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.
For the past 6 weeks my eyes have been really good in terms of the scleritis. I have had a white eye and no pain, even my vision seemed to be a bit sharper. I was really hopeful that the Cyclophosphamide (Endoxan) was working so that I could concentrate on getting my vision better and my eyes ready for corneal transplants.
Yesterday afternoon I seemed to start a flare up, today my right eye is a little red and quite painful. I am freaking out and a bit gutted actually because I was really thinking that this was the medication for me and things would just get better and better. Today my vision is awful and I am really struggling.
I saw my eye doctor yesterday morning and he was pleased with my progress, then a couple of hours later I’m flaring, how is that for bad luck, it could have happened when I was at the eye doctor!
The Endoxan has been a bit of a bumpy road so far, the first couple of weeks I felt fabulous then I felt like absolute death for a couple of weeks as my blood pressure plummeted. I could hardly stand up without falling over. We got the BP sorted out and I started to come good again, until yesterday. Now I feel really worried that I am going to fail another treatment.
I have a swelling under the right eye and the doctor thinks that there may be a cyst in there caused by the regular orbital floor injections I have been having over the last year or so. It looks ugly like I always have a bruised eye. If it’s not a cyst it will probably be thickening of the tissue from the needles. I hope they can do something about it.
Luckily I am seeing my Rheumatologist tomorrow to see what my bloods are doing and to get some feedback on my progress. Hope I get some positive news, maybe I need a dose adjustment.
Wow we just had a snake in the office and all the girls were like OMG theres a snake, and i’m like what snake, where? just shows how bad my vision really is. That makes me really sad.
It’s been a while since my last post on here as I now have separate blogs for my hobbies. Thought I would do an eye update as they are still pretty crappy.
Saw my eye doctor and rheumatologist yesterday, had an orbital floor steroid injection in the right eye. Have a swollen and black eye appearing this morning but the scleritis pain is easing already so that’s really good.
The Rhumy noted that I have failed Rituximab. Azathioprine, prednisone and methotrexate (I’m still on the MTX but the sides are awful, I take it on Friday then the weekend is a write off). The next step is a cyclophosphamide infusion. This is worrying me a little because it much more hard core than anything else I have tried and you can lose your hair even at low doses so I don’t really know how I feel about that. I know that we have to try everything we can because nothing has worked so far and I am in chronic pain, some days the pain is so great I just lay there moaning to myself. Still it’s a big step taking such a strong chemo drug.
My vision is really variable as I have more than one problem – keratoconus, scleritis and severe corneal neovascularisation. Some days I can hardly see at all and other days my vision is pretty clear. At the moment I have not much vision at all in the left eye as the inflammation has made the cornea hazy. At my eye check yesterday I was just counting fingers, couldn’t read the letters even through the pin hole. This will clear pretty soon with the eye drops but it makes for such a hard life when you have to get up for work every morning.
I can’t even enjoy my colouring much at the moment the one thing that is keeping me sane right now is reading on my kindle, I adore reading and escaping into a good book. I can’t read normal books but on my kindle I can have a lovely big text and manage to read, even though I only get one sentence on a page and it gives my thumb a workout changing the page every 2 seconds lol
Sorry for any typos, can’t see too well at the moment!
If you are interested in my hobbies of adult colouring and reading you can catch me over here:
Thanks for reading and catch up soon!
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.
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 have terrible vision problems but love colouring. Its so difficult to enjoy something when you cant see. I came home from work to this beautifully thoughtful gift. I have no idea what they are called so I call them my colouring goggles lol. They have magnification and a bright light on them.
Colouring is now so much easier, I look like a dag in them but I love them, they were the best gift! Colouring was fun before, its even more fun now ☺