Time between appointments: Hi All just... - Macular Society

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Time between appointments

Annsandra13
Annsandra13

Hi All just wondered if anyone is experiencing eyesight deteriorating due to the longer intervals between appointments.

My clinic has a policy of a 8 week appointment schedule, I am finding my eyesight is struggling at 6 weeks, generally my appointments have been monthly and prior to Covid occasionally to 6 weeks.

But as we all know the condition can change at anytime, I am wondering if the change. In eyesight would be seen as an emergency in the. Macular clinic, or do the injections recover the deterioration lost?

Hoping our community are staying well and safe

Love to all

Ann

20 Replies
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I started out at 4 weeks and they tried jumping me up to 6-7 weeks my eyesight was not ready so they let me stay at 4 weeks for almost a year then they were so painful I started pushing them out and swelling stayed down but my eyesight has suffered so now I go every 8 weeks but 4 weeks was the best good luck to you

Hi Thom3patty,

Sorry to hear that you ha such pain, my consultant sai the same my eye hs ha too many injections, also dry eye can be the cause of pain, so wonder if you are using eye drops daily, It is helping me an essential to put them in before bEd.

I agree 4 weeks is the best outcome.

Take care and good luck

Love Ann xx

Thank you for your reply I do use eye drops but usually in morning unless eyes r really dry I will try switching to before bed to c if that helps also morning of a shot day I put drops in right up until I go back for injection

Yes do try it as I have found my eyes are far better when I wake, I was given a cram too but not liking that very much. Really hopes it helps.

Love Ann x

Yes, my wetAMD eye will get worse if I go more than 6 weeks for my Eylea injection. I ask for 5 weeks so if my retina doc has a change in her schedule, I can get by with 6 weeks. In almost 4 years, my wetAMD eye has not lost its central vision, but it does has some distortion & blurriness.

When I got wetAMD in one eye, I didn't want the other to get it also. I got some info and went on AREDS2 eye vits & a daily lunchtime smoothie of a red bell pepper, baby kale, frozen wild blueberries all in a thick veggie juice drink. So far, I have not lost the good eye to wetAMD.

Let's say that my good eye is a 10 and my bad eye is an 8. You'd think both eyes together would be a 9. However, the good eye over-compensates for the bad eye giving me a total vision of 9.5

Annsandra13
Annsandra13 in reply to kevinaki

Thanks for posting kevinaki,

It is such a constant worry about hoping the good eye stays good! It’s amazing how the sight between both eyes can compensate for loss in one!

I starte off with my left eye being the gOld one as my right eye had the bleed, then Endophthalmitis, thankfully I regained a level of sight but March my left eye deteriorated and it’s now the right eye carrying the left!

Like you I am having all the good stuff but may try doing your smoothy!

As others point out we are all have our own variations of the disease, who would have thought before we would eagerly awaiting these injections as we do!

Stay well and wishing you all the very best.

Kind regards

Ann x

kevinaki
kevinaki in reply to Annsandra13

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My loading dose for Eyle was 4 weekly and then I was told after that it is 8 weekly

Hi Koalajane,

Thank you for your post so nkind of you.

I’ve been on Eyelea for 18months an after losing dose went 4 to 6 and then 8 weeks,

Of course with Covid it is different Time between sometimes no scans which I believe are very important,

Let’s hope the nw Beavu will give us a goo outcome and more time between.

Wishing you all the best

Love Ann x

Eylea - if that is what you receive is made up of molecules that will last longer the a that of lucentis and avastin which is why it should last more than 8 weeks. However for some that is not the case ( at least not in mine) I have had Eylea every month for 4 years now and before that 5 years of avastin and lucentis. We tried a longer interval for Eylea but for me that clearly did not work and because I only have central vision in one eye now I do have injections every weeks of Eylea, I think it should be done on a case by case Situation. Mine should be every 8 weeks but I get it every 4 and have done so now for just under 4 years. I have DMO not AMD which might be the reason.

