My wife has been blind now for about 6 months having been diagnosed with GCA. She lost her sight suddenly in a day. She was admitted to hospital and given large doses of steroids and when she was discharged after 10 days put on a reducing steroid regime, she is now on 12.5mg. We have had one meeting with the rheumatology consultant about 4 months ago who set out the reduction program. Before she went blind she had been unwell for several months spending most of her time asleep or in tears also not eating and I blame my self for not making her go to the doctors at the time but she was having treatment for anaemia and we put it down to that. What nobody has explained to us is what has caused her GCA and what the future holds for us. We have seem our GP but he was not much help as we are registered at a health centre with about a dozen doctors and you can never see the same doctor unless you can book appointments a month or more in advance so there is no continuity of treatment.
Sorry to waffle on but wanted to give a full picture. Joyce is very despondent with the situation not knowing what caused her blindness and want may happen in the future. So can anyone offer any advice or been through this before.
Thanks Barry
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mac66
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First, I am so sorry to hear about your wife's situation. I can only imagine how difficult it is for her - and for you as her carer.
I'm not a medic and a only a 'mere' PMR sufferer, so I won't try to explain what causes GCA. Only to say that this forum is a massively helpful source of advice and support from others who know both how the condition arises, and also how to cope with the major life changes it brings. There are quite a few members of the forum who've been / are on the same journey with sight loss from GCA, I'm sure they will respond to you before long.
Sadly, it seems that, in some cases, GCA symptoms are diagnosed either too late or even not spotted by over-stretched GP's who have very varying levels of expertise around this illness, and it does seem to be a 'Cinderella' health condition which doesn't get enough publicity or recognition in the wider health community. That said, there are some really dedicated people out there who are campaigning for greater awareness of PMR / GCA - and you may well have a local support group who can rally round. It's worth checking this out on the PMRGCA website - and also the RNIB perhaps?
As for blaming yourself, you really have no need to. So often, PMR/GCA sufferers (and their nearest and dearest) just don't have access to the necessary information about these conditions nor a medic who is on-the-ball enough to take speedy action (especially with the far more serious GCA).
I think the priority for you both now is to tap-into as much advice and emotional / practical support as you can: and for you, especially, to keep a steady head and think about the practicalities of life for you as a couple, albeit 'one wing down'.
With heartfelt thoughts to you both in the meantime.
Barry, words can't describe how devastated I feel for both your wife and for you after reading your post. I have had GCA and it's linked condition, PMR, and never a day goes by when I don't think how blessed I was to be diagnosed and treated in time to prevent loss of my eyesight. I recently met the distraught daughter of a lady who had lost her sight in similar circumstances - a tragedy for the victim but also for their loved ones. But please do not blame yourself; in fact praise is due to you for the support you are giving your wife, and for having taken the trouble to search out this site, and no doubt you will have been in touch with other helpful organisations such as the Royal National Institute for the Blind for their guidance and support in this also.
Without prompt diagnosis and treatment, GCA (Giant Cell Arteritis) can cause loss of sight if the inflammation affects the temporal artery leading to the optic nerve, ie if giant cells form they can block the artery cutting off the blood supply to the optic nerve. Included in the symptoms can be head pain, jaw pain on chewing, visual disturbance, nausea/vomiting, night sweats, weight loss, high blood test markers of inflammation, but unfortunately it is very occasionally possible for loss of vision to occur even without headache. As for an answer to your query about a cause, unfortunately there is no known cause at this time.
Have you purchased Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide? There is a section there on the latest research into GCA. The book is available either from Amazon or direct from PMRGCAuk pmrgcauk.com. You will also find a list of local support groups on the Charity's website.
Also take a look at youtube for Professor of Rheumatology, Bhaskar Dasgupta's talk at the Charity's latest AGM about "A landmark year for PMR and GCA".
I so wish that I could help further but I do hope that at least you may find some of the above a little helpful.
Please keep in touch if it helps and never apologise for "waffling" - if we can't do that on this site then we certainly can't do it anywhere else.
So sorry to hear about Joyce. As Mark said, don't blame yourself for not realising something was going on - I was in exactly same position, unwell for a long time, until over a few days I lost sight in right eye. Fortunately, a visit to A&E in time saved the other, but I could easily have been it the same situation as your wife. Lots of GPs aren't very good at spotting the symptoms, or confusing them with other illnesses especially if there are other health issues.
