Over two years on and my scleritis is still flaring continuously and at times is extremely painful. I have failed prednisone, rituximab, metrotrexate and azathioprine treatments.
My doctors have brought out the really big guns this time, I have just been started on 100mg Cyclophosphamide daily. Already I am feeling nauseous so I know this isn’t going to be good.
Before taking the med I was reading up on it because I like to be informed about what i’m taking and the side effects are horrific. If the only thing that happens to me is I get nauseous and lose my hair I will be doing ok! Yes you can even lose your hair at low doses. One of the common side effects that is concerning me a bit is that you can get really bad cystitis and blood in the urine. Because the drug is so toxic it can’t sit in your bladder you have to keep drinking and peeing to keep it clear. It can’t be taking at night because it cant sit in your bladder for that long.
Well this is day 1 of the treatment, I have to go for fortnightly blood tests and see my rhumatologist again in 6 weeks. Lets hope this works!
By the way another side effect is appetite loss, I really hope I get that one because I have medication induced weight gain and I am desperate to get some off. I will be really happy if I get that one!
Will keep you updated, have a good weekend.
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!
Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate. I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.
I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza. It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!
I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back. It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies. But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.
My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment. I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery. I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain. The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.
I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem. I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!
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 ☺
My endeavour to find someone to chat to with scleritis has been a big flop. I know it’s fairly uncommon but I can’t be the only person out there suffering with this horrible disease. My GP has never treated anyone with scleritis before so that’s a dead end. I guess I could ask my eye doctor if he knows anyone who might be up for a chat.
I put a couple of posts out there on old scleritis forum posts and wrote a post on my blog, no likes or comments on either. I would so love to chat with someone who is going through the same as me right now. Chronic severe eye pain is such a debilitating thing, it’s hard to describe and it’s hard for my loved ones to understand how painful it can be. They are so wonderful and are sympathetic but only someone with scleritis will know what I’m going through.
At the moment I have a flare up in the right eye and the left cornea is a little hazy due to the long term inflammation, it’s like looking through a fog.
If anyone out there knows of anyone with scleritis who would be willing to have a chat, please could they contact me via my blog. This is my last attempt, if I don’t get any responses I will just leave my scleritis page up on my blog and hope someone finds it one day.
Have a good day all.
We had a great weekend of camping at Levuka 4×4 Park near Woodenbong NSW, spoilt by one thing. Yes you have guessed it, my eyes.
It’s amazing that two tiny pieces of the human body can cause so much misery. It’s not just the pain; it’s also the loss of vision. We were sqitting around the campfire and the sky was beautiful and clear. Everyone was saying wow look at the stars they are so beautiful; they really couldn’t believe it when I said I couldn’t see the stars. They were pointing out the Southern Cross and the Milky Way and all I saw was blackness. Nor could I see the trees, birds, or anything else that my fellow campers pointed out to me.
A combination of Keratoconus and Scleritis has really taken its toll on my poor eyes. They are really damaged and struggling to get any type of useful vision every day.
One thing that did scare me at the weekend was when we were sitting around the campfire. I kept freaking out thinking that the flames were lapping at my legs about to set my pants on fire. Everyone was like, settle down the flames are nowhere near you, but to my crazy eyes I was about to become a towering inferno. It really put a damper on what should have been a fun experience with my family. At times it became quite scary and stressful.
How I look affects me too, it takes away my self-confidence. My eyes (one or the other and sometimes both) are always bloodshot and look horrible. When I meet people I try to keep my sunnies on because I can only imagine what people are thinking when they see my eyes.
It makes me miserable and depressed and I really can’t see an end to it. I have an appointment with my eye doctor tomorrow. You know the drill, sit in the hospital waiting room for 3 hours and then either get an injection in the eye or increase the prednisone, neither of which seems to be doing much. We need to find a solution; I can’t be on the pred long term. The Methotrexate was meant to do away with the prednisone but that hasn’t worked so where do we go from here? I don’t know and that really scares me. What if they can’t do anything and I am left like this long term?
That is my biggest fear, what if they can’t do anything to help me and I am stuck like this forever. That doesn’t bear thinking about.
Sometimes I lay in bed and cry and wonder what my future will bring, how long will I be able to continue driving, working, reading and doing all the other things I love doing. I don’t know is the answer and that scares me.
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.
Despite being on Methotrexate and Oral Prednisone my scleritis is still flaring up. I saw my eye doctor yesterday and he recommended a medication that is injected into the eye … not fun!
I have already had the right eye cut and had steroids injected into the cuts which was a horrible procedure and it still flares up on occasion but is generally much better. This time it was the turn of the lucky left eye.
I was feeling a bit scared and tense but the eye doc did the injection and I was like wow didn’t feel a thing! Anyway she takes another look at the consultant’s notes and realises that she hasn’t given me enough so I have another injection, a much larger one. Well to say that hurt is an understatement! Because it was a larger injection it expanded my eye and it was so painful. She took the needle out and said oh there’s still some in there, so in it went for a 3rd time. By this time I’m panting as though I’m about to give birth, hardly able to stand it.
Afterwards my eye looked like it was popping out of my head because it had expanded so much. The doc checked that I could shut my eye properly and sent me on my way. So I have one lens in, one eye that’s throbbing like a mother and I have to drive home. I’m an expert at the one eyed driving trick by now.
This morning it’s not feeling too bad, a little red and very tender but much better than I thought it was going to be. As I am now on Predforte drops I can’t wear a lens in that eye so I’m feeling a little unbalanced and sitting with my face real close to the computer at work so that I can see it properly.
Am hoping that this will do the trick and keep the scleritis at bay, I don’t know how much more I can take, it’s been constant pain for almost 6 months. I don’t know how on earth I am keeping my bi-polar in check through these tough times; I am keeping surprisingly cheerful which is very good for my mental health. Must be that I have a good team looking after me, my med combination is working great and I’m a tough old bird!
I had a scare on Saturday, my eye started bleeding! As you can imagine I was totally freaked out. I had a little bit of blood on Friday evening, and didn’t really think much of it. Went to bed woke up on Saturday morning with blood all round my eye. The eye was white with no sign of injury, and then I noticed that the blood appeared to be coming from the area of my tear ducts.
On Sunday I had a little more bleeding, but nowhere near as much as on Saturday.
What the heck is that about!
Of course I went to consult with Dr Google as you do, but there is very little information on the web about bleeding eyes, as far as I can tell it is very rare. There is a condition called Haemolacria where people have bled tears from the eyes but I’m pretty sure I don’t have that, as it appears to have been an isolated case and not an ongoing thing and it only bled in the left eye and not both. Talking of isolated cases, I do recall that this happened to me once a couple of years ago, but then it never happened again until now so I forgot about it.
I’m wondering if I have an infection or broken blood vessel causing the bleeding, according to Wikipedia that could cause it.
Another thought … maybe the Methotrexate caused the bleeding. I read the consumer information leaflet that came with the pills and bleeding can occur, mostly nose bleeds or bleeding gums but hey I always have to go one step further and be different so why not bleeding from the eye! That’s a question for my Rhumatologist.
I see my Opthalmologist in a couple of weeks so I will mention it to him then, he will probably be really excited about having something so unusual come up, he loves a challenge! If it happens again before my appointment I will of course go and see him sooner.
This is just one more thing to add to my long list of ailments and yet another thing to worry about. I reckon I should have my own TV show about medical mysteries as I have so much going on and not many answers!
Still riding that roller coaster!