Annsandra13
Annsandra13 in reply to tallyho

Hi Tallyho, thank you for your reply it was so helpful, yu have been having treatment fr a long time Bless you, it is such a shame it has t be every 4 weeks as it is Quite restricting for you, i too feel the central vision has changed .

I tried Avastin and they said that had stopped working and have been n Eyelea for over a year now, I wonder if it’s worth trying Lucentis?.

Hopefully the new Beovu Anti Vegf injection will give us longer between injections, it seems t have come out well in trials.!

Wishing you all the best

Love Ann x

I find my eyesight has deteriorated since I was changed from five weeks to eight weeks when the Covid invasion started - I'd had problems with leaking for the few injections prior but the five weeks was changed to wait eight weeks twice in spite of me trying to get the first delay brought forward. The last couple of appointments have been six weeks but my eyesight has not returned to what it was before the increase to eight weeks. I can actually see the damage in my eye when in a dark room with my eyes closed, I open them and see this round shape fuzzy at the edges which is now much bigger than it ever was.

Hi Springcross, thank you for responding, I’m sorry to hear of your deterioration too, Covid has a lot to answer for!

It was interesting to see that the clinic wouldn’t bring your appointment forward so they obviously don’t seem t think it’s crucial which is so wrong.

Yes I have noticed more problems with the dark more, I find it difficult to focus on some things and think I see some things that appear strange until I actually can see what it is. Sometimes quite funny!

I hope you are keeping I and staying as positive as possible.

Sending love

Ann

Yes, when I rang initially to try to bring my appointment forward, I told them it was now worse than when diagnosed two years previous and that I had wavy lines and my peripheral vision too was affected but it didn't make difference. Of course, they weren't doing OCT scans for months then so both of the eight week appointments were unscanned. When they did eventually start scanning, guess what they found - no prizes for the correct guess. What really upsets me is that after the last two injections before Covid (they were four weekly ones), my eye was the best it had been in two years, it was almost normal - I didn't have any noticeable central vision loss and I was over the moon.

I am having more problems in the dark too, more often than not I can't make out the time on the clock which has a large display. Maybe as you say the Beovu may be better when it eventually arrives. Good luck to you. xx

Hi, I am on Eylea for WMD in my right eye. I have been on it for 3 1/2 years. I am in the USA & before getting the shot, I get both a vision test & a scan at each visit. After the initial load dose every 4 weeks my Retina Specialist went to 5 weeks. After 6 months at 5 weeks, the Dr. went to 6 weeks. After 4 shots at that interval, he went to 7 weeks. After 3 shots at that interval he went to 8 weeks. At 8 weeks he saw no improvement but no deterioration, so he wanted to try 9 weeks. At 9 weeks there was massive deterioration of the fluid/bleed & vision back to how bad it was when I first started the shots.

He immediately put me back to 5 weeks for 4 shots & my vision & the fluid/bleed stoppage returned to the best it was when I was getting the shots at 5 or 6 weeks. So he said, Let's try to extend the interval again. So we went to 6 weeks, then 7 weeks, then at 8 weeks again no deterioration, but no improvement, so we went to 9 weeks and again there was massive deterioration at the 9 week interval so we went back to 5 weeks for 2 shots.

After this failed 2nd attempt at 9 weeks, my Retina Specialist said to me that we would NEVER do that again, because if we kept trying to go past 8 weeks with the deterioration at 9 weeks, one of these times, the Eylea would not bring it back. Because of this danger, we settled on a 7 week interval with 8 weeks as the maximum if there should be a conflict where I could not get the shot at 7 weeks. He said that even though some people eventually end up going for a shot only every 3 or 4 or even 6 months, for me that was not ever going to happen. I have been at a 7 week interval for about a year with the fluid/bleed fully stopped & vision deterioration completely controlled.

But, at my last shot, 2 weeks ago, the scan showed the fluid/bleed had returned very slightly, so now I am at a 6 week interval for my next shot.

