15 Jan, so will bring this up then.

I live in Leeds.

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Do you see someone in Prof Sarah Mackie's group? If it were me I'd like to be seen by her or Prof Ann Morgan for an opinion. They both think outside the box.

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I only joined the site yesterday, so do not know many people yet. Which group are they in? Do you have any contact details for them?

Thank you for all your messages to me by the way - it is much appreciated!.

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In other words - which hospital consultant are you under? At which hospital?

medhealth.leeds.ac.uk/profi...

medhealth.leeds.ac.uk/profi...

They both also do clinical work - it says on the website that Prof Mackie is working at Chapel Allerton but I believe that has changed realtively recently. However - they can be contacted via the details on these pages.

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They are both connected with the same hospital I am under - St. James's in Leeds. But should I contact them when I am under another Rheumatologist - it would be like going behind his back?

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It is a bit - which was why I wondered if they were on the same team. But given your chest problems I would ask the rheumy you see if he would mind if you could be seen by Prof Ann Morgan - who is a specialist in vasculitis. He will probably claim so is he - but she really is.

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I have an appointment to see my GP next Tuesday morning. He is the same one who dealt with my PMR diagnosis. I am going to ask for an emergency referral to see either Professor Mackie (I believe she sees patients at Otley hospital from what I have been told by an organiser of the local PMRGCA group) or Professor Morgan. I agree it's best to see someone who is an expert on GCA because of my sight loss in my left eye, as I need to have no regrets that I have tried my best to ensure that the sight in my right eye will be okay.

I really appreciate the advice you have given me, and the advice you give to other people, will also be much appreciated by them.

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It could have happened to me. Vision was doing strange things. Fortunately I had all the symptoms of GCA, was put on prednisone immediately and referred to a diagnostic unit at the hospital. It is unusual both eyes were affected. So tragic for your father.

Even in New Zealand - where I live - there are only 12 per 100,000 cases of GCA recorded annually.

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"It is unusual both eyes were affected." - afraid not. If vision goes in one eye the likelihood that it will go in the other is quite high, I think about a 50/50 chance. Up to 20% of GCA patients have permanent unilateral visual loss and another 12% or so lose all vision - they tend to be older and have fewer symptoms beforehand so the diagnosis is made late.

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How long after vision loss has occurred in one eye would vision loss occur in the other eye, if someone was put on steroids, just at the point of vision loss occurring in the one eye? If vision in the other eye, apart from a small amount of blurred vision caused by swelling due to the high dose of steroids, was still okay after 3 months, would you expect vision loss in the good eye still to occur? and if so, over what period of time?

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I think they work on a couple of weeks being typical - that was the timescale DorsetLady was told after losing sight in one eye. So after 3 months you should be safe - provided the GCA doesn't flare when you reduce the dose.

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I have the number of the Rheumatologist's secretary - I will call her on Monday morning and say that I am having respiratory problems. The Rheumatologist is called Dr Barr (male). It might be a bit awkward asking to see Professor Morgan. It would probably be easier if I could contact her by email so he would not be aware, and just ask her about the Prednisolone reduction schedule, and the fact that these are being made without further blood test results. I thought 2 months without a review or further blood tests, in view of me having had no GCA symptoms, was a bit long, and should have been after another 1 month not 2, like the time of the first review after seeing him for the first time.

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Could this happen during any flare?

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I really don't know. Theoretically yes - but you will be on at least some pred which should help.

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Thanks, Eileen. I have another appointment to see the rheumatologist in a couple of months (when I am down to zero pred), so at that time will dicuss how to recognise flares, if they erupt, and how to cope then.

Blood tests will continue till way into next year. Feel well looked after.

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Hello.

I was wondering what type of "strange things" your vision was doing, and how long it was before you were put on Prednisolone after noticing problems with your vision. How long have you been on Prednisolone for, and what is your current dose. I went from having 20/20 vision in my left eye to losing my central vision in it in just 2 days.

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Visual auras, bright flashes, colourful splashes, half-eye dark, the other half lacking colour. Slow comeback to normal. Lasting about a minute. At the time I was fascinated by the experience, not realising the seriousness of what was happening.

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My own experience was exactly the same as yours - fascination with what was going on in my eye, and not really realising just how important it was to act straight away. It was almost like I was in a dream world, and I did not feel fully in control. What really gets me is that a scan at the opticians on the Wednesday afternoon just showed a very faint cloud in a very small area, yet by the Friday night I had major optic nerve inflammation, and the steroids were then too late - taken for the first time on the Friday night (60 mgs) - the eye doctor told me the steroids were to help protect my other eye.

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Moronically, I didn't want them to stop! I was never a 'sick' person, didn't need a doctor for more than 20 years, but when the eyes did funny tricks, went immediately to the doctor. Texted my family and when I arrived at the medical centre, they were all there - ashen faces! Had to be something bad for mother to see a doc. They lived with my mantra that medics were there to dispense drugs and kill people. Ha ha.

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Don't know where I read it, but obviously, it was not right.

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I'm late on this, but wanted to share my own experience. I haven't posted in a while, but have been following along with this excellent group of valuable advisers. First, tjoffrion, I'm very sorry to hear what's happened to your father. I do hope you reply with more specifics, i.e. his age and overall health, whether he's retired or still working; as I do believe when vision loss/Prednisone happens in our life, where in life we are and what normally occupies our time, can have an influence on how we manage through this challenging time. We can try and provide help/support.

