Macular Society
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How do you fare with the "as and when" regime?

I would be interested to know how other patients fare with this system. Have you found it has led to further permanent deterioration?

On 31st July my scan showed a build up of fluid again after it had dried up. My appointment for the necessary injection was then booked, but not until 1st September, a waiting time short of 5 weeks. I now find that the wavy lines in my affected eye are quite a lot worse than they have ever been. I hope the injection booked, still another 12 days waiting time until then, will clear the drastic increase of waviness. I would like to add that my eyesight does not seem to be markedly affected

Has anyone else had any experience with this?

32 Replies
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Dear ayayay,

It may be worth contacting your ophthalmologist via their secretary and flagging up any concerns.

Please do not hesitate to contact us if we can be of any further help.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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Hi Rosalyn

I received your first message a few minutes ago and replied in detail. For some reason that message and my reply has disappeared from my screen when your second message arrived. Anyway, thank you. Will probably contact you again soon.

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Hi ayayay

Yes I'm afraid similar happened to me. I had 4 initial Injections for CNV and all looked good so I was placed in "As and when" Unfortunately 6 weeks after last Injection things were going wiggly again. So I had another injection which helped but it was by then more than 7 weeks after last Injection and I feel I have a little more damage. I have since had another scan a couple of weeks ago which has showed slight leaking still and the consultant has recommended another injection.

Today i have just received 2 letters with appointments one for macular assessment and one for a wet AMD clinic. To my knowledge I don't have wet AMD so I'm presuming it's just the name of the clinic I am under that day. I hope anyway!

This really is a worrying condition.

Best wishes 2468G

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Thank you for your reply. It is most unsettling when you don't know where you are. They try to fit you in the best way they can for all slots are taken by the regulars. On one occasion I even had to go for the injection on a Sunday. It always seems a longer waiting time than being on a regular routine. The worry is, how much damage will it cause?

At least I have a date for the next 2 injections; after that it will be a waiting game again.

I hope everything works out for you alright.

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I'm concerned we all need to be regulars! I think you are right about being slotted in as I keep being sent to other hospitals in the area. Not complaining. All the staff are lovely.

Hope things work out for you too. 2468G

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Clinic J at MREH is for macular treatments generally.

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Yes, I'm hoping it's a general clinic. My diagnosis is CNV due to myopia. Not sure if that can turn into wet AMD. I would think I would have been told by a consultant. 2468G

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The interval between my injections was increased after my WMD became static. About 13 days before my next injection was due, my sight changed noticeably for the worse.

The letter Moorfields issues after each injection states that if there is any change in sight, go to A&E. (I think it actually says contact the hospital - meaning in effect, go to A&E)

I got there at 11:00am, was seen and diagnosed with a 'bleed' -given an injection, and on my way home by 16:30

If at all possible, go to A&E - or go to someone in exactly the same way - and with the same urgency - as you would if this was a first occurrence

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Thank you, yotboy. I never get a latter after the injection unless I specifically ask for it, nor does my appointment letter mention anything about what to do if there is a change in eye sight meanwhile, although it states this in the booklet I was given 2 years ago. So I am aware of this.

My eye sight, when I go about my business, has not changed drastically, my other eye compensating. It is just that everything looks a bit out of shape. Only when I look at the Amsler grid do I realise how distorted the lines are, much more than I have ever seen before.

As far as I know, I have never had a bleed in my eye, only swelling, a build-up and leakage of fluid, which, I have been told, is not as serious as a bleed. Hence my reluctance to go to A&E with now only 10 days to go. I may now consider it though.

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I'm assuming you're not the Prime Minister with pressing matters of state needing urgent attention, and almost certainly you're not a celebrity junk show contestant awaiting audition, so would strongly recommend you spend your day in A&E.

The chances of them sending you home with a flea in your ear for wasting their time are near zero.

Do it!

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Thank you, yotboy. I'll be told!

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Good boy - do as Mummy tells you!

