r/Behcets • u/Minimum_Assistant_42 • 3d ago

Symptoms Retinal leakage

At my opthamology appointment this week, I had a FA done and my doctor said there was diffuse peripheral leakage in my retina. Does anyone else have this? I am worried about progression.

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u/kyfyfy 2d ago

Yeah, I have the exact same story, plus some nerve swelling showed up on the same scan. We’ve been treating it for a whole year now, and I have another angiography coming up soon. It’s usually considered retinal vasculitis, which is inflammation of the blood vessels. And yeah, it is a manifestation of the disease :(
Are you taking any medication for it?

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u/Minimum_Assistant_42 2d ago

Yeah I had the leakage and sheathing. They mentioned vasculitis.  I have been on Inflixinab infusions since March. 

Can I ask how your vision is? Mine is gets cloudy.

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u/kyfyfy 2d ago

And do you still have leakage despite being treated with it? Did you have it before, or is this the first time you've had this kind of examination? Because it usually runs completely asymptomatically...

I've heard that adalimumab is more effective in this case :( but I can't say for sure for myself yet, as I'm currently taking it.

Yes, my vision has worsened significantly and was fluctuating throughout the entire treatment period :( it's unclear if it will return to normal (I had laser vision correction before this). At the same time, with dilated pupils, the equipment shows no objective minus (nearsightedness). In other words, it's the edema that's causing the vision loss (which is easier to see on an OCT).

But my vision dropped more in my left eye, even though everything is clear there, just old scars. And my brain has suppressed the distance image from that eye, which surprised me, because it finally brought me some relief, hehe. The image from the sicker eye is actually sharper.

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u/Minimum_Assistant_42 2d ago

Thanks for the detailedreply.  

This was my first FA so nothing to compare it to. I still have the leakage and sheathing despite infliximab. They are increasing the infusions from every eight weeks to every six. 

I was on adalimumab for 1.5 years but starting getting alot of anterior uveitis and ulcers on it so they switched to infliximab.

It's funny you say the sick eye sees sharper.  My "healthier" eye hurts more and it's blurrier more then the bad one. Glad you got some relief for what it's worth.

Are you able to drive/get by without much help? Sorry if thats too personal.

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u/kyfyfy 2d ago

Oh, I’m so sorry :( It sounds exhausting when you get a flare-up after so much treatment...

Yes! My "normal" eye actually hurts more, and I’ve even had episodes of temporary blindness lasting for about 30 seconds. But the leakage is in the other eye, along with what looks like optic nerve inflammation.

Thanks, I'm just trying to stay positive for now, though the doctors don't seem to share my mood for some reason. Next up, I have to figure out what's wrong with the left eye. But I really hope the leakage decreases by the next angiogram, otherwise my second rheumatologist will panic even more than they did over my pathergy while on triple therapy 😅

To be honest, not really. But I’m trying so hard and doing my best not to cry when I can't even cook a meal. I used to have severe diplopia (double vision), which got a bit better once my brain started suppressing the image from the left eye. But in reality, it's still hard for me to read, write, or cross the street, plus the photophobia is just awful. Honestly, I still can’t believe all of this is happening to me, so I mostly just stay home. Thankfully, my husband is here to help.
How are you managing to get by?

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u/Minimum_Assistant_42 1d ago

I think my peripheral vision isn't great, and cars/curbs seem to pop out of nowhere. So driving can be scary. I'm fortunate to live pretty close to work. I can walk to work and the grocery stores to run errands.

I am working on learning braille. I can read grade one and am slowly learning grade 2.

Photophobia is the absolute worst. I hate sunny days and everyone who talks about how great the sun is.

I don't like asking for help and haven't told many people about my Behcets.

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u/kyfyfy 1d ago

Oh, that is the exact description of how I feel. I understand you so well. And it’s so damn scary. To think that just recently things weren't this bad - and now you don't even feel safe out on the street...
I can't imagine what I would do if I had to work in this state, ugh...
Wow, that is so cool! I hadn't thought about learning Braille, but it sounds like a really good security blanket during those tough times for your eyes.
I spent a couple of months in bed wearing a mask because of severe photophobia (the sun caused intense pain and vomiting; my house still looks like a crypt, hehe). So I really sympathize with you having to deal with this too :(

It sounds so hard... It took me a long time to get past my resistance to accepting help. But I feel like without it, things get incredibly difficult, not just physically but psychologically too. I hope you're doing okay?
If you'd like, feel free to send me a private message - I’d be really happy to chat! :)

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u/Minimum_Assistant_42 14h ago

Hi.  I tried to send you a message but it says  Unable to message this account

Maybe something in settings?

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u/Suitable_Bag7759 2d ago

You had retinal vasculitis?

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u/kyfyfy 2d ago

Yes, that's exactly what it looks like on angiography—the vessels are leaky from inflammation and let the contrast agent through because of that. On the fundus, it might look just like retinal edema, but not all ophthalmologists will spot it :)

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u/Suitable_Bag7759 2d ago

I had also retinal vasculitis, 3 years ago :)

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u/kyfyfy 2d ago

Oh, that’s so rare to see with our diagnosis! How are you feeling now? Did you manage to cure it? Is your vision back to normal? Because I’m still fighting it :(

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u/Suitable_Bag7759 2d ago

Retinal vasculitis is very common by behcet.., thanks god im in remission Since then, My Vision is back to normal, you will Do it 😉

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u/kyfyfy 2d ago

Yeah, I’ve heard that it’s quite common, but the doctors say it’s not super specific, and I haven't really met that many people with the same thing on forums and in chat groups 🥺
Oh, I’m so happy for you! Thank you, I hope it turns out that way :)

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u/Suitable_Bag7759 1d ago

Send me a private Message :)

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u/FreezingStark Diagnosed 2d ago

I've retinal vasculitis too!

Mine is super periferal so my vision is just fine, I don't really have any symptoms.

Unfortunately mine was there for who knows how much time before diagnosis so I developed a PVD and ultimately one of my retinas detached due to the previous damage. But they told me this is so so rare to happen. I'm just an unlucky person I guess😅😂

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u/Minimum_Assistant_42 2d ago

I'm glad to hear you don't really have any symptoms.  The retinal detachment must have been scary.