What is Maculopathy?

[tim2000s]

This is what maculopathy looks like. Spaces and fluid under the retina close to the macula (the centre of vision where the dip is). ‪Within a certain distance of the macula, retinopathy becomes maculopathy. As you can see, mine is pretty close. ‬ ‪

This can cause the tissue to thicken or swelling, which can cause sight distortion. That’s not occurring for me yet (as can be seen in the black and white photos). ‬ ‪

The orange photo is what a normal optician’s photo looks like. The green circle shows what can be seen on the surface. Not much really!‬ ‪

It can be treated with injections of Lucentis, Eylea or Avastin. I will be observed and if it gets worse, this is what I will be offered. In the meantime I must maintain tight glucose levels. ‬ ‪

This is why Diabetes Eye Screening is so important. Early detection saves sight. ‬#TalkAboutComplications #maculopathy #type1diabetes

 

[Jaylee]

Hi Tim,

Yep, that about sums it up...
How often are your screening appointments?

I've had the treatment. But still getting screened once a month with the "all clear." If they find anything? I will get walked through to the treatment lounge in the ward next door for a prep & jab..
Personally, I preferred the eylea to the Lucentis. The Eylea disperses quicker.

I agree. Tight BG managment helps.. But oddly the BG window they go by on the pre-procedure checks is something between 4.6 & 14.2Mmol?! (Which is very generous.)
I've never had any issue hovering around the 4.8 to 7.8 mark. But they did delay once when I rolled out a 4.2. (Lol, NHS devices read aprox 15% lower.) They will also check your BP too. Should you need the procedure.

The very best of luck buddy. Fingers crossed you don't need it.

 

[DunePlodder]

I was going to click "Like" but it doesn't seem appropriate. As you say Diabetes Eye Screening is so important. Here's hoping yours doesn't get any worse.

 

[Jaylee]

I was going to click "Like" but it doesn't seem appropriate. As you say Diabetes Eye Screening is so important. Here's hoping yours doesn't get any worse.

Hi,

There is no appropriate button to hit on this one. We all know about retinopathy.. & the other "usual suspects."

This "one" came "out of the blue" for me..
The treatment (I believe for this condition.) is only around 10to12 years old.? (I was told 2 years ago they didn't have this treament 10 years back. My reply, "10 years ago, I didn't need it.") It's not a "sticking plaster" good BG managment is paramount..

I can't knock the current treatment from my own experience.

 

[tim2000s]

It was a bit of a surprise if I'm honest. I'd had background retinopathy, and this popped up. The conversation I had with the Optometrist was that this is still effectively background retinopathy, but the proximity to the macula is the concern and so it becomes "Maculopathy" with significantly more observation.

In an NHS clinical trial, Eylea performed the best of the three drugs on offer for Macula Odoema (The swelling I described in my first post).

 

[Robinredbreast]

Yes diabetic eye screening is essential. My hospital eye appointment is on Thursday at 3pm, it was cancelled twice, first in April, unforeseen circumstances, so re-scheduled for July 2nd, but I couldn't attend as I was in hospital, so now September.
I have started a new job, had to get in touch with the Area manager of our area ( supervisor is on holiday, but I did inform her twice about the appointment) asked about changing my hours and she said, 'couldn't I change the appointment for another day, I said I couldn't as it's an afternoon clinic' so I am working Thursday morning now and she didn't even ask how I was doing in my new job !

 

[tim2000s]

Just to footnote this. Between 2000 & 2014, my average Hba1C was 7.1%, with a median of 7.2% and a max of 8.0%. After 2014, with Libre and D-Tech, it's been average 5.8%, median 5.8% and max 6.2%. Pre-2000, I have less data, but it looks to be around 7%.

I'd question whether variability is more important where the eyes are concerned.

Why publish these numbers? Well they show that the previous target hab1C level in the NHS doesn't avoid these things happening, and that there's more to the risk than just an Hba1C number. In fact, there's mounting evidence that it's the first 8 years of living with T1D that are the most important in keeping things at bay.

 

[Fruitella]

Hi Tim,

Yep, that about sums it up...
How often are your screening appointments?

I've had the treatment. But still getting screened once a month with the "all clear." If they find anything? I will get walked through to the treatment lounge in the ward next door for a prep & jab..
Personally, I preferred the eylea to the Lucentis. The Eylea disperses quicker.