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I do not understand why an injection is not given to people posting here on the same day the scan showed deterioration, unless this is happening in Europe or other areas outside the USA. I was getting a shot in my right eye for WMD every 4 weeks. After several months doctor suggested waiting 5 weeks. Scan showed there was still no deterioration, but I got the shot the same day. The doctor then suggested waiting 6 weeks. After 6 weeks, the scan showed deterioration, so I was given a shot immediately after the scan results. Every shot I have had for the past 2 years has been immediately after the scan on the same day as the scan.

I spend 6 months in PA & 6 months in FL & in both locations I get the shot the same day as the scan. This seems to be the normal way of doing it in the USA. Would like to know in what countries the shot is given weeks after the scan shows deterioration.

Just to let everyone know, I was getting Avastin, but after 18 months, the Avastin did not work anymore as deterioration showed up after 4 weeks. In July, 2018 I got my 1st shot of Eylea. Have a scan tomorrow after 4 weeks to see how it worked & I will get another Eylea shot after the scan.

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I'm in UK - and getting the 'injection' on the same day as the scan. Always have done.

You have alot more people in the US getting shot than we do.

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We have our shot on same day, unless you are attending the stable clinic, I managed to get a year off injections with my left eye and have gone another nearly 3 years, but then my right eye started so having regular 6 wkly eyelea in rt eye now.

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Thank you for your reply. I am in the UK. I suppose it all depends on the state of each individual case how urgently an injection needs to be given. I have been told that a leakage of fluid, which I tend to get, is not as serious as a bleed. I am just concerned about the damage it may cause, having to wait so long.

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Thank you for your reply. I now understand why there is a wait for some. Those with a leakage seem to not get the injection immediately after the scan, but because mine is a bleed, I do get the injection immediately after the scan. Thanks for clearing this up for me.

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That's about it in a nutshell, but I suppose a massive leak would probably need to to treated quicker.

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It's worth swotting up on the right length of time that should be left between injections. The consultant will not be informed how long you have to wait. He may be horrified you've had to wait so long. The people booking your appointment won't necessarily have been told how soon you need to be see. Whereas there is legislation how long you should wait in A&E, (for instance), there is very regrettably NO legislation about how long patients needing injections every 4 weeks have to wait. Hence you MAY well have been left for much longer that you should have been.

I am so sorry that I am coming over as a Job's comforter here.

The best you can do is get yourself informed from the consultant exactly how long you should have been left before your next injection.

I had enormous difficulty getting my injections on time, (in my case every 4 weeks). However I succeeded with the help of the Macular Society and writing a pretty stiff letter to the Trust, copies to GP, MP, consultant AND booking clerk. It had a miraculous effect; and things are so much better now. But it was a monumental struggle.

The basic trouble is getting a pint onto a 100 ml bottle. "We are too meny (sic)". I just hope with the hugely underfunded NHS at the top of the Governments pecking order, things will gradually improve! I wish you all the best Ayayay. Saying your name out loud makes me feel exactly how I feel about the situation.

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Thank you for that, fed13. I know what you are saying. You are right in that the consultant would probably not have stated how soon I needed the injection. As far as the time span is concerned, it surely depends much on each individual case and even on each individual occasion. My specific condition - build-up and leakage of fluid - has been pretty erratic with longer and shorter spells of dryness. Even how fast the build-up progressed had been varied. So in my case it would be hard to predict.

In an ideal world, I do believe I should have been given the injection more or less straight away to avoid any chance mishaps, but as you say, overloaded as the NHS is, there are too many more urgent cases in the system and so the slightly less urgent cases will have to wait. Sad but true. The difficulty is for the patient to realise when it is urgent and when it is not unless you are willing to wait until there is a "drastic" change in your vision.

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It could be a bleed this time. In the US, a sudden appearance of wavy lines would definitely be evaluated within 3 days by phoning your retina specialist and if it is a bleed it would be followed immediately with an injection. I would not wait to be evaluated. The scars from bleeds are permanent.