So to answer your concern, yes, an Eylea shot can improve your situation if you need to extend your interval , BUT, as my specialist warned, one of these times the Eylea may no longer return a deterioration from an extended interval back to being better. Since you actually can notice deterioration at 6 weeks, maybe you must insist on a shot every 6 weeks as the maximum interval. Talk to your Retina Specialist & tell him/her of your concerns & what you have noticed happening at 6 weeks. It sounds like your situation is similar to mine, but maybe you cannot go past 6 weeks, so maybe you should have a 5 week interval with 6 weeks as a maximum. Hopefully your Retina Specialist will listen to your concerns & your observations as to what is happening to your vision at 6 weeks.

A Side Note - more important than your vision loss at 6 weeks is if the fluid/bleed is also returning at 6 weeks. For me, my vision is best from 1 week after the shot until about 1 1/2 weeks before the next shot. There is some deterioration in my vision, for that last week or so before the shot, but the scan before the shot shows no fluid/bleed & that is what is most important. Some vision deterioration seems to be expected in the week or so prior to the next shot, but as long as there is no worsening of the fluid/bleed situation, a slight vision deterioration MAY be OK. That is why you must talk with your Retina Specialist about your situation & what you notice at 6 weeks.

Dear retired130,

Thank you so much for your very informative message, you have certainly been through a number of ordeals, our. AMD is such a complex and changing situation and I suppose some f us struggle more than others.

You information has given me good points to raise next Thursday.

I will say that I must not go beyond 6 weeks, I am already well known to the clinic as was unlucky to contract endophthalmitis aIn the clinic a. year ago, it took me 3 months of serious treatments and was lucky to get my eyesight back but the eye Isn’t the same and is always painful and sensitive to injections, to light and is now a dry eye too.

Liike everyone I will do anything to preserve my eyesight, it is so life changing too but I try and keep positive. And not let it define me to much.

I will keep researching and I am keen to know when the new anti Vegf Beovu will be available, I wondered if this is available in the US, it is apparently same cost as Eyelea but is more effective and can last 12 weeks after the 3 loading doses.?l

So thank you again for taking the time, lovely t have a message from across the pond

Sending my best wishes

Love Ann x

Hi Ann!

In my case, I had to go nearly a full YEAR between injections in my wet eye. I was worried because I was more than 5 years in treatments and was afraid I might lose what I gained.

Not so! I had some blood leakage in the wet eye but we were able to regain where I was after restarting my injections~

Tho remember this...everyone's is different and your outcome might be opposite of my own. However...have HOPE!

BTW, have you thought about adopting an anti-inflammatory diet? It helped me in ways I can hardly describe~!

Hang tight as we say on the west coast of the US 8-)

Hi Hollygg

how lovely for you to respond and so good to hear you had a good outcome in not having treatment for a year.

I’m interested in the anti- inflammatory diet? I eat really healthy really left green veg every day and blue berries .

S o great to have contact from west coast hope to you are keeping well with this awful pandemic we are all living through.?

Love the hang tight

Sending love and thanks

Ann x

Previous consultant kept me at 8 weeks for both eyes (sometimes longer with waiting lists) it kept fluid at same level never reducing...stopped left eye inj 18 mths ago due to scarring..along came another consultant who immediately put me on 4 weekly injections for 3 mths in right eye which kept it stable,then tried 5 weeks but fluid had already starting rising so back at 4 weekly for now......left eye peripheral sight now.....so fingers crossed for right eye......good luck x

Annsandra13
Annsandra13 in reply to JJnan

Thank you for your message, it really is seem we are all different, you have been very unfortunate with your left eye, so very important to stay on monthly on your right eye for sure.

I have the feeling I am losing my central vision too, it’s very different this time. So sending my best thoughts for a long an good outcome for your right eye.

Just hoping I will have a scan on Thursday as well as the injections.

Thanks again

Love Ann x

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