I agree. Tight BG managment helps.. But oddly the BG window they go by on the pre-procedure checks is something between 4.6 & 14.2Mmol?! (Which is very generous.)
I've never had any issue hovering around the 4.8 to 7.8 mark. But they did delay once when I rolled out a 4.2. (Lol, NHS devices read aprox 15% lower.) They will also check your BP too. Should you need the procedure.

The very best of luck buddy. Fingers crossed you don't need it.

Hi, just curious. Do you have checks prior to the injection? I have Lucentis jabs but have never had any pre jab checks.

 

[novorapidboi26]

This is what I have.....fortunately I have been put back to once a year photographs as opposed to every three months at the opthalmology , which I am taking as very good news........but still need to keep it as tight as humanly possible....

@tim2000s , how did you get the images....?

 

[tim2000s]

This is what I have.....fortunately I have been put back to once a year photographs as opposed to every three months at the opthalmology , which I am taking as very good news........but still need to keep it as tight as humanly possible....

@tim2000s , how did you get the images....?

I just asked the Optometrist if I could take photos of my images so I could share them online to show what Maculopathy is. She was very happy for me to...

 

[Jaylee]

Hi, just curious. Do you have checks prior to the injection? I have Lucentis jabs but have never had any pre jab checks.

Hi, yep. Before every injection procedure they check BP & finger prick test BG.
I've sat waiting with type 2 patients. The same routine for all..

 

[BibaBee]

Hi, yep. Before every injection procedure they check BP & finger prick test BG.
I've sat waiting with type 2 patients. The same routine for all..

That's interesting. My husband (T2) has has three lots of injections (which are working wonders) and his BP and BG have never been tested. The first set were through a private hospital, last two through the NHS (Manchester Royal Eye Hospital) . A good job in his case, as he has severe white coat syndrome!

 

[Jaylee]

That's interesting. My husband (T2) has has three lots of injections (which are working wonders) and his BP and BG have never been tested. The first set were through a private hospital, last two through the NHS (Manchester Royal Eye Hospital) . A good job in his case, as he has severe white coat syndrome!

Thanks. This is getting interesting indeed.

I'm treated at the RUH eye unit in Bath. I get the same routine. A nurse checks I am who I am, (though they know me by this point.) asked if any change in meds.. (Which I always find funny.) Then the BG & BP. Then I sit & wait to be called for the jab while she runs the paperwork through..
The whole thing runs like "clockwork." Never a delay..

 

[PatsyB]

Oh lord I can not think of anything worse how brave you all are to go through all this I had measles in my eyes when i wa slittle and can not stand anything to do with my eyes

 

[BibaBee]

My husband had a very rapid and severe maculopathy (probably due to rapid drop in BG at diagnosis due to insulin), which meant he lost most of his vision almost overnight. Scary stuff indeed, so the injections were nothing in comparison.

 

[Koalajane]

My diabetes is well under control, I have been in remission for a year and having eye screening every 4 months. I suddenly have macular oedema and ophthalmologist was surprised and puzzled. She asked if I was anaemic or if my inflammation levels had gone up ( I have PMR) so having blood tests this week and starting the injections soon. Do they hurt a lot?

 

[Jaylee]

My diabetes is well under control, I have been in remission for a year and having eye screening every 4 months. I suddenly have macular oedema and ophthalmologist was surprised and puzzled. She asked if I was anaemic or if my inflammation levels had gone up ( I have PMR) so having blood tests this week and starting the injections soon. Do they hurt a lot?

Hi @Koalajane ,

There is a local anaesthetic in the form of eye drops used. Prior to the clean up around the eye area for the procedure.
You you should feel nothing.. Even after the drops have worn off, I've never had any issue. Apart from a little blurred vision a few hours after.

Don't drive. Take dark glasses & a peaked hat..

Hope this helps?

 

[Koalajane]

What is the peaked hat for?
Also a bit concerned as we have builders in so should I do anything to protect my eyes from the dust?

 

[ResistingResistanceUK]

Sorry to resurrect this! I had my eye screening the other week & I’ve received a letter about going to hospital for more tests. My blood sugars are under control but worried that RA (Rheumatoid Arthritis) is not helping issues here. Should I start another thread about this?

 

[Koalajane]

That's interesting. My husband (T2) has has three lots of injections (which are working wonders) and his BP and BG have never been tested. The first set were through a private hospital, last two through the NHS (Manchester Royal Eye Hospital) . A good job in his case, as he has severe white coat syndrome!

I don't have sugars or blood pressure checked before injection