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.
Had my eye injections last week and it was the most traumatic procedure! As I have mentioned before sometimes I can feel the injections because the anasthetic doesnt fully work due to the inflammation.
This time the pain relief didnt work at all. The doctor stuck the needle in my eye and I nearly jumped off the bed, I was begging him to stop it was so intensly painful. He was holding my head down so that I couldn’t move becuase I was in so much pain I was trying to move away from him, by this time I’m crying. Not just grizzling but full on proper crying and I couldn’t stop. The doctor felt terrible but not as half as bad as I felt! I was so freaked out by it I cried all the way home in the car becuase I know I have to go through it again in 2 weeks and i’m really scared that its going to happen again. I don’t think I could do that again.
I also got an injection just under the eye into the eye socket area and now I have a lovely shiner!
It sucks to have my eyes I really don’t want these injections but without them my vision will deteriorate and it’s bad enough already. I can’t think about the next treatment or I will have anxiety for the next week. I must have been a right bitch in a previous life to have to go through this now! Maybe the next life will be better and I will be healthy, wealthy and gorgeous LOL
I really like this quote. I am going for my eye injections today and will be in a lot of pain for the next few days. This quote reminds me to stay in the present and remember that the pain will pass. I can get through it if i take it one moment at a time.
Haven’t posted much lately as my eyes have been so sick. I am having terrible vision problems, pain and headaches.
I have 3 severe eye problems, keratocous, scleritis and corneal neovascularisation. The blood vessels that are growing into my corneas are large and deep and go almost into the middle. This in itself is affecting my vision but i have the added trouble in the left eye of the blood vessels leaking blood and therefore causing hazyness as the cornea is swollen. I have pretty much no vision at all in the left eye at the moment.
Every fortnight I have injections of Avastin into my eyes. The left eye is fine, no trouble at all, but the right eye with the scleritis is so painful for 3 or 4 days after the injections. Aparantly the pain is caused by scar tissue and inflammation. Every second week is a write off and a nightmare.
I need corneal transplants in both eyes to restore my vision but whilst the blood vessels and scleritis are active I cant have it done. In my doctors words, it would be a disaster as there would be a 95% chance the new corneas would be rejected.
My doctor is trying so hard to fix my eyes but there is something going on with my body thats causing this and they cant figure it out. I really am a medical mystery as I have had pretty much every test possible and they still cant find a cause.
Guess it could be worse but thats no consolation when i am struggling to see and live a normal life.
Good news is I am managing to stay mentally well, no sign of the black dog knocking on my door
Have had a terrible eye week! To cut a long story short last week I saw a specialist at the Royal Brisbane Hospital, she felt that my scleritis had been resolved with the azathioprine and rituximab and that it had morphed into something else. There were 6 doctors in the room all taking turns in looking at my eyes and discussing me as though I wasnt in the room (dont you hate that!). As you can see above my eyes are not looking the best!
Anyway on the back of that visit I saw my eye doc on Monday, he did scans, blood tests, corneal scrapings and eye biopsies in the hope that we may finally get a diagnosis. I was really sore for a couple of days after the biopsy and my vision clouded up in that eye, I assumed it was inflammation from the biopsy. As my other eye is also cloudy I am pretty much blind at this point.
Josh my eye doctor called me back in yesterday. They hadn’t got the biopsy results back yet but the bloods were back and although they dont yet have a diagnosis they have ruled a lot of things out. The corneal scraping shows that I have a bacterial keratitis so I am on antibiotics 6 times a day and steroids 4 times a day. I am still pretty much blind at this point so my partner had to take me to the hospital.
The cloudy vision is due to inflammation from the corneal neovascularisation – the steroids are for this, I also had an avastin injection in each eye. This is really worrying me becuase at the beginning of the week my vision was clear in the right eye and overnight it went practically blind. I have had to take the week off of work as I cant drive or see computer screens or paper, anything with a white background is a blur. I can only write this becuase I changed the settings in my tablet to negative colours so the screen is black with white writing.
My vision is a little less cloudy today. It has been so boring, I cant read or watch tv, I have just been lazing around trying to get better. I did manage to get a shepherds pie in the oven for dinner, hopefully it will taste ok becuase I couldnt really see what I was making!
Back to the eye doc next Tuesday, I am hoping for a big improvement before then.
Saw my eye doctor yesterday regarding the loss of vision in my left eye. Cant see a thing through it, its just a big white blur of nothingness.
The corneal neovascularisation has increased, the blood vessels growing into my cornea are quite big and go in deep. The cornea shouldnt have blood vessels as it gains its oxygen supply from the atmosphere. Its these vessels that are causing the vision loss, they are growing into the clear window and making it not clear anymore.
So the bottom line is I need a corneal transplant. The bad news is I cant have one whilst my scleritis is active as it greatly increases the chance of rejection. My scleritis has been active for 15 months so im not too convinced we are going to get it under control anytime soon. I’m now on : 150mg Azathioprine, 5mg Prednisone, Rituximab infusion and Predforte drops 4 times daily.
My doctor took a lot of detailed photos of my eyes and he is going to get a treatment plan off of a highly regarded uveitis/scleritis expert. I also had an Avastin injection in each eye to try to stop the blood vessel progression. We are doing all we can for now, I just hope the scleritis clears up soon so I can have my surgery. I just want to be able to see, is that too much to ask!