As PMRpro has already mentioned, they call it Occult GCA. We are a group of GCAers who experience vision loss as our first clue that something is wrong. For me it happened in April of 2015. I was 57, single, and still working, and I live in Nova Scotia, Canada. I woke up with the vision gone in my left eye, and considerable loss in my right. It's been quite the "ride" since then.

As with any loss or conflict in life, there are phases that we go through. And similar to how we each have our own version of the side effects of Prednisone, that's also true of the realities of vision loss. So, your father will have his own experience, as did I. I can only offer some things I've learned in mine, in the hopes that he and you can benefit from them.

You are emotional now, that's the first phase. We go through mourning. And that phase doesn't magically abruptly end for the person with vision loss. There are still moments when frustration can have me mourn my loss. But they are getting fewer as time goes on, as I decided from the get go that I will have the best life I can muster! And a part of why it's getting easier is I'm starting to forget how it "was", and have more patience with how I've had to change.

Looking back, it's funny (peculiar not ha ha) what gave me motivation along the way. Two months into it I met up with a registered nurse who knew of my circumstances, and her first comment was "You're life is ruined!". Then six months into it, at my first consult with a CNIB Consultant (I think they call it the AFB in the U.S.) she suggested I was struggling because of my age. According to her, if I was younger, I would have adjusted already. Both comments just made me stronger, and determined that their ignorance would not derail me!

As has already been mentioned, I hope contact has been made with the AFB, or whatever organization in the U.S. provides services and support for those with vision loss. Although my above example may not suggest it, they do provide a critical and welcome service. The first I took advantage of was a weekly conference call, hosted by a CNIB facilitator who was completely blind, with from 6 to 10 other participants of all ages and various degrees of vision loss for a variety of reasons. The first session was so good to keep me focused on constructive progress, that I took part in a second session. They also have similar sessions for family members who must support a loved one who has lost vision. These would help you better understand some of the issues your Dad may have. I also had their cane training, and can highly recommend any of these services.

I lost my drivers license due to my vision loss, and in turn my job because being able to drive was a prerequisite. Learning I did not have enough vision to drive was a major bump. I got the call on June 2nd, 2015. When I hung up the phone I messaged my sister to let her know the outcome. She got very emotional and offered to call me. I told her no, as I knew I had to remain strong at that point, or I would start down an emotional slope that I was afraid of. I mention this because the best support you can give your Dad is to try and remain strong yourself. Strong, positive encouragement can go a long way. Easy to say, I know.

This is getting too long, and I'm not convinced of it's value. Yes, vision loss does change your life. I count myself lucky. I still have central vision in my right eye. I have constant sensitivity to light, but my central vision allows me to read and enjoy my passions, like family history research, and photography, believe it or not. I can still do many things I once did, I just have to do them different now. And I'm happy to say that I am down to 5.5 mgs of Prednisone, and feel so much better because of that! Knock on wood, I hope my reduction continues smoothly, and look forward to 2018!

But I must mention one last thing, the most important point for those of us with Occult GCA. It's very important for any of us with GCA to be on the sufficient amount of Prednisone to suppress the inflammation that (for those with Occult GCA) initially caused the damage to our optic nerves. You'll learn that two markers in our blood (CRP and ESR) can give indication that there is inflammation. These are generic markers, that only indicate there's inflammation somewhere in our body, caused by "something", like a cold, not necessarily GCA. Because we with Occult GCA have no other means of knowing if we are on sufficient Prednisone (i.e. no symptoms like a returning headache, or jaw pain), we are at risk of loosing further vision. It's important that we are aware of our blood results before we continue to reduce our Prednisone, and we also must reduce very slowly, so to minimize the risk of a "flare" or a return of the inflammation.

Unfortunately, it has been my experience (and repeatedly mentioned by others in their posts too), that those who manage our Prednisone reduction (typically our Family Doctors or Rheumatologists) put more priority on getting us off Prednisone, because they've been trained on the long term side effects of Prednisone use. So they set up objectives to be off Prednisone in a year or two, and have people reduce too quickly and by a too large dosage each time. When their approach puts all of us with Occult GCA at a real risk of further vision loss, we must become our own self advocate to prevent this.

PMRpro mentioned Dr. Hayreh in the U.S. He's now in his 90's, but still practices part time at the University of Iowa, and is considered an authority on GCA. I was fortunate to have a consult with him a year ago October. Reading his published research on GCA will help you better understand the condition, and his approach to treatment. It's information overload at first, but step by step, it does get easier.

I hope your Dad all the best!

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I have just read your post with great interest, as my GCA gave me no warning signs. and I have had sight loss in my left eye. I started on 60 mgs of Prednisolone for 6 weeks from 13 October2017, which actually came down to 40 for just 2 days before going back up again in that time. I then reduced to 40 mgs for 4 weeks from 1 December 2017, then 30 mgs for 2 weeks from 16 December, and now 20 mgs from 30 December, which will reduce to 17.5 mgs from 20 January 2018.

PMRpro has already said to me that that is far to quickly, and what you have said in your post further backs that up. After a review by the Rheumatologist at the hospital in mid December he said he would see me in 2 months (mid Feb) , so in that time I will have reduced my Prednisolone dose 3 times from 40-30-20-17.5 mgs, without the results of any further blood tests in that time. This is now worrying me, as I do not want to lose any sight in my right eye. As the post says - I will not get any warnings like headaches or jaw pain if the dose is not sufficient - but what would you suggest I do about this? Who should I speak to? (the Rheumatologist or someone else?)

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