Do any of you good people on the site know of anyone who actually suffered sight loss after being put on an I V steroid drip with regard to the above? From the posts I have read since I have been on the site, I am yet to hear of anyone who lost sight after being put on the drip. In my case, for some yet unknown reason, I was not put on an I V steroid drip, just told to take 60 mgs of oral Prednisolone that night, then by the next morning I had suffered sight loss that I had not suffered the night before.
I am very interested to know, as I have a meeting with an eye consultant at the hospital coming up, when I want to know the reason(s) - not given to an unknowledgeable me at the time, as to why - it sounds like from replies I have received from people on the site, that I would have had a much better chance of not losing sight if I had been put on the drip.
I look forward to your replies.
hope you are all still up for the fight of beating the horrible dragons of PMR and GCA, and extinguishing the dragon's fiery breath.
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bribaz
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I am afraid that I cannot offer a scientific opinion, not being qualified. I just want to say that I am so sorry that this has happened to you. It must be frightening. I expect there will be many factors contributing to this outcome. Is it temporary?
Thanks for your reply. Hope you are going on okay.
No. the sight loss in my left eye is permanent, due to the inflammation damage to my optic nerves.
What I can gather from this site, is that if I had been put on an I V steroid drip, the inflammation would have been reduced sooner, meaning the sight loss might not have occured, or at least not to such a degree. If no-one on the site knows of anyone who had a sight disturbance, was put on an I V drip, and did not lose any sight, then it backs up my case as to it being beneficial to me not losing any (or not as much) of my sight.
I have a bee in my bonnet about this, so to speak, as it could have been crucial.
I saw my Optician on Friday, for extra payment you can have all sorts of eye examinations using the state of the art equipment, including the eye and the back of the eye hugely magnified. He was familiar with GCA and said that there was no way that he could tell whether it was present, even with all this equipment. He said that for every 10 people he sees with visual disturbance and suspected GCA only one turns out to have it. He said that in losing the sight in one eye, the other eye quickly adjusts to give you reasonable vision. The big danger is losing the sight in the second eye shortly afterwards. Thank goodness you were in the right place to prevent that happening.
I can understand the “ bee in your bonnet” I would be the same. All the advice you’ve had from our most experienced people is sound. Please keep in touch and let us know how you are getting on.
Yes, as you say, at least I did not lose sight in my other eye.
Dorset Lady is an inspiration, and the person on the site who I can relate to most, as she also lost sight in one eye. She said the same in that at least we have got one good eye, as it could have been much worse.
As to the optician you mention - so one in ten have GCA - how would he treat these cases, in respect of would he tell EVERYONE with sight disturbance to go to the hospital emergency department straight away? (He would not know who the one in ten with GCA was from a scan at the opticians at that time from what you say).
This is all such a minefield for all of us with PMR and GCA, with so many grey areas and differences in practices, from GPs, eye consultants, Rheumatologists and Opticians, but at least things seem to be going in the right direction to raise awareness and to try to standardize practices.
No-one can tell from an examination of the retina that someone has GCA. What they MAY be able to see is changes in the appearance of the area where the optic nerve joins the back of the eye. If the blood supply is compromised the optic disc may appear swollen and pale. That can be due to a few causes, one of which is GCA.
However, that is a sign of reduced blood flow over time. Sometimes GCA hasn't reduced the blood flow in the particular artery very much at the point f examination and these signs are not obvious but then there may be a stroke-like event later. It is like the difference between angina and a real heart attack in some ways.
Makes me wonder if I had the arterial stroke you mentioned - as the biopsy on the following Wednesday showed the artery to be blocked. I had been on the 60 mgs a day Pred since the previous Friday at that time, so maybe not unblocked by the Pred.
I would say that MAYBE 60mg was not enough. I was put on 80mg within an hour of attending A&E which saved my left eye (as you know too late for right eye, already gone).
As an educated (or maybe uneducated) guess I would say that had you been given medication immediately whether IV or oral it MAY have saved your eye, or at least partially.
However, I can't say hand on heart it DEFINATELY would have saved it, and I don't think anyone can.
Everybody is different, and it depends on how quickly and/or seriously the optic nerve is damaged - cases vary from person to person, some lose right eye, some lose left eye, some lose both, for others it's only partial.
I know you want answers (I fully understand) but sometimes they aren't there to give...you just have to accept.
However, if you think negligence played a part, then make a complaint...but sometimes it's very difficult to prove, especially if it's the first time the doctor has seen you, maybe inexperienced and it's in a busy A&E department.
We all make mis-judgements, but some have more profound effects than others.
Thanks for your reply - I know we are in the same boat as to us both having suffered sight loss in one eye.
I am mainly going by the fact that I could still read the eye chart down to the next to bottom line (I had 20/20 vision) with my left eye on the Friday night, then by the Saturday morning the shadow had come down into my central vision, and I could no longer read any of it. I keep thinking if they had put me on the I V drip on the Friday night that the outcome would have been much better - of course, I don't know that.
It just seems to be the case that of the posts I have read, posted by our fellow sufferers, that everyone with sight disturbance, who was put on an immediate I V drip, did not lose any of their sight. That is why I have posted this post, to see if there are any cases where someone with sight disturbance was put on an immediate I V drip but still lost some sight.
I know that I need to get rid of this bee in my bonnet eventually, and have the same up-beat attitude that you have, and that I admire you for, but it will take me time, as I am sure was the same for you to come to terms with.
I'll bet you did not like the Ice age you came back to after your holiday lol.
In your circumstance it may well have. Obviously the quicker it gets into your system the better - hence the IV option.