From a layman's view simple explanation is that GCA (or PMR) is name given to condition when the immune systems stops working correctly and certain cells that make up your blood vessel grow out of control (hence Giant Cell Arteritis). GCA normally affects major arteries I.e Aorta, and particularly those around the head. PMR affects the main muscle blocks -hips/shoulders. This means that the blood doesn't flow properly leading to fatigue, muscle pains, and generally being unwell. In GCA cases once it gets to the smaller temple artery it stops the flow of blood to the optic nerve, which causes blindness.
The only way to control the inflammation caused is to take Pred until such time as the condition goes into remission of its own accord - nobody seems to know how long, some say 2 years, but usually longer nearer 4 or 5 years.
As for the way forward, if you look at the main PMRGCAuk web page you can get info on local support groups etc, plus as Mark says contact RNIB if you haven't already.
Joyce's main problems now will be physically dealing with the blindness, so get as much help as you can from RNIB or local council, and try to reduce the Pred, which in itself can be very difficult.
Please come back to this forum anytime, there will always be someone to answer your questions and give support. Life will be difficult for you, so if you want to let off steam - we're here for that as well!
I can only add to the expressions from the others - I am SO sorry this has happened to you but it is something that happens to as many as 1 in 5 patients with GCA: it is called occult GCA and there are no real systemic symptoms in advance of the blindness. Even if you had taken her to the GP it is very likely they may not have recognised it as there does seem to be a very fixed image, even amongst rheumatologists, that GCA presents with severe headache, jaw pain when eating and scalp pain. In fact, each of these is the presenting symptom in fewer than 20% of patients and even overall occur in less than half of patients. The blood tests that usually indicate inflammation are characteristically much lower, even normal, so a GP response is likely to be "the bloods are normal, it can't be anything..." which was what I was told for 5 years - but I only had PMR.
This article may help a bit - I don't know what standard of science/medical background you have but much of it is in fairly simple English. But it really only tells you what you didn't experience and mentions occult GCA.
The underlying cause isn't entirely clear. It is most likely an autoimmune disorder: something disturbs the immune system so that it stops recognising the body as "self" and attacks it, in the same way that it would normally attack viruses or bacteria in an infection. This results in damage to tissues which causes inflammation and giant cells develop - giving it its name. They can appear in the walls of any artery with an elastic component to its wall. It can be found in the chest, affecting the aorta and other large arteries, and can also affect smaller arteries in the head - in your wife's case that was the blood supply to the optic nerve.
If the walls of the arteries become so swollen that their diameter is reduced too much, any small blood clots in the circulation may get stuck, even red blood cells may be enough, and stop the blood flow to the tissue on the other side - just like a stroke or heart attack. In the paper I've given you the link for they talk about amaurosis fugax - fleeting loss of vision - which may happen in advance if the stoppage of blood flow is short-lived: just like in angina or a TIA (mini-stroke). This is a warning that something is wrong but can be so fleeting the patient doesn't notice or it may happen at night. Eventually, the blockage is so bad the blood flow is stopped for long enough for the optic nerve to be damaged because of lack of oxygen supply. Unfortunately severe nerve damage is generally irreversible - as you will know from spinal injury stories. Then blindness is the result.
If the patient has symptoms and if they are recognised, then a massive dose of prednisolone may avoid the final blockage by reducing the swelling rapidly. However horrible high dose pred and its side effects may be - they are better than being blind. However, even with treatment, if one eye has already gone, the second usually goes within a week or two. So, even had it been realised earlier that something was wrong it might already have been too late. But we will never know.
In the aftermath - has your wife any symptoms now? I realise it is probably very difficult to sort out feeling "fluey" ( a typical description in GCA) from the rest of the awfulness - but the one thing that does concern me a bit is that the rheumy seems to have left you in a bit of limbo: the feared catastrophic event has happened so the pred is no longer needed so she is to reduce to zero. Yes, she is blind, there is nothing to be done there with pred, but the GCA COULD be affecting other arteries and there are risks there too. Was that investigated with PET/CT or PET/MRI? If that is the case - she may need pred for longer and there aren't always dramatic symptoms. But that is a minor point really.
In the longer term, in the context of the GCA I personally think your wife might need a bit more investigation to be sure there is no on-going damage being done to other arteries. One thing recommended for post-GCA patients is that they should be monitored every 2 years for aortic aneurysm as the GCA CAN (not necessarily though) cause damage to the artery walls. This can partly be done in the UK through the national screening programme for abdominal aortic aneurysm
which as you will see is mainly for men but women at risk can be added by request. Thoracic aortic aneurysm is more difficult - one option is chest x-ray but specialist cardiothoracic ultrasound should be better. Other forms of cardiovascular disease are also more common in post-GCA patients including peripheral vascular disease should always be borne in mind.
