My mum lost her vision in both eyes on 5th November due to misdiagnosis (2 GPs, a neurologist and the A&E dept missed it). Since then it has been almost non stop tests and scans.
She has been coping extremely well and adapting to life in the dark with good humour and total bravery.
Nothing else has shown up on any scans. The ophthalmologist washed her hands of her as soon as she could and was generally unhelpful despite our friendly and polite attitude, she denied any delay in IV steroids ( we have photo proof that there was a 4 hr delay between admission and treatment).
That left us with the rheumatologist who although great at referring her for tests/scans has been getting increasingly contradictory and has been saying the strangest things - eg. 'some people just don’t respond to steroids -that's why your mum's second eye went' -----> and yet all her headaches and body aches and pains, jaw and tongue pain all went - she did respond to steroids - they were just given too late. She also stated that in 99% of GCA cases there is a high reading for inflammation in the blood tests- my mum's case was therefore atypical -- now I don't believe that 99% figure - that's not true is it? It sounds like a Cillit Bang commercial - I read that 'The ESR may be normal in 7-20% of patients with GCA'
The rheumatologist also stated that they do not recommend HRT for 'anyone over 50' due to my mum's age (74) she would be unsuitable --- this sounds like complete BS to me - women over 50 are highly likely to be the very people prescribed HRT no????
Then she brought up the fact that the second hospital where my mum finally lost her sight had told her the MRI had been clear but she had now found out that the MRI stated that there were small lesions and signs of vasculitis in the brain and we would have to investigate those - but we discussed this back in the beginning of November - with her and were told they were nothing to worry about - they have always been in the report.
It was as if the Rheumatologist was going mad. Very confusing and I'm scared that this is the main person in charge of my mum's case - she is telling us to reduce the Pred by 10mg every 2 weeks - is this too fast??? I don't trust her judgement any more. (started on 60mg - first drop to 50mg last Sunday)
The GP (the good one) is excellent - he started an internal investigation and is caring and helpful.
Written by
Jeromekjerome
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Oh my goodness. I am so sorry this has happened to your Mum. Others in the know will be along shortly, but I just wanted you to know I am thinking of you.
Thank you - it's been very, very hard but I'm glad she is still here you know - a couple of her close friends have passed away recently. It sounds bad but the thought of what didn't happen was one of the only things that helped during some ugly fits of dispair ;(
I know only too well what you have been through and are still going through. My Dad was mis diagnosed for many years - he lived with my husband and I for 29 years and was ok most of those years until I noticed little things that he was doing - Example leaving hot water taps on etc. I finally convinced him to have his eyes tested again but he was still sold reading glasses nothing mentioned about Glaucoma and I rang and told them that he needed more than reading glasses and that is when they told me that Dad had Glaucoma - took him to a specialist and he told me that it was too late. there isn't anything anyone could do for him. I was told I had Glaucoma it is a long story and found that I don't have it at all so who are we to believe. The system is up to putt - but just thought I would let you know that we are all thinking of you both especially your dear Mum. We are not on our own. I do hope you both have a lovely Xmas considering all your worries and a healthier and Happy New year
This is such a sad and shocking story; I am so sorry for your Mum. She sounds a very brave person. It’s so scary to have bad experiences with health professionals. I am thinking of you both
Thank you for coming back and telling us how you are getting on. How brave of your mum - she must be an exceptional lady.
My suspicion is that the hospital have got wind of it and told her to keep her mouth shut. Most authorities would agree that up to 1 in 5 patients may have normal range blood markers - the only person I have ever seen quoting anything like 99% was Hayreh and even he wrote about what he called occult GCA - with no advance warning until loss of vision
talks about a "unique"case with normal markers. Other authors have found up to over 20% of cases with normal markers. Our experience on the forums over years suggests it is far from unique and I think a rheumatologist should be aware it happens - and your mother was typical in all other respects.
As for the reduction - presumably she is working on the assumption that since the worst has happened it won't matter if the dose is a lot lower and she can work on PMR symptoms. I think I would like to know if the GCA is wider-spread than just the head. But that can;t be established, even if she wanted to, until your mum is at a much lower dose of pred. Even 10mg interferes with a PET-CT.
Thank you I will print this information out for when we visit the neurologist on Monday (the ones who misdiagnosed in September)
I didn't just accept this 99% crap, I calmly respond to the rheumatologist with the little bit of knowledge I have already gained regarding the normal markers and varying results in patients, I mentioned examples from this forum too. Her reply was to repeat what she had already just said - this was completely frustrating and might indicate that she has been briefed by the hospital - I don't know.
