Sorry for the length of this but I have joined this community on behalf of my mum who was diagnosed with temporal arteritis in January. For some time she had been complaining of a feeling of pressure in her head and lethargy but didn't feel her GP would be able to do anything, it wasn't until she started to complain of pain down the side of her face that she agreed to visit the surgery. We saw a locum GP who said she had an ear infection and gave her a course of antibiotics but they didn't help so we returned on New Year's Eve and this time saw a regular GP he confirmed the infection had cleared up and he suggested a blood test for a condition that causes inflammation in the veins, an appointment was made for 2 days time but unfortunately the next day mum had a bad fall hitting her head badly on a wall and she needed to go to hospital to have it stitched.
A week later mum complained of blurred vision so the next day I took her to eye casualty thinking it might be a bleed from the fall, they did lots of tests including a CT scan which was clear but they said abnormalities had shown up in her blood and wanted to start high dose 60mg of steroids immediately and she would need to come back for a biopsy which confirmed the condition.
Mum has since had both eyes lasered but her vision has not returned she says one eye feels like it has a film across it and the other is foggy she can see shapes and colours but not detail an optician says specs will not help, mum lives alone but we are having to stay with her most of the time as there is very little she can do for herself, her mobility is bad due to her age and arthritis in her knees.
The GP is reducing the steroids we are down to 30mg but they are having adverse side effects mum is extremely anxious, depressed and has been having severe mental disturbances consequently she has been put on diazapam to calm her.
The hospital consultant seemed confused as to why she had lost vision in both eyes and said she would get some sight back after the laser treatment (mum previously had cataracts removed from both eyes we knew that one had since clouded over) but she didn't and we are not due to see him again for another month, apart from the optician no-one has told us if her sight loss is permanent because if it is clearly she cannot stay on her own and will have to come to live with me, I have read that vision loss can be permanent but usually in just one eye but also that vision has returned for some after a couple of months.
Any support or advice anyone can offer will be helpful, it is so sad as everything has been taken away from mum she can't see the TV, she can't read, she can't knit all she has now is the radio.
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4sibbs
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I'm very sorry to hear of your mother's problems - and, of course, by extension yours.
"The hospital consultant seemed confused as to why she had lost vision in both eyes and said she would get some sight back after the laser treatment"
IF - and it is IF - the sight loss is due to GCA (temporal arteritis) I'm afraid there is nothing that will improve it. The cause of visual loss in GCA is that the blood supply to the optic nerve was stopped and it was damaged because of lack of oxygen supply, the nerve cells die in much the same way any other cells die when their oxygen supply is stopped but nerve cells rarely recover - if the GCA is recognised in time and high dose steroids given then usually it restores the blood supply and further loss is avoided. However - once permanent damage is done, that is it.
"I have read that vision loss can be permanent but usually in just one eye but also that vision has returned for some after a couple of months"
If the vision has been lost in one eye, it is very common for the other eye to also be affected within a short time although they are not entirely sure why (I've never seen any reason given in the reading I have done). That is the reason that it is so crucial that GCA is recognised in a timely manner and treated and this is something that the National charity is working on to improve - but the mills of God, the DoH and the NHS grind slow!
This is an outline about the visual problems from Medscape:
"Visual symptoms are present in about 33% of patients; 40-50% are transient (amaurosis fugax and diplopia) and 50-60% are permanent. Regarded as one of the more serious complications of GCA is the onset of blindness from involvement of the ophthalmic artery. Permanent visual loss may be partial or complete and may occur without warning; about 50% are unilateral and 50% are bilateral. Varied visual symptoms including blurring of vision, diplopia, and loss of vision occur in 36-60% of patients."
Since the visual loss in GCA is due to damage to the optic nerve I must say I am a loss to know why the consultant thought lasering would achieve a return of vision. He must have thought there was another problem as well - or maybe he saw no indication of damage to the optic nerve. Did the optician say anything other than that glasses will not help? Did he examine the back of her eye?
I am so sorry to have to tell you such devastating facts - but they are the reality I'm afraid. Other than the visual loss and the steroid side effects is your mother reasonably well? Because that is a very fast reduction in the steroid dose for GCA. Is she also under a rheumatologist - paradoxically they are usually the specialists for GCA. Where do you live?
It is a lot to get your head around - and even without the steroid effects which are probably not uncommon in the very elderly, the realisation that normal life isn't going to happen soon, if at all, must be most distressing for your mother and I'm not surprised she is depressed. Do you still have a local library? They may have audio books for the visually impaired - I would hate to be restricted to listening to the radio!
Sorry to hear about your mother's problems. I fully appreciate what she must be going through. Having lost the sight in one eye through undiagnosed GCA 2 years ago I can confirm what PMRPro says, once the sight is gone it does not come back. Sorry to be brutal!
