Eyeball injections. What a lark.

[Eddy Edson]

So I've had early DME in my left eye. With today's visit to ophthalmologist, the edema as such hadn't progresed but he saw signs of exudates, which prompted him to immediately whisk me into the eyeball-injection chair, clamp my eye open & spike Eyelea right into my eyeball.

Because it's winter here & bad things happen in winter I was half expecting this & no doubt all is for the best. It's just a bit depressing that maintaining excellent control over all the risk factors - BG, BP, lipids, weight, impure thoughts etc etc - isn't necessarily enough to prevent it, once you're on the DME railroad.

OK, done whining now 🙂

 

[Rob Oldfield]

I had that particular bit of fun and games and few years back as well. Do they have you lined up for a series of injections now?

 

[Eddy Edson]

I had that particular bit of fun and games and few years back as well. Do they have you lined up for a series of injections now?

Yeah, I have two more lined up at 4 week intervals, to start with, as the initial "loading". Then assess next steps. Seems like the normal thing?

 

[Rob Oldfield]

Just checked back and I see it was 2016 that mine kicked off - https://forum.diabetes.org.uk/boards/threads/eylea.63615/

I was on an initial run of 6 back then, but aware that it was quite a new treatment so obviously they might have refined the process. I've not had any more eye problems since my course finished so hopefully you'll get the same positive result.

 

[Eddy Edson]

Just checked back and I see it was 2016 that mine kicked off - https://forum.diabetes.org.uk/boards/threads/eylea.63615/

I was on an initial run of 6 back then, but aware that it was quite a new treatment so obviously they might have refined the process. I've not had any more eye problems since my course finished so hopefully you'll get the same positive result.

Thanks for that - glad & encouraged that it worked so well for you!

 

[Stuvart]

Whats a dme? Please thats a new one for me.

 

[Eddy Edson]

Whats a dme? Please thats a new one for me.

"Diabetic macular edema". That's in American, I guess - should be "DMO" = "diabetic macular oedema" for the UK/Oz.

 

[Eddy Edson]

We get used to things so easily. Double booked for a meeting because I'd mis-calendarised my routine 4 weekly EYEBALL INJECTION appointment.

Anyway the treatment seems to going OK - 2 injections and subjectively noticeable improvement on the old Amsler grid. (But thickness was improving even before I started the injections & I have a niggling suspicion that the ophtho just likes sticking needles in people's eyeballs ...)

 

[everydayupsanddowns]

Glad the injections are working out @Eddy Edson - long may the improvements continue 🙂

Sorry about the calendar clash.

 

[Eddy Edson]

So I've had three Eylea shots now, which my ophtho regards as the initial loading dose. It's just into week 9 of the treatment; review at week 12 to plot the next stage.

According to the ophtho's Cirrus OCT device, my problem eye's CST thickness has gone from about 400 microns to about 350 over the 8 weeks, which he says is good progress. He wants to see it down at 300, which makes sense, given that the diagnostic threshold with the Cirrus is 305 microns, for men.

Wondering how many more eyebll shots I'm likely to need, I found this fresh study examinging exactly that question: https://www.ophthalmologyretina.org/article/S2468-6530(22)00341-4/fulltext

(Aflibercept = Eylea)

Amongst other things, looking at probability of full resolution in terms of CST thickness & time to achieve it.

The CST values aren't completely apples-vs-apples because the study is based on patient records which mostly didn't record the type of device, and CST measures vary between devices. So for "resolution" they set the threshold at 290 microns, which is the low end of the thresholds for the common devices, equal to the female level for the Cirrus. This might have some marginal effect but not worth worrying about.

One of the findings is that time to resolution on average partially depends on baseline CST thickness, I suppose not really surprising. My ~400 micron starting point is in their "least thick" tier T1, for which the median time to resolution is about 20 weeks, say 5 shots worth; and the probability of full resolution is about 80%.


Anyway, useful for me in terms of giving some shape to expectations and maybe others might find the same.

Maybe surprisingly, HbA1c doesn't seem to be a factor in CST thickness resolution:


The lowest HbA1c tier had the longest time to 50% resolution etc, but I don't think the results are statistically significant.

Should add that Aylea and its competitors seem like pretty amazing treatments. Despite being EYEBALL INJECTIONS they're not very invasive - 5 minutes in the eyeyball injection chair & then off you go, all completely normal except maybe for a few floaters. And evidently they are really effective.

Compare this to the nasty invasive, damaging and less effective old laser treatments ...




(Study was funded by Regeneron, the maker of Eylea, and they were involved in execution, but I don't think that's a big deal for these purposes.)

 

[Eddy Edson]

So I've had three Eylea shots now, which my ophtho regards as the initial loading dose. It's just into week 9 of the treatment; review at week 12 to plot the next stage.

According to the ophtho's Cirrus OCT device, my problem eye's CST thickness has gone from about 400 microns to about 350 over the 8 weeks, which he says is good progress. He wants to see it down at 300, which makes sense, given that the diagnostic threshold with the Cirrus is 305 microns, for men.

Wondering how many more eyebll shots I'm likely to need, I found this fresh study examinging exactly that question: https://www.ophthalmologyretina.org/article/S2468-6530(22)00341-4/fulltext

(Aflibercept = Eylea)

Amongst other things, looking at probability of full resolution in terms of CST thickness & time to achieve it.

The CST values aren't completely apples-vs-apples because the study is based on patient records which mostly didn't record the type of device, and CST measures vary between devices. So for "resolution" they set the threshold at 290 microns, which is the low end of the thresholds for the common devices, equal to the female level for the Cirrus. This might have some marginal effect but not worth worrying about.

