Blocked vein

[Whitegoose]

Good morning all, I have moved to a new area and my new hospital is really excellent. However my 1st consultation after scans I saw my new consultant, I had fluid at the back of eye I have had neovascular AMD for 5 years, he also said I had a blocked vein. He asked if my previous hospital had told me, which they had not mentioned. Anyway he changed me to Vabysmo from Eylea because apparently he said had stopped working. I had to have an injection straight away because of the fluid. Does anyone know why a blocked blood vein needs monitoring. I forgot to ask the consultant.

[tallyho]

hi there

Ok so my understanding of a blocked vein would be ‘ ischemia’

I too moved from Eylea to Faricimab and as it is a thicker drug it just caused more oedema and after 4 injections ( known as the loading dose) we switched back to Eylea.

I have DMO with ischemia not AMD so this may not be the same for you but just letting you know of my experience.

The amount of fluid I have had now gone back to the 500’s whereas Faricimab took it well into the 600’s. If it is ischemia and they know that Faricimab is thicker I would like to know their reasoning for the switch.

You would need more monitoring because a blockage would mean that the drug would not be getting through as well as a non blocked vein would, like in my case.

These are my thoughts I am not a HCP but have picked up a lot of knowledge over the years.

[tallyho in reply to tallyho]

I was also on the NICE Technology appraisal committee for this drug so I was able to read up about it and we did decide it could be used. It does have another antigen within it so it is a novel drug which has been seen to have an advantage but I am not sure for those with ischemia whether that it really is an advantage

[Whitegoose in reply to tallyho]

Hi Tallyho, thank you for replying, I have moved hospitals, and it was my lst appointment with the new consultant. Apparently I had quite a lot of fluid at the back of my eye. He said Eyelea my previous Anti-Veg had stopped working, and changed me to Farisimab and also o said I had a blocked vein and he would keep an eye (pardon the pun) on it. I also was given an immediate injection. My last Eylea injection was on the 12th December at previous hospital. My next appointment is in 8 weeks. I have been worrying about this blocked vein since.

[tallyho in reply to Whitegoose]

Hi there

I was also told Eylea had stopped working I had been on the Eylea monthly since 2016.

It will be Interesting to see how you respond. I was able to keep an eye on how things were progressing by asking how many microns of fluid were at the fovea. After my fourth injections so after 4 months I thought he would say let’s stop all treatment but instead he said let’s go back to Eylea and this has bought the fluid down that occurred while on Faricimab.

You do have a different condition than me so you may well respond more positively. I really hope so.

[Whitegoose in reply to tallyho]

Sorry for the late reply, I do have neo vascular AMD which I think is the same as ischemia. I have had my 1st Vabysmo injection ,and I have had strange movements like water waves in the right side of my eye, it lasted about 1 hour and I have very sore & itchy eyes. This is worse since changing from Eylea. I do use strong eye drops. I don’t see the consultant until end of March. It will be the second visit to this hospital, we moved to a new area & new hospital. I was told by this consultant that Eylea had stopped working, hence the change to Vabysmo. I don’t know what to think.

[tallyho in reply to Whitegoose]

So I took was told Eylea had stopped working but Vabysmo did not suit me at all. If I may give a suggestion. Ask what your microns are at the fovea if you don’t already know them. Ask each time you go and keep an eye on them that will help you to know what is going on. We went back to Eylea after the leaking doses of Vabysmo.

[Whitegoose in reply to tallyho]

Hi Tallyho, are you in the Uk. I’ve never been told about how much fluid is at the back of the eye, information from consultants to patients in the Uk I personally find that the technical details are not mentioned. I’m just told if I need an injection. I have to ask what my eye pressure readings are every time, that’s from both hospitals. Perhaps I should be asking far more questions. Thankyou so much for your support.

[tallyho in reply to Whitegoose]

Hi there yes I am in the UK. You should be able to ask and get the result. If I sent a photo of an OCT scan showing the numbers would you be able to see it so I can explain a bit more?

[Whitegoose in reply to tallyho]

Hello Tallyho, yes I can use my magnifying glass. In fact I have spoken to the receptionist at eye dept.

this afternoon at 3pm, Then a nurse rang me back I went through my symptom's once again, she said she would talk to a consultant and ring me back. It’s after 6pm and no call back. I will leave it until tomorrow and go down to the eye department myself and sort it out. . I know my previous hospital would have told me to come immediately. I would like to understand the numbers and would appreciate your time.p explaining the scan you offered.

[tallyho in reply to Whitegoose]

Yes of course I will show you my last scan. I have DMO ( Diabetic macular oedema) but it’s similar to AMD for example. So the scan is made up of 3 circles and this is related to the macular. The fovea is the most important part of the macular. The middle circle which is the smallest circle is the most important of the 3. All this scan should be green. I have very little green left. Mostly it’s white which means the fluid is over 600 microns. It’s the smallest circle number that is most useful. On my last scan my microns were 688 - that is a lot of fluid. So do ask them what the middle number is and keep an eye on whether this goes up or down. Generally an OCT will show 3 pictures, the previous month at the top, the present month in the middle and the difference between the 2 at the bottom m. So my microns had gone up by 131 in 4 weeks between January and February.

[Whitegoose in reply to tallyho]

I can’t actually see the scan, but understand the information you have given me. I shall certainly be asking these questions. Thank you.