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I had the wavy lines for 2 years now, but they sudden have become far more exaggerated. They have never been as so bad.

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It would appear to depend on which hospital you are attending in Uk and what their routine is. I have always had injections on the same day as the scan, with one exception when, I had an emergency appointment and had to go back the following day. I was told more than 18 months ago that I would have injections, as and when needed. I find the terminology strange. Other than the loading injections, I have always only had injections if there is fluid or a bleed - so what is the difference? Anyway, after going 6 months without an injection, but regular scans, I had a massive bleed in both eyes that did a great deal of damage. It has taken me at least a year to come to terms with the situation.

Do you have monthly scans Ayayay? I wonder how many hospitals have the same system as your's. Not everyone lives close to the hospital they attend for injections. It must be a nightmare for some.

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Hi Bobbie

I am so sorry you had such a bad experience. And, yes, I think it is a postcode lottery. i have now been given dates for the next 2 injections after a break of almost 5 months and I have also been given a date for a scan and consultation 4 weeks after the 2nd one. Most of my scans lately have been at 6 to 8 weeks intervals, but sometimes they do a scan before injections. It seems all very hit and miss when what procedure is carried out. Having said that, my VA has not really deteriorated greatly from 2 years ago, for which I am grateful.

Best wishes

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Hi ayayay, when I was having inj in the early days I would have them same day as scan or within that week ( also given date of next appt before leaving). It seemed like they were well organised. As time went on and we tried to lengthen reviews the inj date became separated from the scan ( our admin staff also changed around the same time, they increased the number of inj per day, and we had to wait for next appt to arrive in the post. Clinic review letters got later and less accurate).

Having said that, when my vision worsened drastically ( grey blob) they always managed to give me an inj within a day or so.

Once a Dr did tell me I'd got optic nerve damage since the last review but I'm not sure what I ought to have noticed or what might have been done.

My rule of thumb is if it affects how I read I ring the clinic.

Wishing the best for you xx

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Hi eyesright, my immediate concern is the sudden change in the wavy lines. They are far more pronounced than I have ever seen them. Two days ago I saw a pea-sized ring with a bright middle on a wall. I had never seen anything like that before. It only lasted about a minute and then it was gone. I have not seen it since, but ever since that time the waviness has gone rather haywire. Apart from that I am fine. I am still debating whether to go to A&E in the morning at the risk of making a fool of myself. I have been trying to get some information on the net, but is all about the general stuff.

If anyone else has experience with this issue I would like to hear from them too.

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Can you not ring your clinic and ask them?

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Yes, that's what I intend to do as soon as they are open at 8.30. Thanks, eyesright.

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Hi Ayayay, my appointments are every six weeks after the first three Eyelea. However once computer was down so day has changed to Mon. When I first had the ? Leak, I did have to wait around 4 -6 weeks to have fluerescin angiogram to confirm it was wet AMD, before I started Lucentis injections, that year the clinics were jam packed and new computer affecting appointment times, which were stretched out to six or seven weeks apart. It is much better at present, I think extra clinics are on. I'm on eyelea now which can stretch time between appointments if all is well. My vision luckily is still very good, although not the same as before, I had problems before injections available. I saw consultant last time who said carry on six weekly as it is static. I do not have wiggly lines in that eye, although I have a bit in my left from permanent damage. I consider myself very luckily as my parents lived when no treatment was available for wet AMD. If in any doubt contact hospital, we are lucky to have an emergency eyeline to ring, and they got me in quickly, although there was a time lapse between investigations and treatment I am still ok. Consultant said it was a small leak.

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As you can see from my reply to eyesright, I am confused about how serious (or not) this is in view of my injection being due in another 10 days anyway. Help!

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If I was worried I would contact eye department for advice, only an eye specialist can assess the problem and make diagnosis. At the end of the day our eyes are too precious not to act on a problem.

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Thanks IvyRose. I have been given an emergency appointment at my eye clinic for this afternoon. Will see what happens next.

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