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.
I saw my rheumatologist on Monday and they have changed me over from Methotrexate to Azathioprine (Imuran). Imuran is an immunosuppressant which will kill off my immune system to hopefully stop my immune system attacking my eyes. Reading the leaflet in with the med is quite scary the side effects are pretty horrible. Let’s hope it helps my eyes and I don’t have too many side effects. I will have to be careful around sick people and I need to wear sunscreen when I go out as I will be more prone to cancers.
I am on 50mg for two weeks, and then I get a blood test to make sure my bloods are ok then I go up to 100mg and then have another blood test two weeks later. Then I see my rheumatologist for a review.
Being on these strong chemo meds really got me thinking yesterday, if something happens to me and I have to go to hospital nobody would know the cocktail of drugs that I am on, many of which interact with other drugs, in particular the Imuran.
As I result of my thinking (oh why does thinking always cost me money!), I found via Google search a company called Medic Alert Foundation. You wear a bracelet with a telephone number to call and your membership number on and they hold a database with all of your medical history, drugs, next of kin, doctor’s details etc. In the event of an emergency they can be contacted by medical personnel who will be able to get my medical details. There is a yearly membership fee to stay on the database but the cost is negligible.
I thought this was a great idea, I didn’t like the cheaper stainless steel bracelets, I figured that if I was going to wear this bracelet every day I would have to really like it so I got a pretty sterling silver one.
It will give my family peace of mind to know that in the event of an emergency I can be taken care of properly because the medical team will have access to my history. Makes me feel better too, kind of like a security blanket.
The bracelet will be with me in the next week or so and I have completed all of my details in the database so I am good to go ☺