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
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.
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.
Scleritis has become a huge part of my life over the last 7 months; it has affected me on a daily basis, made me miserable and depressed, given me chronic pain and made me cry. So what is scleritis?
* Scleritis is a chronic and painful inflammation of the white of the eye.
* It is a serious eye disease which is often associated with underlying autoimmune disorders.
* Prompt diagnosis and treatment is essential in preventing permanent vision loss
I have tested positive for the HLA-B27 gene, this means that I am predisposed to getting auto-immune diseases. With bilateral (both eyes) scleritis there is generally an underlying cause. The fact that I have had it for so long without resolution also indicates that there is something else going on.
It makes me doubt my diagnosis of fibromyalgia too because my widespread body pain has practically gone since I started taking Methotrexate. I think next time I see my rheumatologist I am going to push him for a diagnosis. I really need to know what is going on. It’s a shame that the Metho has fixed my body but not my eyes.
I have noticed over the last couple of days that my left eye is hazy, almost like I am looking through a fog. This could be a complication of the scleritis but I am a bit concerned it is a result of the Avastin injection that I had a few weeks ago. I googled side effects and cataract formation is one of them. Great that’s all I need! I’m seeing my eye doctor next week so will get it checked out then.
Work is a real struggle at the moment, it’s hard to get a productive days work done when you are battling pain and foggy eyes. The only thing that is keeping me going at the moment is painkillers (keeping me sane too!). I have been taking Panadeine Forte and saving the Endone for when it gets really tough and I can’t take it anymore. The feeling of relief when those painkillers kick in is amazing.
I am going away for the weekend so I am looking forward to having some down time to chill out and relax. My eyes will probably still be bad so I will still have the pain but I am hoping that being in a different environment doing something fun will take my mind off it and help me get through the weekend. At the moment I am taking one day at a time and just trying to get through as best I can. That’s all I can do.
Like the picture says “keep calm and smile on”.
4 days after the Avastin injection my eye is still looking pretty crook, got a lovely shiner to match the red eye. Saw the eye doctor yesterday for a check up on my crazy looking eye. Aparantly a subconjunctival hemorrhage is quite common after an Avastin injection, but the doctor was very impressed with mine, usually it’s a minor problem but mine is the biggest bruise she has seen in a long time. As well as the bloodshot eye I have a proper black eye underneath too. Unfortunately it can take around a month for it to clear up so I am going to look like I have been in a pub brawl for a while longer.
I need to get over my shyness with it, I have been hiding out in my office at work and avoiding people because it looks so horrible but if I’m going to be living with it for a while I need to get out there with my head held high and not worry about it. Perhaps I should make up a cool story about how I got it instead of a boring old injection!
I am hoping the I will be able to get my lens in that eye in the next few days, I was hoping for today but it is just too sore still. It has been really difficult at work wearing just one lens. I am managing on the computer OK as I have the font really big but I am finding reading paperwork really challenging.
The rhumatologist has increased my methotrexate to 15mg with a view to raising it to 20mg in about 4 weeks if my bloods look good. Hopefully will finally be able to get off of the prednisone.
I just want to get rid of the scleritis and get relatively normal eyes back (as normal as a keratoconic eye can be). This last 7 months has been a massive roller coaster for my eyes.
Have a good weekend all.