I am at a loss also to comprehend why laser treatment was performed. Her symptoms regarding the pains in her head and face, and the blurred sight is exactly what I suffered and typical of GCA, although, as many of us know to our costs, many in the medical profession don't seem to recognise them as being GCA.
I can understand the quick reduction in steroids. The initial large amount is usually given to preserve the health of the remaining good eye when only one has been damaged, it reduces the inflammation quickly, but can cause other side effects. Unfortunately as your mother had already lost the sight in both eyes then the doctors didn't/don't see the need to keep steroids at very high levels.
Mine was 80mg for two weeks, then reduced to 60mg for two months, then reduction in 10 mg stages until 30mg reached four months later.
You might find that the RNIB web site gives you more information and also your local council should be able to give you advice on practical help. Also your local GP surgery should be able offer assistance.
Good luck to all of you, through a very difficult time. Please keep in touch, there is a wealth of knowledge on this site, I know how much they have helped me. DorsetLady
Thank you for your responses, information and support which is very helpful, in answer to your questions mum was diagnosed with Polymyalgia Rhematica in 2007, she was on a low dose steroid for about 3months but was taken off because they made her feel strange her symptoms didn't return so no further treatment was necessary. A year ago she was diagnosed with Paroxysmal Atrial Fibrilation and given bisoprolol but she refused to take warfarin as she was afraid she would get nose bleeds as she'd had problems with taking aspirin, then in January this year she was givin Ramipril for raised blood pressure.
We knew mum needed laser surgery for her left eye due to capsular thickening following cataract operations, the consultant decided to laser both eyes at her follow up appointment about 3weeks after the diagnosis of GCA was confirmed, he did tell us that laser surgery might improve her sight but he couldn't promise and if not there was nothing more that could be done, we are due to see him again on 9 April.
The optician did look at the back of her eyes and said he could see some nerve damage and there was little chance of recovery, if any, very much as you have explained. He recommended we ask the hospital to register her as blind as she would get additional benefits and support.
The hospital recommended a referral to rheumatology but her GP said it was not necessary as they would monitor her medication.
We live in Northampton there is a library but mum has never really had much interest in reading books, she can't hear very well and so far has dismissed any suggestions of a hearing aid!!!
Once again thank you for taking the time to respond
Sorry to hear about your mother. Your story is so similar to my mother. Her symptoms deteriorated over many months and as it turned out was missed by several different members of the medical team. I finally diagnosed her condition after pulling together information. Fortunately her GP was willing to listen to me, followed her up / assessed her immediately and started her on 80mg of Prednisolone. She was immediately referred to a consultant rheumatologist who managed 'shared care' with her GP. Her prednisolone was reduced very gradually over two years and she is now taking 3.5mg daily. There were a couple of times when her reducing dose was increased because of her symptoms. She was very fortunate that she did not lose her sight but the ophthalmologist said if she hadn't been treated when she was she would have lost her sight. I am really sorry if your mother has permanently lost some of her vision. From our experience I would certainly recommend that a consultant rheumatologist oversees your mothers care at least until she is stable and managing to reduce her dose without any adverse effects.
hi.I am visually impaired through GCA,I was able to join an organisation run by a charity for people unable to read a book properly for medical reasons.The patron is Stephen Fry. I expect you know about this organisation but thought I would point it out again.You can join for £20 a year and have access to over 6000 audio books which you can download or stream online or have the loan of a machine and borrow books by post.I find it invaluable,especially on days when the transient blurring on top of my permanent visual impairment and also pain from GCA and my PMR mean I have to rest, The website address is listening-books.org.uk.I do hope this is of help and apologise if it has already been mentioned.
So sorry to hear about your Mum and all the problems.
The steroid side effects of anxiety, mood swings etc aren't unusual, they are mentioned in the medical list included in the medication package.. But as it is the only treatment available then most of us take the medication to try to treat the symptoms.
The positive thing is that the mental disturbances will pass when the dose is reduced/ ceased, hopefully the diazapam can be gently tapered too.
Thank you, my mum is a lot calmer on the diazapam but she is now also on an antidressant because she is finding it very hard to understand and accept this condition, especially as her sight problems literally came on overnight. If only we had known about GCA we would have been alerted to the symptoms and would have taken her to a GP much sooner, but if GP's don't always recognise the symptoms it is possible it could have been missed anyway. Considering how serious this is I f untreated, raising awareness should be paramount within the health sector.
I lost use of one eye over night from GCR once temporal artery is damaged no return ,i could not believe how quick it happened ,so life now on Predisolone 5mg daily to protect good eye ,and MTX weeky ,hope side affects in time will settle down and body will a just good luck
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