I have been on Cyclophosphamide now for about 3 months and it was going really well. Well about 3 weeks ago I had a scleritis flare which was really painful and gave me a week long migraine because all of the eye socket was also inflamed. I have had 2 orbital floor steroid injections over the last 3 weeks and now i’m sporting a lovely bruise under my right eye.
Anyway I digress, back to kerataconus news. My doctor said that I desperately need grafts in both eyes but particularly in the left and we have been working to get the left one as healthy as possible before surgery, i.e. getting rid of the scleritis and corneal neovascularisation as much as possible. If I have the graft with the blood vessels growing into it the transplant will most likely reject and be a disaster (my doctors words).
I saw him on Wednesday and he is now saying that the vision in that eye is so bad due to the blood vessels we may as well do the surgery soon as we have nothing to lose if it fails. I have no useful vision out of that eye now even with a lens in so I tend to agree with him. It will make the surgery a bit more complex as he will have to cauterise all of the blood vessels first. I don’t just have a few blood vessels I have loads and they are really deep and growing into the middle of the cornea.
I am seeing him again in 2 weeks for a review of the scleritis flare so I will try and pin him down to a timescale of when my surgery is likely to be then. They are thinking about increasing my chemo to try and stop the break through flares which may not be fun as I might get increased side effects. I am prepared to do whatever I need to fix my eyes though.
The pic is a corneal topo of my eye taken probably about 8 years ago, its the only topo I have. I reckon my eye has changed heaps since then I would love to see an updated one!
Well that’s it for now, I have surgery in my not too distant future which I am very excited about, It will be nice to have an eye with some vision in it as currently I am seeing through a white haze.
Finally for the first time in over 2 years I am pain free from scleritis (eye pain). That is amazing and down to the Cyclophosphamide I started taking about 4 weeks ago. The first week I felt terrible, really nauseas then I came good and felt great for a couple of weeks. I was thinking this is brilliant, then in week 4 I am getting light headed, dizziness and fatigue. It’s worth it not to have that awful horrendous eye pain!
Assuming my bloods are ok when I go back to the rheumatologist in 3 weeks I can move on and start thinking about my corneal transplants and where I need to be to be able to have my surgery. I have severe corneal neovascularisation, the vessels I have are big and deep and there are plenty of them. They are not ghost vessels either, they are still active and blood filled. I can’t have my surgery whilst they are active as the graft would reject. In my doctors words “it would be a disaster”. One positive thing, in my eye check-up last week my doctor felt like there were less vessels in the right eye and maybe the Cyclophosphamide has got rid of some already. I hope so that would be amazing.
I had two wishes, 1 was to get rid of the pain – check! and 2 was to be able to see properly. So I am halfway there! Point 2 is going to be harder to achieve, every time I see my eye doctor I’m like can I get my graft yet and always the answer is no. Hopefully one day soon I will get a yes. I am so desperate to improve my vision, I really struggle in particular at work reading my computer screen. Some days are really awful and I can hardly see a thing.
I know having a graft doesn’t automatically guarantee good vision but it’s surely got to be better than looking through a forest of blood vessels, even if I have to wear a lens on it I will be ecstatic.
Keeping my fingers crossed that next time I get a check up even more vessels have melted away.
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!).
I am now 11 months in to my journey with scleritis. I never in my wildest dreams thought for one second my eyes would still be flaring. I thought a few weeks on the meds and it would all be over.
Approximately 347 days later I still have severe eye pain, redness, photophobia and swelling around the eye, I always look like I have been punched in the face. I don’t want to look people in the eye when I am talking to them in case they think I have been bashed up. Some days are worse than others but it’s a constant no relief kind of pain of varying degrees. The pain of scleritis is intense and relentless and unfortunately chronic headaches come with the eye pain.
I have been admitted to hospital, been on steroids and chemotherapy drugs, had many eye injections and had loads of tests and they are no closer to finding a cause or a resolution. The next step up from the immunosuppressant chemo meds are biologics. Biological products often represent the cutting-edge of biomedical research and, may offer the most effective means to treat a variety of medical illnesses and conditions that presently have no other treatments available.
I am HLA-B27 positive which is a genetic thing that makes me predisposed to getting autoimmune diseases like scleritis. There may not be an underlying cause but my GP feels that there will be something there because whatever we throw at it doesn’t fix it. It also brings in to doubt my fibromyalia diagnosis ….. are these symptoms part of an underlying disease and not fibromyalgia at all? I think it probably is and they just haven’t figured it out yet. Wish they would hurry up and find something I am so over the pain every day, not to mention that my eyes look a mess.
Unfortunately I also have corneal neovascularization in the left eye, which means I have blood vessels growing into the cornea. The cornea is meant to be clear so the blood vessels are causing hazy vision almost like a cataract. This means that I have to wear my scleral lens in the right sore eye to be able to see (keratoconus has made my vision extremely bad 20/450). Not ideal to wear a lens in a sore eye but I have no choice I can’t afford to take 347 days off of work!
Fortunately throughout this journey my mental health has stayed pretty stable, could be a whole lot worse!
All I can do at the moment is continue with the painkillers (endone – oxycodone) and try and get through each day one at a time. I have a feeling that this journey is going to go on for a while yet.
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 ☺