Macular Society

Injections stopped

I had my 5th eyelea yesterday and was told the injections were, as from now, put on hold unless needed. I fully understand that when wet AMD dries up and becomes stable, injections serve no purpose unless maybe to Keep the condition stable.

I know I should be glad for the reprieve and for the fact that my eye responded so well to the treatment, and I am! But I cannot help feeling that it is a bit premature. The vison in my treated eye is now 20/50 or 6/15, which is pretty good, though the wavy lines still exist and will probanly remain due to permanent damage to the macula, while my right eye with dry AMD and a more severe cataract and a whole shower of floaters has the same visual acuity, except that the background looks slightly darker.

I would like to hear other peoples' experiences after their treatment was halted. How long took it for the new blood vessels to grow again? What was the outcome?

I will be seeing the consultant beginning of May and I will have my questions handy for him.

Best wishes to all of you wonderful people.

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Hi, that is good news! I think it must vary massively from person to person and also on the type of macular degeneration. I had a year between two injections for myopic CNV when it first started. You are right though, if there is no bleed then there is no purpose in having an injection, as long as the eyes are monitored. Good luck, fingers crossed!

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Thanks for that, Ceri2. Yes, we are all individuals and respond to treatment in different ways.

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Hi Ayaya

That's great

I am only just coming up to 3rd injection and for brvo but have a friend who only needed 2 injections for AMD and then is just having check ups. I think it must be quite individual but you could probably google studies- I did for the long term in bro after injections and it showed the range of results people have had

Good luck

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Thanks rosyG

I did look up on google, as I always do, but there seems very little information on what happens when treatment is halted. Just a few confusing statistics here and there. It seems that nowadays the system has changed from systematic treatment over a long period of time to an "as and when required" treatment. Only time will tell how successful this is. All the best for your own journey of uncertainties.

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Hi Ayayay80

I was very interested to read your post and look forward to reading other people's experiences. I have had three Lucentis injections and am aware there will be a time when they will come to an end. I am worried about this because a) it will mean the eye has stopped improving and b) will I notice a deterioration and make an appointment in time. I know I will have regular monitoring appointments but the worry is still there. Weird to want to have an injection in my eyeball!!!!

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You hit the nail right on the head, cwc123. I share your worry that things might go wrong between monitoring without my being aware of it. After all, I was not aware how serious my condition was when I originally went to the optician, thinking that a new pair of specs would solve my reading difficulty, never realising that there was anything drastically wrong (apart from getting older). I could easily have carried on for another 6 months and perhaps lost my central vision. So no, it is not always obvious when one needs help quickly. My vision is what it is at present and will never improve from here on, but it is still pretty good, so I cannot complain. What worries me that each time the neovascularisation returns and is untreated for a while, more permanent damage to my macula will occur with the result of more vision loss. As you say: Weird wanting an injection into the eyeball!!! I just feel treatment has been stopped too soon, but nowadays it seems a case of "treatment as and when requred" with the uncertainty how it will pan out.

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Hello, thanks for sharing your feedback.

Mr S has been attending clinic for two years with BRVO, from an initial bleed with pretty much total vision loss in one eye after a massive bleed. Quite a bit drained by itself, ahead of injections commencing nearly 2 months after the initial bleed. He has had two sessions of injections. The initial three injections and then monitor for around 9 months, then the opaqueness returned and so he was prescribed a further 2 injections but only had 1. Mr S is now on 3 monthly reviews 2 years in but at the last appointment with much tapping of the Consultants pen, he is under orders for an injection next appointment. Mr S reports varying amounts of opaqueness which drains well early in the day and on the eye chart 2 letters were read incorrectly at his last appointment. We return to clinic in June and will report again.

Good luck with your journey

Kind Regards from The Smilers

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Thank you, Mr & Mrs Smiler. It seems to be a roller-coaster ride even when you think your treatment has finished. I already mentioned in other replies that the "as and when required" treatment is full of uncertainties. I just wonder if this bitting and batting does more good to the health of the NHS than to the patient. It is a worry.

Hope all goes well for Mr Smiler at his next appointment.