Everything I read talks about initial doses of 70, 80, 100mg of Pred especially once vision has been affected - she was only given 60, even after her left eye went. Then once the right started there was a couple of days at the end of those 6 days- only once I sent a message to the doctors where they tried her on 120mg but the vision in the right eye had all but gone by then.
Thank you for the information I want all of these doctors to be correctly informed for any possible future cases.
The trouble is that once vision is gone in one eye the chances are very high it will go in the other despite very high dose pred simply because there is already too much damage done to the nerve. There is something called (I think) by the scientists in the oxygen field the golden triangle. Once more than a limited number of cells in an area are deprived of oxygen and die the effect of the toxins spreads to adjacent cells and more and more die - that central patch of cells spreads and sreads and once nerve cells are damaged the way back is almsot impossible.
Your mother was failed at the start - and the specialists all made a fatal error. They are scared to admit that - it could cost them dearly.
Ahh - I see - I wish someone had explained things like this to us, they all seem to be very uninformed.
I really hope that she isn't blind due to the dose being too low, because she had already been failed once by the mis-diagnosis and, strangely - the idea that the second eye was unstoppable and almost destined to go is easier to accept without so many feelings of horror, regret and frustration etc.
I still cannot believe they discharged and allowed her to travel to Harrogate on holiday after the left eye went, without a single warning. Having said that- she then ended up going to Harrogate Hospital where the staff were lovely, kind and patient and helpful and she had nice, quiet ward with a final view of the autumn colours over the park - had it happened in the over-crowded, short-staffed Warrington hospital where she was first admitted, losing her sight by the hour as she did would have been a much worse experience.
No - I can't believe they let her out without any counselling either. They must have known the risk. But once the one eye had gone - there were never any guarantees the other could be saved.
There was another person on the forum who had a similar experience - had had visual effects and they announced they would start i.v steroids but didn't and gave him oral pred without emphasising he needed to take them NOW. By next morning the vision in that eye was gone. Luckily the other was OK. But he lives with the question "did it make a difference?" - no-one can ever know.
oh there was one good thing - the rheumatologist told us that about a week ago - she correctly diagnosed GCA in a patient who had temporal headaches - she started him on steroids there and then and a biopsy confirmed it. It seemed to me that my mum's case had highlighted the condition to her, and hopefully contributed to this patient's correct treatment.
(She did, of course emphasise that he had high levels of ESR, CRP.)
Think the answer to that is: "I don't need to know that - I need you to know that it is possible WITHOUT raised markers ..." But there is some consolation.
I am so sorry this happened. My heart is with you and your family. I don’t know why doctors are so misinformed and unwilling to treat this condition. All they have to do is try the person on steroids to see if they improve, clinical correlation, if they do it’s life changing and saving, if not taper them off and move on to other possible diagnosis. It baffles and angers me. Your mom sounds so brave, again my heart is with you both.
Thanks for taking the time to tell us how things are going for you and your Mum.
Please keep updating us on your progress and posting for any other advice you need
Hugs to you and your Mum xx
Hi, I am pleased your mum seems to be adapting with relative good humour. Please pass on our best wishes as she adapts to the horrid circumstances and context. I am glad you gave us an update, we do think and wonder about your mum so updates are welcome. Best wishes. 🌻🌈
re: HRT [hormone replacement therapy] not recommended in 74 yr old
That's true: "For women who start HRT more than 10 or 20 years after menopause starts or when they're age 60 or older, the risks of HRT are greater than the benefits because HRT is linked to a higher risk of heart disease, stroke, blood clots, and dementia.Jul 7, 2017"
re: ESR as inflammatory factor. Another inflammatory factor, CRP, is more indicative of GCA
I understand what you are saying about HRT, of course but another consultant told us to mention it in regard to the osteoporosis risk. I don't think I was clear enough when I wrote my initial post but the rheumatologist was talking 'in general' for the population at large, not just my mums case. She told us that 'HRT is not recommended for ANYONE over 50 years old.'
I have a friend aged 52 who was prescribed HRT just last week and know of many other women aged over 50 who take it.
This statement was made along with a few other perplexing/unbelievable ones during our visit, it kind of made me scared about how we were being disrespected, it was noticeably weird!
Your poor Mum - how I sympathise with her after my own experience seven years ago. Even after my son "dumping " me in AandE with a CRP of 452 and them keeping me in, it took nine days for a correct diagnosis. In that time I was even tested for gall stones. I kept telling them on the ward that I kept loosing my vision. All I got was a Dr asking me what it was like and what did I see when it happened. Fortunately for me they got there finally just in time. Please give your Mum a big hug from me I am so sorry to hear your news and feel for her.