Otherwise, your focus now must be in your wife coming to terms with and coping despite the blindness. I assume you have been in contact with the RNIB who can offer suggestions for her learning to cope without vision. A family member went blind because of glaucoma (though I have no idea if he had any residual vision). He continued to live alone for some considerable time - with a talking microwave and other aids. There are "talking" books as I'm sure you know - and there are also newspapers etc which are done for the visually impaired. At one time, these charities were also searching for volunteers to record for issues to be sent out.
There are myriad things to help independence but I have no idea what you have already investigated. It is far harder of course at our age - but even then, there are answers to many things. But your first stop should be RNIB I think.
But do feel you can come back here for a whinge/scream/sympathetic ear. We will always listen even though there is a limit now to how we can help.
We saw the reumy back in May and he wants to see her again in 6months. When we do we will bring up the possibilities of other effects and ask about getting checked for abdominal aortic aneurysm. Also possibility of CT & MRI scans. I will get on to the reumy's secretary next week to chase up the appointments as we have found we need to be a bit proactive to not fall through the cracks.
We have had a lot of help from the local association for the blind and are on the waiting list for emotional counselling with the RNIB which I hope will help us both.
I expect or hope things will get easier with time but this wasn't the way we thought our retirement would go.
I can't add much more than what has already been stated by these very knowledgeable people. I too have Occult GCA, as was explained by PMRpro. I too lost considerable vision in 24 hours, with no other symptoms of GCA. It's been 16 months since this happened to me. But I was lucky, I still have enough vision in one eye to read, and walk without a cane, albeit the latter probably more out of stubbornness than wisdom.
I can share what has helped me in that time, although we are all different. When I "look" back at the first year, it took far longer than I would have expected for me to understand the implications of my vision loss. It was a very overwhelming time. The high level of Pred which I was on, and am still on, probably accounts for some of that. But I do know there were many emotional phases, such as the shock, the fear, the frustrations and the denials. And these will apply to you both, and are normal.
I realized for me I had to work my way to acceptance, and that just takes time, and doesn't happen all it once. The advice I would have given myself is just do what you need to now, be patient, one thing at a time, to get through the first months, and don't apologize to anyone for that. It will get easier. Try to focus on those things that give you strength, both mental and physical.
I highly recommend the services of whatever organization helps those in your area with vision loss. Here in Canada it's the CNIB, in the U.K. the RNIB. They helped me on my path to coming to terms with my vision loss, and taught me skills to live independently. Among other services, I participated in a number of workshops via conference calls, where the participants varied in what vision they had. Those with complete vision loss gave me the most strength and inspiration, as they shared how we can have a productive life again. They also have programs to help people like you, who is helping someone with vision loss, as it's such an adjustment for both.
As for the cause of GCA, as has been mentioned, the cause is not yet known. It is a condition that more and more is being learned about, but still much more to learn. I have done a lot of research, because of my Occult GCA. But because many Doctors have limited experience with GCA, many of us have to become self-advocates. Again, take your time to learn, as it is very overwhelming at first.
I can say the future gets easier. But I don't want to sugar-coat it. It will take time. Our lives have taken an unexpected curve, and it means we need to make changes we never anticipated. Accepting that was/is my biggest hurtle, but since I have on so many fronts, my life is far less stressful and far more enjoyable again.
As far as what may happen in the future, I deal with that by trying to make choices that add quality to my life, as it applies to learning to live with vision loss. It all boils down to my choices. So I choose to try and stay mentally strong and positive. It's helped me get rid of a lot of nonsense clutter in my life that no longer is important, and puts a focus on the many blessings that I have. Just a shift on how I look at things now, which is a good thing.
And what may happen in the future with Joyce's GCA? Having a medical team that is knowledgeable is important. For me, in my area, that's an ongoing challenge. I see my GP every three months. She readily admits she has limited knowledge of GCA, but her roll is to do the tests to make sure I don't develop any side effects of long tern Prednisone use. As I leave one appointment I book the next, and that works well.
I now see my Ophthalmologist every 6 months. He checks to make sure there are no new issues with my vision. I also see an Internal Medicine specialist every three months, and it is he who is managing my reduction off Prednisone. I have my first appointment with a Rheumatologist soon. Not sure if she'll want to see me again, but I'll be asking the question. I find it easier to always book the next appt as I leave.
You did the right thing, by posting and sharing your experience. We don't call it waffling here. We've all been through our rough patches, and need to vent or ask for guidance at times. No shame in that.
Please let Joyce know she is not alone. Beyond myself, there are others on this forum who have also had varying degrees of vision loss due to GCA. Be strong, it will get easier in time. And you are both lucky to have each other!
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