By all means ask the question, but I think you will get the answer that both PMRpro and I have given ....no one can say for sure, but certainly it would have be prudent.
Early days I was very angry with my GP for missing the signs, but extremely grateful to the hospital registrar and his consultant for their immediate actions in saving one eye.
We all want answers, but don’t let that overshadow the fact that you have sight in one eye - and be grateful for that. It’s certainly not as good as having two, but as you can see from me I doesn’t stop you enjoying life. Frustrating at times, but really not much more than that!
And yes it’s perishing cold! But hey ho that’s life.
Yes, you are right that at least I have sight in one eye, and going by what I have read, there was a 20 - 50% chance of losing sight in my other eye. At the time, on the Saturday morning I have mentioned, one of the eye doctors told me I could also lose sight in my other eye. That thought was devastating to me.
If the young optician I saw on the Wednesday afternoon, before the Friday afternoon when I went to the hospital, had asked me more questions or been more knowledgeable about what she saw in the scan picture she took of my left eye, that might have made a big difference. I told her about the shadow in my left eye vision. A more knowledgeable older optician who I later saw knew all about GCA - there was a good chance she would have told me to go to A & E immediately. All iff's & but's I know.
As you say, at least we both have one good eye, and have to be grateful for that!
....I forgot to mention - I know that 60mgs is the standard amount of oral Prednisolone to start someone on with suspected GCA / sight disturbance. I am only 5'3", my normal weight used to be 59kgs, which I was at for many years, and at a good point in the BMI range for my height. My weight had dropped around 18 months earlier (I think mostly through stress) to average around 52kgs, so going by the 1mg per 1 kilo of body weight, 60 mgs was probably about right - whether 80mgs would have made a difference i don't know.
Not on the forums no, but I have seen reports in the medical literature of patients losing vision despite being given high dose corticosteroid infusions.
As DL says, there is no way anyone can say whether an infusion WOULD have saved your vision, just that it would have been a better option. I am left to wonder whether maybe they didn't have a bed and their protocol is to keep patients on high dose corticosteroid therapy as in-patients for monitoring.
I did wonder at the bed availability side of things myself, but was led to believe that hospitals always kept a small number of beds for urgent cases.
From what you say, there would have been no guarantee that I would not have lost at least some of the sight I have lost. It is just a case of when I was told by the eye doctors (at least 2 if not 3 of them were talking about my case), that they had decided against putting me on the I V drip, that they did not follow it up with a reason - I did not have enough knowledge at that time to question their decision further.
If the shadow had already been in my central vision on the Friday night, then I would not have had any reason now to wonder about what difference the I V drip would have meant. It is because the sight loss happened over-night in the crucial time between the Friday night and the Saturday morning.
Thank you for sending me the links - I will look through them with interest.
They should do - but you have read the media reports for this year surely? Hospitals have been running at 98% plus occupancy - where safe is 85% to allow for emergencies. That's why patients have been spending hours on trolleys waiting for beds - waiting for other patients to be sent home or even die to free up a bed.
That is what happens when attempts are made to run a hospital like a factory or shop. Just in time doesn't work in hospitals, medical conditions don't work like that - but the powers-that-be thought that all surgery can be done as day surgery or with early discharge so they built hospitals with fewer beds. Then there was the concept of "care in the community" - but there isn't any so patients who are not well enough to discharge home alone remain in hospital because there is no other option. The result is that if you can walk and fend for yourself - you are sent home from A&E. And consolidating specialist units makes sense - but if you close A&E departments and send patients to the next hospital that means that department gets double the patients. But probably weren't given extra accommodation and staff to deal with the increased numbers.
And it isn't going to get better any time soon I fear.
I doubt they would admit I was not put on an I V drip because there was no bed for me though, if that was the case. I hate to think that was the reason. I would have been prepared just to sit in a chair or lay on a trolley with the drip if I had been given the option, but that certainly would not have gone down well with the ensuing publicity.
The straight question to them should be
“Was I treated in line with the evidence based clinical guidelines “
If you weren’t then ask why not and what alternative evidence base did they use.
Sometimes it’s better to concentrate on asking a few, well chosen questions and insisting on answers to them. I am not sure that mentioning other patients experiences are helpful because you don’t know all the facts. Concentrating on the evidence base and getting them to account for their actions is language that they understand. It might be worthwhile printing out the guidelines that were in operation at the time and highlighting the relevant part.
That is a good point, and a good question to ask. I will ask that question at my meeting. As you say, probably better just to stick to the facts in my own case.
I hope the (undisclosed) answer is not what PMRpro mentions as a possibility - that they simply did not have a bed! - They would never admit to that if that WAS the reason.
I wasn’t admitted for any of my IV Methylpred infusions. From memory you just need monitored for 30 minutes afterwards.
Patients get IV Methylpred routinely for a number of reasons without hospital admission.
I hope you get answers, might be worthwhile asking if there was ever a M&M ( morbidity and mortality meeting ) or SAE ( Significant adverse event ) done into your case and what were the conclusions.
I would stress that you are just looking for answers and that your motivation is that no other patient loses their sight in similar circumstances. Hospitals now have a duty of candour. Requesting your notes may be helpful as well to see what the clinical rationale was for their actions.
Not heard of the M&M and SAE before - will certainly ask. Copy of motes as well might be a good idea as you say.
I know the idea is to make sure that no-one takes any chances on losing sight in the future, and every patient expects that they receive the best possible and quickest possible treatment in the future when there is a danger of sight loss.
I will post the outcome of my queries on the site once known.
Thanks for your advice. Hope you are okay and in good spirits.
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