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Best of luck to Mr S x

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thank you for sharing this- very helpful for me- have 3rd injection in a week's time for BRVO but am expecting every 2 months after that but won't know until review in May

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I am into 4th year of eyelea injections for both eyes for wet AMD. Injections were every month for 3 years and now every 2 months. I have always been told the gold standard is lengthening time between injections once you have gone 3 consecutive times with no leakage. My doctor has always been very clear about the long term plan which we still discuss every visit. Cataracts have now entered the picture for me but ,hey, each of us is very brave and are learning to roll with the punches. Pun not intended! 😎

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Hello Sreadhomer

Thank you for that. It is amazing how much clinics vary in their ideas for treatment. Since both of your eyes are affected I can see the wisdom in keeping the injections going. I am glad for you, despite you having to go through the mill on a regular basis. The eylea booklet states exactly what you are saying about gradually extending the time between injections.

My worry is that after only 5 injectins, the last 2 occasions without any sign of leakage, my treatment has been put on hold. I just feel that that is too soon. I too have cataracts in both eyes, worse in my "GOOD" eye with dry AMD so that the vision in that eye is no better than in the bad eye, although all in all my vision is still pretty good. I shall see (if I can) how the saga goes on.

All the best.

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I was going to say that the Amsler grid has been quite helpful for me over the last few weeks- it showed the improvement from the first 2 Eyelea injections and I can tell there is still some oedema as there are some very slightly wavy lines- so I think you will be able to monitor what is happening. Hope all goes very well for you.

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This is interesting - I have myopic CNV in one eye. I have had 7 injections but they were stopped because the scarring on the macula was too significant and the injections didn't improve my vision. Now 18 months on, I have recently been discharged from the macular clinic at the hospital after attending for 3.5 years as 'treatment to the bad eye will never improve the central vision'.

I am a bit worried about that but trust my optometrist at the opticians who uses more up to date machines than my NHS clinic and sees me every few months. I know that if there was any concern, she would immediately refer me again. I am considering emailing the consultant re my concerns over my discharge - I found out recently by chance that there is a Scottish Vision Strategy and I'm interested to see whether the guidelines have been followed.

This is a journey for us all and a very bumpy one at times - best wishes everyone.

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Hello Jayral

I fully understand that you are worried. If you can trust your optometrist at the optician, at least that is something. I would not trust mine. Although she diagnosed AMD in both eyes, she told me I needed no treatment yet. Well, she was wrong!

What worries me most is that, while my injections have been put on hold and I will only be monitored - I don't know yet at what intervals - the blood vessels may start growing and leaking again without my being aware of it and perhaps causing yet more scarring.

Anyway, is your other eye still healthy? I sincerely hope so. Wishing all the best xx

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Very interesting. I was told at my last visit to the hospital clinic, that instead of monthly check-up they were stretching it to 6 weeks with a view to gradually increasing the time. I have wet AMD in both eyes. I wasn't told whether my eyes had not suffered any further leakage - only that there was no plan for further Eyelea injections at the moment. Reading other's posts, I realise how little I have been told, you all seem to know a lot more about your eyes than I do. At least this gives me an idea of what questions I should be asking. I was told to contact the clinic if there was any sudden change in my sight.

How do you plan holidays? I have wondered what would happen if you were aware of a sudden change in your sight and you were say, on a small island or cruise ship.

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Hi Bobbie

It is common knowledge that most consultants are not forthcoming with information unless you ask them. Mine tell me very little and even when I saw a report sent to my GP there was hardly any detail on it. Write a list of questions to ask at your next vist, because without your written list you are likely to forget what you had meant to ask.

You do not say how many injections you have had. It seems the rules now vary so much from clinic to clinic; cutting down on costs seems to be the criteria. At our clinic injections are halted after two sessions without bleeding or leakage of fluid.

As for planning your holidays, make sure you take up an Insurance in case of illness, not just the type for cancellations or loss of luggage. It may cost a bit, but at least you will have peace of mind. Wheter on a desert island or on a cruiser, you should always be able to see a doctor, and if not, mobile phones are useful for emergencies. So do not allow your AMD spoil your fun. All the best.

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Thanks Ayayay. Yes I do intend to take a list with me next visit, later this month. I have lost count of the number of injections - not because it's been years of them, jut not that good at remembering!! Left eye about 18 months. 3 for the first 3 months and more or less every other month since. Same for right eye but just over a year.

You are the only person, other than myself that has mentioned "injections being stopped". My first thought was, is it good or bad news? It will be interesting to see how many others report the same.

Best wishes.

