Further decline with severe sight impairment

[Perry1]

Hi all, I have joined this forum as my mother lost her sight due to GCA 2 years ago. She gets frustrated with nobody able to provide answers to her questions - in particular is it normal for eyesight to further deteriorate even when GCA is "under control"? Would be really interested to hear thoughts from people. Many thanks.

[HeronNS]

I'm sorry to hear your mother has been having problems. I know that others with more information will be along. I do wonder whether your mother has been checked for glaucoma or cataracts as these can be side effects of pred treatment. As far as I know a high enough dose of pred as soon as possible when GCA symptoms occur should prevent further damage from that situation, but the subsequent taper to a lower dose after the inflammation is under control must be done carefully to prevent any flare up.

[Perry1 in reply to HeronNS]

Thanks for your reply HeronNS - she had glaucoma before the GCA but it was well under control, and also cataracts removed from both eyes. Her right eye has no sight and her left eye was 1.4 when she left hospital. Very low I know but can only see outlines now. She had Yag laser treatment on her left eye this year - seemed to improve clarity a bit in close vision but further decline now being experienced. She has monthly blood tests and told her results (CPR etc) are normal and she is almost off steroids now.

[SheffieldJane]

Have you been in touch with the RNIB? They should be able to provide on- going advice. When the U.K. wakes up, I am sure that DorsetLady will offer advice based on her personal experience and in depth knowledge of GCA and its effects.

[DorsetLady PMRGCAuk volunteer]

Hi Perry1,

Sorry to hear about your mother’s sight loss. Can you clarify what exactly - one eye completely or reduced in one or both eyes.

Once she started on the correct amount of Pred and continues on an appropriate level there shouldn’t be more sight deterioration.

However, as others suggested, it could be cataracts or increasing eye pressures which can lead to glaucoma - both can be Pred induced.

Suggest a couple of things - get an appointment with an optometrist and ask them to check for the above, ask GP for referral to eye dept local hospital, speak to RNIB (if in UK) or equivalent in another country.

Bit more info about your mother might help- what dose she’s on now, what monitoring has been done so far, etc.

[PMRpro Ambassador]

In what way is her sight deteriorating? Does she have regular eye checks? Pred itself can cause blurry vision as well as causing one type of cataract and accelerating the formation of another (both of which CAN happen in just a few months) and also raised eye pressures.

Why not write down her questions and post them here - and we will try to answer them although no guarantees, sometimes there aren't answers however much we want them.

[Perry1]

Thank-you everyone for taking the time to respond - this has been really useful. She has had follow-ups with opthamology. She is registered as severely sight impaired. She had Rheumatoid Arthritis before the GCA and was on a low dose of pred before the GCA kicked in. Her pressures did go up at this time though we were told nothing alarming. When discharged from hospital incorrect instructions were given re AZOPT application so her left eye went without drops for quite some time which I now appreciate is not great considering the high pred dose she had been on via IV then tablet form. She has seen a Glaucoma specialist this year. Again, her pressures were high but I will relay back to her when I see her at the weekend, and post any more questions. Thanks again.

[PMRpro Ambassador in reply to Perry1]

So sorry - she must be devastated. I assume you have already been in touch with RNIB? They can help a lot with suggestions about what she is entitled to. And I would be asking questions about the incorrect AZOPT application - how much has that contributed?

[Perry1 in reply to PMRpro]

We have had great support from a local charity who helped with Attendance Allowance application - is this what you were referring to re entitlement? We are continuing to ask lots of questions about the whole episode as the Azopt hiccup was just the icing on the cake. Hopefully some good will come out of it by the risk of sight loss minimised for others. Post the RCA, the hospital has implemented a fast track procedure and improved training / knowledge transfer - which should have been there before considering the number of positive cases confirmed annually.

[PMRpro Ambassador in reply to Perry1]

I'm sure there is other stuff - like help with installing hand rails and so on. There is a lot you never find out about without knowing how. And RNIB know a lot!

It isn't for lack of trying to get awareness. Ten years ago there was no English charity and no support anywhere - Scotland had a charity, there was then something in the USA/Canada, now they have nothing, it is all in the UK. But there is something seriously wrong when laypersons on a forum like this know more than healthcare professionals. Some of whom don't know the difference between arteritis and arthritis, who know nothing about the association of PMR symptoms and potential GCA, who won't take people seriously when they turn up after visual symptoms and laugh at their concern. A&E staff MUST be better trained - in Yorkshire even the paramedics are taught about GCA...

[Perry1]

You are so right and I empathise with your frustration. My mother got sent away from the Eye Emergency Unit with drops for dry eyes even after re-iterating her concerns......then next day lost her sight to GCA. Valuable lost time - I would love to campaign for changes to be made national once we are through with all of the questioning.

[PMRpro Ambassador in reply to Perry1]

They are supposed to be rolling it out. There have been questions in the House and a lot of work behind the scenes. But it all comes down to the cost of educating GPs too - they are the gateway and many have barely heard of GCA and PMR. Which when you consider that PMR is the most common cause of rheumatic symptoms in the over 65s is a bit mind-boggling - especialy since 1 in 6 PMR patients are likely to eventually develp GCA if not treated early.

We know on the forums that we have probably saved the sight of a couple of dozen people over the years - by insisting they must go to hospital and if necessary keep going back or go somewhere else. But even rheumies are ignorant - some even believing and saying that a negative TAB means you don't have GCA.

We are all not getting any younger - and people aren't queuing up to take over the jobs that are essential in any charity. You will be very very welcome. Where are you? -ish...

[Perry1]

Well that is a great achievement. I agree on the GP element - the GP was on the track of PMR and had not mentioned GCA even though there were sight disturbances. I saw an interesting article about this problem

bmjopen.bmj.com/content/8/2...

I am "down South" Dorset/Hampshire

[PMRpro Ambassador]

Which illustrates the problem - headache is actually found in less than half of GCA patients as a presenting symptom. That figure is similar for almost all the supposedly "typical" symptoms that GPs and some rheumies expect to meet. But when a patient has visual symptoms I really don't get how they can dismiss them - if nothing else, it may be a stroke.

[Perry1]

exactly......when asked by me, the doctor (eye speciliast!) who did not see further than dry eyes stated that it was the lack of searing headache which had not alerted him to GCA.

[prunus]

I have just read through your posts. I am one of the lucky ones. My son came one Friday morning when I had not been well for weeks and said he was taking me to A and E. I was kept in but it was nine days before GCA was diagnosed and confirmed by biopsy and I was in hospital.