I know I was - I still shudder when I think about it. My OH and I have been walkers all our lives and I was probably fitter than many at that point which no doubt helped. I had never heard of GCA before then and had to write down what I was suffering from. Until I was given predisolone I could not even put my head on the pillow it was so sensitive.
They kept asking me where the pain was and I kept telling them I felt terrible. I had an agreement that they would give me paracetemol when I got too uncomfortable. However there was one Sister who would not play ball one night and made me wait 'til the ward round. You can imagine my feelings towards her. After that I kept my own supply. I was never going to let that happen again. When they started me on 60 late one Saturday evening I knew they had finally sust out the problem but for about
five days I augmented with paras. Sixty did not last twenty four hours.
I hope you reported her? I had that experience with a charge nurse post-op broken leg - so I split on him to the consultant who gave him the works. No problem after that!!!!
No I didn't. If I had not felt so aweful I would have got a cab home to get some. I'd also just had the norovirus bug which swept the ward too to add to the situation.
I wish I did - I had so many tabs open on the desktop - I found it while wading through different studies - I will add the link if I come across it again.
Ah yes, that's the one. As with a lot of GCA studies I've seen, it ends up being pretty inconclusive. I was interested because my mum had been on a low carb diet for over a year and was the smallest she had been for years, although she has always been healthy.
I doubt that a recent change in weight would have made that much difference - I'm not entirely convinced by the work anyway. I certainly know quite a few normal weight people who have developed GCA - and these things are most likely to be the culmination of a lifetime of attacks on the immune system.
Yes - there are so many possible contributing factors - another thing we were talking about was the shingles vaccine she had when she was 70 (she is 74 now) - they have been exploring links with that too I believe.
The vaccine is certainly linked to PMR developing - and shingles!!! I don't think breaking your brains trying to work out where they come from is a good idea - dwelling on what if is not a good place to be.
Can I add my bit? My GCA started the day after I landed at Heathrow from a great holiday in Italy. The only exceptional thing that had happened to me was that I had been badly bitten, at a beauty spot, by a hornet. My Consultant would not have it that it could have anything to do with my GCA. The bite was on a finger. To this day I
It could have been the final insult to the immune system - if it hadn't been that it could have been something else. But I really do wonder why they are so adamant things aren't connected - just say you don't know!! Because you don't!
So sorry to hear what has happened to your Mum ! She certainly sounds very brave . I’m sure it helps her enormously having your support and close involvement in her life . I hate to think where she would be without you -this would have been so stressful for you too ! All the very best to both of you .
Thanks so much for coming back to us. It sounds like your Mom is indeed a very special woman and I believe the daughter she has raised is very special as well. You both have been through a horrible ordeal and I wish you all the best as you continue to manage your Mom’s recovery and treatment.
So sorry your Mom is going thru this! She sounds a brave woman! I’m in Patient Safety and Risk Management and what your physicians are displaying is litigation defense behavior. They are now realizing they made some big misses. Would be good if you can find new who are more familiar with the disease if not a frank discussion about how they will insure proper care moving forward is in order! There are many link in here to professional guidelines which say different than what you are being told. Unfortunately we do seem to need to be strong advocates for ourselves with these auto immune diseases.
So sorry that your Mum has lost her sight, Jerome. It shouldn't be down to luck - the luck of finding a rheumatologist or doctor who knew how serious this condition is. I was mis-diagnosed - and could have lost my sight too, having auras, spectacular flashes. But, had the good fortune to be diagnosed correctly in hospital.
Give your Mum a hug and best wishes from me (in New Zealand).
I'm so glad to hear that you received the correct treatment - I love hearing about everyone who gets the right diagnosis or treated in time - just because it's how it *should* be, I'm so thankful for it because witnessing what has happened to my mum's perfectly good eyesight - how it has been taken away from her because people didn't listen to what she was telling them is ---->horrendous.
Every time I bring it up with the: GP, rheumatologist, neurologist, ophthalmologist - I say to them (quite politely I might add) 'why do you think, in hindsight, my mum's list of symptoms was an exact textbook case of PMR GCA and yet nobody ever diagnosed it?' ---they all tell me what a difficult condition it is to diagnose - nobody *ever* says - 'it was a mistake' or 'we are going to change our protocol' or 'I'm sorry'. They get such a zombified look on their faces - it is making me explode inside.
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