I saw my Rheumatologist this morning to discuss the next step in my war against scleritis. So far I have failed Methotrexate, Cyclophosphamide, Azathioprine and Rituximab. My doctor reckons that because scleritis is rare not much research has been put into treatments so they are just trying everything until they find something that works.
Ok so the plan is either Infliximab infusions or Humira injections. Because the treatment is expensive the hospital has to put a plan in to the expensive drug committee stating my case and hopefully they will approve one of them. The doctor reckons that they will probably go with the infusions because you can give a larger dose at once and you can be more precise with dosing as it goes on bodyweight. It will be a pain having to have to go to the hospital for infusions but at this stage I need to do everything I can to get rid of this nasty, painful disease before it wrecks my eyesight any more than it already has. I already have awful vision from the Keratoconus so I really don’t need the scleritis damaging my eyes too.
I am hoping that if the treatment works it will take away the swelling that I have under my eye. It looks awful like I have been punched in the eye and is from inflammation and the fortnightly steroid injections I have to have. I often have a black eye after the injections too. When I am meeting someone for the first time I really hate to look them in the eye because my eye looks so ugly. I find myself looking anywhere but their eyes which can be perceived as rude but I don’t mean it to be I am just a bit embarrassed.
The drug committee only meets once a month so it could be a week or two until I hear anything. In the meantime I have to stop the Cyclophosphamide at the end of this week as I have been on it for 6 months which is the maximum duration as it is an accumulative dose and I am now up to the maximum dose. It’s not working any more anyway so there is no point in continuing with it.
I will be glad to be off of the chemo and it’s associated side effects, although I know that the new med will have it’s own set of sides to contend with.
I felt that it was a really positive meeting this morning. The rheumatologist was great; she really explained things and listened to my questions and concerns. Let’s hope that this next line of treatment works!
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.
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.
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!
I have two hobbies, colouring and reading, I adore them both. Had some treatment on my eye for my scleritis earlier in the week as I am having a very painful flare up. The whole right side of my head was throbbing.
Anyway i’m a bit too sore to colour and my vision isn’t that good this week either so i’m going to read. I would literally die if I couldnt read so lets hope I never go truly blind! I love my kindle so much, when i’m having bad vision I can make the text huge if I need so I can still read.
If i’m reading or colouring my wellbeing is good
I have a dilemma!
Colouring is really good for my wellbeing and mental health, it makes me happy and relaxed and I really enjoy it. As you know I have severe eye pain and vision problems which quite often make doing day to day tasks difficult.
My problem is do I colour on my really bad eye days to make myself feel better and risk ruining a picture that I have put everything into and really like or not colour on those days and potentially feel bad.
Over the last couple of weeks I have ruined two beautiful pictures that I spent hours and hours colouring because my eyes were bad and I was in pain. The pics turned out so awful I didn’t finish them. Doing this seems a waste of my time,
colouring book pages and supplies. Or is it just good therapy, good practice and don’t worry about what I produce?
I don’t know, I’m in two minds really, I colour for my wellbeing mostly, but I also colour to show my friends because I love it and am quite good at it and produce some good work. Showing my friends and IG followers makes me proud as
though I have achieved something, and it makes me feel very good to get compliments and comments, which is also good for my wellbeing.
I guess I need to take it one day at a time and gauge how bad I feel and how much I need to colour for therapy. I could keep a separate book for days that I just need to colour for my wellbeing so that I don’t mess up any more of my favourites.
I dunno, it’s complicated being me!
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.