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Thank you, Ayay - I agree with you about not spoiling the fun; my very young grandchildren live in USA and I try to travel as much as possible to spend time with them while I can literally see them - the cataract operation in my good eye has made that even more possible! I am very lucky with the optometrists at my opticians in Aberdeen - they are in close contact with the hospital eye clinic and will see me whenever I have concerns. Eye tests and eye health appointments are free at opticians in Scotland which is a bonus.

I have also had little information from the hospital macular consultants apart from one doctor (a registrar) who was very thorough, showed interest and fast tracked me to the cataract consultant. Sadly for me, she has moved south and my first visit after she had left, I was promptly discharged from the clinic altogether!

Like many on here, I rely on information from various websites and the Macular Society.

Best wishes, Jayral

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Hi ayayah. Hope all continues to go well for you x when we have spent months or years worrying about our sight it's not surprising that we feel a little adrift when treatment ceases.

Its good that they've stopped the inj because you don't need them rather than they can't help anymore.

Use the amsler weekly , it should give you an early warning if any need to go back (and if it happens that you do need to I would go straight to a&e).

Here's to not hearing from you again! Ha ha xxx

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Hello eyesright

Have you ever had that "not-wanted" feeling? I get your drift though. I guess you are right though when you suggest I no longer need the injections because my AMD is stable, but at the same time, I have reached the stage where the injections cannot improve my vision as there is permanent damage, but having said that, my eye sight is still pretty good and I am grateful for that.

I still use the Amsler Grid on a regular basis. Nothing much has changed over the past 2 months, though the lines are as crocked as they have always been since before treatment started.

All the best. xxx

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Good to hear that your condiition has stabilised. Presumably you will remain on a review program with an option to call the clinic if you have concerns. Worth clarifying that when you next see the doc.

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Thanks, Rennatk. I have a review at the beginning of May. I will learn more then what the plans are. Hope all is ok for you.

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Just in case you didn't see this, thought I would cut and paste!!

Furthermore, results at week 52 of the CLEAR-IT 2 study showed that pro re nata (PRN) dosing maintained the significant anatomic and vision improvements established during the 12-week fixed dosing period.83,84

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Thanks, Rosy. xx

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Hi there,

Would love to speak with some folks about stopping treatment. I'm working on an AMD study right now and think these perspectives are very interesting.

Please message me if you are willing to provide some insights!

Thanks,

Laura

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Hi Lily,

For reasons of my own and after considerable research I went against the clinics advice and stopped the injections for AMD in my left eye. I started taking Areds2 and CBD oil and have done so or a few months now. I also have drops in both eyes to guard against the onset of Glaucoma. Just before Christmas I attended the Glaucoma clinic for tests which will be checked at the virtual clinic in April, I was rather disappointed with this news as I wanted to know if the Areds2 & oil were working. So today I had to go to the opticians that picked up the AMD in the first place 2 years ago. The result of their tests put a big smile on my face, no change in prescription, no bleed at the back of my eye, no scarring, no sign of cataracts and the puff test is within the normal zone. He said it is all good news in fact as I had had AMD I have very good eyesight! I would not advise anyone else to do what I did and give up the injections as because it has worked for me at the moment it isn't to say it would work for everyone given that we are all different.

Regards

Sylvia

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I haven't halted mine. My last one was #50. I have serious cataracts and pressure problems in the eye that has receive almost 40 of them. I'm having surgery for that soon. My doctor told me today that one of the reasons that the dry in that, my "good" eye, is progressing so fast is the injections. First I'd heard of that. I wish I had insisted on fewer. Of course, after 5 years I just stopped leaking for the first time so perhaps I'm between a rock and a hard spot as my grandmother would say.

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My injections weren't stopped after all. For the time being I am having two more, now at 2 months intervals bringng the total to 10 in 18 months and then we have to see what happens. I have had a 5 months break in the past which was heaven.

I too have cataracts. The one in my "good eye" with dry AMD is worse than the one iin the treated eye with wet AMD so that the vision in my good eye is almost as bad as. It seems I have to wait another year before the cataract is removed. I have not been told how the dry AMD has progressed, only that it still alright, which can mean anything. I have heard that when one eye turns wet very often the dry progresses faster.

Of course, the condition is an ongoing thing. It all depends on the underlying eye conditions how many injections we need to keep the eye stable. It is still better than the alternative.

Good luck with your surgery

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