Had my Rituximab infusion last week, one of the side effects is things like bleeding gums etc. Well I had a bleeding eye, twice! Crazy right.
It was so weird when my eye bled. It was like a white curtain came down over the eye for a couple of minutes and I couldn’t see a thing it was a total white fog. Then the bleeding happened and suddenly I could see again and everything was clear.
What I reckon is going on is that the blood vessels in my cornea are very fragile, and the rituximab has made them even more fragile and they are bleeding. I see my eye doctor shortly so I will mention it to him and ask his opinion.
Corneas are not meant to have blood vessels but I have severe corneal neovascularisation. I have large deep vessels growing into the cornea, caused by the inflammation from Scleritis. They are causing vision loss and I need a corneal transplant. Whilst the vessels are active, i.e. filled with blood I can’t have one because the graft would reject. In my doctors words it would be a disaster. So anyway we need the vessels to empty and stay that way for several months before we can consider the surgery. I have Avastin injections into the eye every two weeks to help with this.
Well the eye hasn’t bled for a few days so i’m thinking that whatever has happened is over. I have my next infusion in 3 weeks so I wonder if it will happen again then! Time will tell I guess.
Feeling blue today, I feel like I am getting nowhere with my eyes, they just seem to keep getting worse. Still have the opaque spot on my left cornea which I cant see out of at all.
Yesterday I saw a specialist in inflammatory eye diseases. When I got there, there were 7 people in the room, 5 of them doctors waiting to take a look. They all had their turn and then they huddled together talking about me like I wasnt even in the room. Chief doctor then left the room to make a call to my eye doctor.
Bottom line is she feels that the scleritis has cleared up but has no idea why I still have red painful eyes and a hazy cornea. She said im a medical mystery (I already knew that lol), and that my eye doctor needs to take a step back and start from the beginning looking at diseases other than scleritis. Perhaps a type of keratitis.
Just got a call from my eye doctor, he is speaking to an immunologist today and then wants to see me on Monday morning to run some blood tests etc. Hopefully something will show up that is treatable. I realy hope so, I know im a tough old bird but I dont know how much more of this I can take.
I just need to know whats wrong with me, I need a diagnosis so I can read up on it, get a grip on it and beat it.
I was messing around with my phone today and thought I would try to take a photo of my “blind” eye. I was quite successful, check it out. You can clearly see why Im not seeing anything out of that eye. The white area is inflammation caused by the corneal neovascularisation. My eye doctor said the blood vessels in the cornea are large and deep so what with that and the keratoconus my vision is pretty crappy right now.
The scleritis is looking a little better so hopefully I can have my transplant soon (I hope!).
My cloudy vision is really starting to get on my nerves now. The vision in the right eye is good, pretty clear and colours are crisp, but the left eye is hopeless. The nearest thing I can find to it is the photo above of vision with a cataract. Looking through a fog is really off putting and annoying, especially as one eye is normal so it feels really unbalanced. It’s making it a bit tricky to do my colouring in so thats a bit of a pain.
I had an avastin injection in the eye yesterday to try and stop the blood vessel growth that is causing the problem. Blood vessels are not meant to grow in the cornea but unfortunately they have in mine probably from the inflammation from the scleritis.
I asked my eye doctor if the vision would clear if they could stop the blood vessel growth and she said it might if we can get the vessels to shrink back, but it is unlikely that it will clear completely. Of course it could get worse and then the only alternative is a transplant as I would lose sight in that eye altogether. Great that’s all I need!
It makes work a bit difficult too, I have started using a magnifying glass to read some paperwork and I have moved my computer screen closer to my face, I am practically sitting on top of it now. I am managing though which is good.
Lets hope it doesn’t get any worse! Have a good day.
Corneas aren’t meant to have blood vessels growing in them, they are avascular which means they have no blood vessels and they absorb the oxygen they need from the atmosphere. The cornea is the clear window on the front of the eye that gives us clear vision.
Due to the inflammation of scleritis I have blood vessels growing into the cornea on my left eye. The vision is hazy like looking through a fog. Problems occur when the blood vessels keep growing and cover the clear portion of the cornea over the pupil, if this happens there can be serious consequences to vision: –
If they grow into the cornea enough they can cause irregularity to the cornea, which in turn will degrade the vision – I already have an irregular cornea due to Keratoconus so don’t want it to warp even more.
In severe cases the cornea will lose its clarity and with further vision degradation only a corneal transplant will clear the vision – don’t really want a transplant either!
I am currently on 5mg oral Prednisone, 25mg Methotrexate and Predforte eye drops. I see my eye doctor again next week for an Avastin injection into the eye to try and stop the vessel growth.
Having these constant eye problems are really starting to wear me down. I’m so fed up with the crap vision I’m getting, the pain and having to keep taking time off of work. I have had chronic scleritis since last November and not a day goes by that I’m not in pain, my eyes look like crap, all red and ugly looking and I’m over it! There I have had my tantrum think I will pop a couple of pain killers and go and have a cuppa!
As you can tell I’m struggling with it today. I am so lucky that my mental health has been fairly stable throughout this illness, I can’t imagine how horrible it would be if my bipolar was unstable at the same time as going through this. I will be fine, as usual I will slap myself around the face and tell myself to toughen up as it could be much worse.
Have a good weekend ☺