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 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.
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.
As you all know I am trying desperately to lose weight. It’s really difficult being on prednisone and psych meds all of which have a tendency to make you gain weight. Also struggling with chronic eye pain has made it so difficult to be motivated to exercise. Everything is going against me right now.
I am so pleased to be able to say that I have found my groove. I have been following a carb detox eating plan for a few days and have been walking every day too. I feel so much better already, much less bloated and I have more energy. I am still struggling so much with the pain but I have made a commitment to myself to walk on all or most days even when I am in pain.
Like my post said a couple of days ago I am fed up with being miserable and in pain, I’m going to be happy and in pain. I can do this; I get up and go to work every day even when I am in pain because I have to. So if I can do that every day I am sure I can go for a walk!
Another good motivational tool for me is my new Fitbit. I got the Charge HR and so far I am loving it. I have always had a Fitbit since the One came out and really like the app, the badges and emails of encouragement etc. It all helps to motivate me. My partner and daughter have Fitbits too so we have been walking together and the dogs absolutely love it!
Let’s hope I can keep on track and stay motivated. It is so easy to fall off of the wagon and slip back into old habits. I need to consider my feelings before I cave in and go for the bag of chips. How will I feel after I have eaten them after the enjoyment has worn off, pretty lousy I would say and very disappointed in myself. Thinking of the consequences might just be enough to keep me on the straight and narrow (I hope!).
I’m going to weigh in once a week so I will let you know how I have gone next Wednesday. Hopefully a couple of kilos will be gone.
Have a good day all and to all of you who are struggling to find you groove keep going, you will get there!
In an attempt to get my scleritis under control I had more needles in the eye yesterday – not pleasant!
This time I had a short acting steroid and a longer acting steroid so that it can start working straight away and continue working over the next few months.
Even though the doctor puts numbing drops in the eye it is still quite a traumatic experience. The worst thing is you can see the needle coming towards you which is a horrible feeling and then sometimes it still hurts putting the injection in. She did mix some anaesthetic in with the steroid so my whole eye area went numb pretty soon after the injections which helped. The whole eye area underneath swelled up so I looked like I had been punched in the eye.
I am hoping that these latest injections do the trick; I am so over the pain. I am also over people asking me what’s wrong with my eyes; they look a mess much of the time and it must make people curious. I hope they don’t think that I have something contagious!
I get worried that the scleritis will affect my keratoconus and make it worse in that the constant swelling will affect the cornea. I did have a very hazy cornea a couple of month’s back which took a month or so to resolve. It can’t be good for an already compromised cornea to have trauma like severe swelling. wondering if it could lead to hydrops? The doctor did say that due to the blood vessels in the eye being so engorged with blood they are starting to go into the cornea which will mean a corneal graft at some point unless we get it under control.
The future of my eyes concern me a lot, my vision is already pretty bad and the way things are going it will likely get worse. The doctor did try to reassure me that there were still plenty of drugs to try but I’m not so convinced, this has been going on for nearly 8 months now and we are no closer to solving the puzzle of why I keep getting scleritis flare ups. There is obviously something going on in my body and they need to figure it out before I totally lose the plot.
My quality of life is suffering, it affects everything I do, and it’s depressing the hell out of me. Sometimes I want to rip my eyes out of my head and think I would be better off blind than dealing with the constant pain and misery, but of course I don’t really mean that it would be awful, it’s just the depression talking. Thank goodness for pain killers they have been my saviour.
Am seeing my wonderful GP tomorrow for a catch up, she always makes me feel better about things, as does my psychologist who I am seeing next week so hopefully very soon I will be a bit more cheerful! I’m fed up myself of being miserable all of the time so fingers crossed I will be much happier very soon.
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.
So I go for my bone density scan today and the skinny radiographer chick tells me to get undressed and gives me a gown to put on.
Well this gown would have fitted Ms Skinny Chick comfortably; no way was it fitting Mrs Chunky Rollercoaster! Getting it on was like being in a strait jacket. Seriously, she couldn’t see that I’m a bit on the fat side and would need a larger size gown?
I pull it on and wriggle like crazy until I can pull it down; it only went down so far by the way, probably to the top of my thighs. Then the next problem I have is getting from the changing room to the scanner room without anyone seeing me. I would have died for sure but luckily I darted across the hallway and made it without being seen.
I can’t believe the skinny scanner chick didn’t look at me and think WTF! Honestly I looked a right sight, but she just acted as if everything was normal and I looked fine. I guess they are trained not to “look” at people.
When I was laying on the scanner bed she was like “just breathe normally” and I’m thinking breathe normally, this gown is so tight I can barely suck a breath in! I must have looked like a purple sausage bursting at the seams.
After the scan, a quick look left and right and made it back across the hallway, great :mrgreen:. The final worry was getting the thing off again afterwards; you know how it is when something is really tight, trying to pull it off over your head is a nightmare. Well anyway, a bit of wriggling and I got it off and was soon back in my own clothes.
So all in all it was a bit of a traumatic experience. Next time remember: no underwire in my bra and no zips on my pants then I don’t have to get undressed and wear a gown!
Have a good day all!