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!
So I’m over stage 3 of the migraine, the horrible miserable pain and now I’m on day 2 of the hangover. I seriously feel like I have been for a wild night on the booze and then run over by a bus! The worst thing is I am trying not to take any more pain killers as I don’t want to get into a cycle of rebound headaches.
The pain isn’t really bad but it’s just there all the time and very annoying. When I cough or move my head too quickly it feels like my brain is banging around onto my skull. A couple of paracetamol would really help but I’m scared to take any more pain killers as I have been stuck in the rebound headache cycle before and it’s not pleasant. I’m just trying to ride it out.
I’m hoping that by tomorrow I will be feeling a lot better, this little quote says it all, you really do have to recover from a migraine and it can take days – oh joy!
Here is a bit of info on the Postdrome stage for those who don’t know anything about it.
The postdrome stage of a migraine attack is the fourth and final stage. Most people would think that the fourth stage would be a huge sigh of relief and in some cases it could be but the final stage still brings about several different symptoms that can be painful and hard to cope with. Coming down from the third stage of a migraine is exhausting, the pain and misery that was had during the third migraine stage can leave a person feeling weak. The postdrome migraine stage is the fourth and final stage of a migraine.
The postdrome migraine stage has several linger side effects and symptoms such as the extreme fatigue, muscle soreness, head pain and bouts of cognitive confusion. The postdrome migraine stage consists of mild head pain that lingers for a spell. The side effects and symptoms of the postdrome stage often linger for two or three days after the third migraine stage has disappeared.
I’m feeling very nervous about being at work this morning. Last Friday my boss of 10 years left and I now have a new boss. I don’t do change very easily, maybe because of my mental illness. I am so full of anxiety this morning I could throw up.
I have met my new boss as we have had a handover period, he seems very nice but I know things are going to be very different. Getting to know a new personality and having to work closely together, learning new tasks and different processes etc.
I know I can do the job so I have no idea why I feel so bad. You know when you are so comfortable in your job it’s like a pair of comfy slippers; you know how to do things without even having to really think about it. Don’t get me wrong I’m up for the challenge I am just feeling very very nervous!
Just writing this down is quite cathartic, it’s making me think about how I am feeling and is making me take a step back from my anxiety and do some breathing exercises so it was worth writing this. I have helped myself!
The boss is due in shortly, so let’s just see how we go, I am sure that we can make it work, I’m telling myself that change can sometimes be good!
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 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!
I saw this quote on Facebook this morning and liked it. The world sure would be a better place for it!
I’m working on the leopard from Animorphia at the moment. I really love this book it’s so much fun colouring the doodles.
I’m trying not to finish it too quickly as I am in hospital for the day Thursday and want to take it with me. I will be hooked up to a drip for 7 hours getting my chemo and I will need something to do to stop me going nuts from boredom!
So far I have used caran d’ache luminance pencils, prismacolor and polychromos. A little bit of gold and silver gel pen too.
This is so true, love this quote.
I have got so many health issues at the moment and I’m in daily pain but I am still so happy. It really could be a lot worse. For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.
I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.
Life is good despite the hardships and I’m thankful for that.
I’m on my 3rd picture from Imagimorphia. It’s an awesome book, I love it. It’s just like Animorphia but has a bit more variety in it.
I’m going to buy another copy of both Animorphia and Imagimorphia as I want to colour some of the pictures I have done differently.
I got a few more Caran D’ache Luminance pencils in the post today, they are expensive so I buy a few at a time to increase my colours. I have plenty of colours since I bought the 132 set of prismacolors a couple of weeks ago but I still need more. Does that make me addicted? Lol