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!
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!
Crikey this chemo knocks the stuffing out of you! Had my infusion yesterday, was nauseous and getting hot flushes all day they had to give me antihistamines, anti nausea pills, paracetamol and steroids! . Threw up last night and today I’m so tired and fluey I’m barely functioning.
I can’t wait to get home from work to lie down!
The nurse called me earlier to book my next one in for 4 weeks time, oh joy!
Now to get through the next hour till home time……
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.
I like this quote. As a person who suffers with chronic pain every day it feels real to me, I can really relate.
Every day I go to work and put a smile on my face when inside I am crying in pain. Some days are worse than others but I have some level of pain every single day without a break. It really starts to wear you down. I often moan a bit at work, but my colleagues have no idea of the pain I am in every day. I get up in the morning and put that brave face on and it stays there for the duration.
My partner is amazing, even when I am trying to put a smile on my face she knows when I’m not doing so well. Like the quote says she must see it in my eyes. Oh yes, the moaning out loud probably gives her a clue too!
I rely a lot on strong pain killers but do realise this shouldn’t be a long term solution. I often try to find other solutions to my pain but giving myself a pep talk and practicing mindfulness doesn’t really cut it when I am laying there in agony.
I try to take it one day at a time. I used to fret and worry about how long this illness would last but now I know that there is no value in that it just makes me depressed. Now I just get through each day and relax in bed at night knowing I have conquered another day.
This morning I am sitting in a coffee shop enjoying a skinny cappuccino whilst writing this post. A positive thing to come from this is the realisation that I am much stronger than I ever give myself credit for. I don’t let my pain stop me doing things and I live a full and very happy life. I am a warrior!
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.