One of the findings is that time to resolution on average partially depends on baseline CST thickness, I suppose not really surprising. My ~400 micron starting point is in their "least thick" tier T1, for which the median time to resolution is about 20 weeks, say 5 shots worth; and the probability of full resolution is about 80%.

View attachment 21946
Anyway, useful for me in terms of giving some shape to expectations and maybe others might find the same.

Maybe surprisingly, HbA1c doesn't seem to be a factor in CST thickness resolution:

View attachment 21947
The lowest HbA1c tier had the longest time to 50% resolution etc, but I don't think the results are statistically significant.

Should add that Aylea and its competitors seem like pretty amazing treatments. Despite being EYEBALL INJECTIONS they're not very invasive - 5 minutes in the eyeyball injection chair & then off you go, all completely normal except maybe for a few floaters. And evidently they are really effective.

Compare this to the nasty invasive, damaging and less effective old laser treatments ...

View attachment 21948


(Study was funded by Regeneron, the maker of Eylea, and they were involved in execution, but I don't think that's a big deal for these purposes.)

Had my fifth shot today. Thickness down to 317 microns from about 350 after the fourth shot, so I think a good chance that this fifth shot will get me down under 300 & so pretty much cured I suppose.

As noted above, median number of shots for somebody in my situation is about five, so looking nicely consistent.

Again, it's a pretty amazing treatment!

 

[Northerner]

Had my fifth shot today. Thickness down to 317 microns from about 350 after the fourth shot, so I think a good chance that this fifth shot will get me down under 300 & so pretty much cured I suppose.

As noted above, median number of shots for somebody in my situation is about five, so looking nicely consistent.

Again, it's a pretty amazing treatment!

Mine has been around 345-355 since 2013 - still no injections yet, was told the tipping point is 400. Sometimes I'm up a bit, sometimes down. I'm supposed to have 4-monthlky checks, but that seems to have disappeared with the pandemic, they seem to be checking my glaucoma more often, and that only 6-monthly. When I asked they said they had concluded I was 'stable'. It does affect my vision - I have a little kink in the vision of my left eye, especially obvious when looking at the Amsler grid. Like you, I have always had good control, just a little bit of BR until this appeared Luck of the draw! Hope yours settles down to that magic number 🙂
It's encouraging for me to hear about other's experiences with the injections - gives me a bit more courage, so thanks for detailing yours 🙂

 

[Eddy Edson]

Mine has been around 345-355 since 2013 - still no injections yet, was told the tipping point is 400. Sometimes I'm up a bit, sometimes down. I'm supposed to have 4-monthlky checks, but that seems to have disappeared with the pandemic, they seem to be checking my glaucoma more often, and that only 6-monthly. When I asked they said they had concluded I was 'stable'. It does affect my vision - I have a little kink in the vision of my left eye, especially obvious when looking at the Amsler grid. Like you, I have always had good control, just a little bit of BR until this appeared Luck of the draw! Hope yours settles down to that magic number 🙂
It's encouraging for me to hear about other's experiences with the injections - gives me a bit more courage, so thanks for detailing yours 🙂

Despite being EYEBALL INJECTIONS, they're really not a big deal. Five minutes in the chair with a Clockwork Orange thing keeping the eye open, swabbed with disinfectant and anesthetic, then the spike which feels almost like nothing. Afterwards it's less of a hassle than dilating eyedrops, just a bit scratchy for maybe a day, but no effect on vision.

 

[everydayupsanddowns]

Glad to hear it’s been so successful for you @Eddy Edson .

My mum is just about to be signed off after a course of eye injections over the past few years.

 

[Rob Oldfield]

Despite being EYEBALL INJECTIONS, they're really not a big deal. Five minutes in the chair with a Clockwork Orange thing keeping the eye open, swabbed with disinfectant and anesthetic, then the spike which feels almost like nothing. Afterwards it's less of a hassle than dilating eyedrops, just a bit scratchy for maybe a day, but no effect on vision.

One other thing I remember from when I had them done was other people with appointments getting turned away as their sugar level was too high. Are they still warning about that?

 

[Eddy Edson]

One other thing I remember from when I had them done was other people with appointments getting turned away as their sugar level was too high. Are they still warning about that?

Don't recall that being mentioned.

 

[Eddy Edson]

So down to 302 microns two months after fifth shot versus 317 microns before, and versus 260 microns before the edema developed.

300 microns is roughly diagnostic for DME but the usual protocol would be just observation at my current levels, unless there were complicating factors like exudates close to fovea etc.

On the other hand, if you're already on a Eylea etc program, the usual protocol would be to keep going while improvements continue.

On the other other hand, with diminishing returns like I'm experiencing, it becomes a jugement/preference call, balancing modest improvement prospects against the various small risks from injections.

For me the main consideration is visual acuity outlook. My bad eye has improved to about 5/6, one line worse than my good eye. Continuing with the Eylea injections may or may not see further improvement in that: the correlation between changes in macular thickness and VA is certainly not 100%.

Given that context, my ophtho left the decision for a 6th shot up to me, but said on balance he'd recommend doing it. Won't get the eye back to 260 microns; should get it down into the 290's; on the whole good to continue clearing up the fluid cysts; maybe get some improvement in VA. No problems with the first 5 shots so probably very little risk with a 6th.

So I did it. See in another couple of months what impact it's had.

 

[everydayupsanddowns]

So I did it. See in another couple of months what impact it's had.

Sounds like a good call Eddy. Hope it works out well for you.

 

[Eddy Edson]

So just to wrap this up: no change in thickness after sixth shot; still at 302 microns, really indistinguishable from the 300 micron diagnostic threshhold. So we're calling this resolved for the moment, keeping to a two monthly observation cycle for a while. All good.