Firstly, I want to start this week’s blog, by sending my love to anyone who has been affected by Friday’s storm. Some of the footage I’ve seen is just devasting! Thankfully, where I live we’ve been ok!
It’s been a few weeks since I’ve been on here and written a blog. The first weekend I was away in the van in the Peak District, making the most of the last bit of summer. It was lovely! It was lovely to be able to sit with the van doors open and not be cold!
Then last week, well I was meant to write a blog, but I ended up spending Sunday in bed sleeping, with very sore, inflamed eyes!
A lot has gone on in the last three weeks, so grab a cuppa and get comfy, I’ve got a lot to tell you!
Monday Morning At The Hospital
After a lovely weekend in the Peak District, the new week started with a trip to the Eye Hospital. I was there to see the Cornea Consultant. I was hoping for a bit of good news. I was hoping to hear my new eye drops have started to make a positive change in my eyes.
I got to the appointment and after a quick vision test, they stuck paper into my eyelids to test my tear production. The Schirmer’s test is a great way to measure the amount of tears produced over 5 minutes. Mine were almost bone dry, which shows my eyes were still severely dry.
I was then taken into another room with the consultant, where he put die into my eyes, and ran more tests, which yet again showed my eyes being severely dry. He then suggested doing a small procedure on my eyes. He suggested fitting some Punctal Plugs into my tear ducts, to stop my tears from draining. He said if this doesn’t work, I will move on to the last line of treatment, which is a blood serum eye drop. However, I would need a blood donor for this. Normally, you would use your own blood for the eye drops, however, my blood is no good. It’s too contaminated with my illness!
But hopefully, the plugs will work, and these blood serum eye drops will not be needed!
Fitting The Plugs
I had some local anesthetic put in both eyes so I couldn’t feel a thing. He then inserted all four plugs, two in each eye. The procedure itself was painless. But once the local anesthetic wore off, the irritation began.
For the first few days after, I could constantly feel like there was something in my eyes. I had to try not to rub them too much, as you can quite easily dislodge the plugs.
As the days went on, the feeling slowly disappeared. However, my eyes began to get worse. They became very sore and inflamed. Every time I tried to put eye drops in, my eyes stung.
Back At The Eye Hospital
Thankfully, I was back at the Eye Hospital just over a week later. This time I was here to see the Retina Consultant. However, because of all the discomfort I was having, I asked him if he could have a look at the front of my eyes while I was there too. I wanted him to check the plugs were all okay, and the pain I was suffering with, was normal. Honestly, he was brilliant with me!
Before he started doing any of the tests on the back of my eyes, he took a look at the front of my eyes. After spending a bit of time looking at my eyes, he said my plugs are in correctly, and look like they are working. That was great news to hear! He explained how the pain, inflammation, and discomfort I was/am experiencing is completely normal after the procedure. He explained how it will last for quite a few weeks, but it will get better. I just need to give my eyes plenty of rest. He explained how he’s had them fitted once before, so he said he knew how much discomfort they can bring as your eyes adapt to them.
So now, it’s just a waiting game before I start getting some relief in my eyes. Still have to use all my eye drops, including my immunosuppressant Ciclosporin eye drops. I’ve also been using a heated eye mask throughout the day, which has helped to soothe my eyes. Honestly, I will just be glad when I get some relief with my eyes!
My Hydroxychloroquine
We then proceeded with the tests for the back of my eyes. I was here to check my Hydroxychloroquine hadn’t caused any permanent damage to the back of my eyes.
I had some eye drops put into my eyes to open up my pupils. They then took multiple images at the back of my eyes, to check for any damage. My consultant then sat down with me and showed me the images of the back of my eyes. So interesting to see!
Thankfully, my Hydroxychloroquine has not caused any damage to my eyes. However, he has advised me to stay on the lower dose, moving forward. He explained the amount of years I’ve been on it/will be on it in the future, increases my risk of macular toxicity. If this happens, the damage is likely to be irreversible.
Very frustrating, as I know I feel better on the higher dose. I know it manages my illness better than on the lower dose. But at the same time, I don’t want to damage my eyes, I need to look after them!
My Rheumatologist
My Rheumatologist Specialist Nurse rang me on Monday. She asked me how I’m doing. I explained how things have got bad recently. How, ever since my Hyrdorxycholoquine has been reduced, my Lupus/Sjogren’s has been so much more active. Day by day, it feels like it’s just getting worse!
To try and help me, she’s got me to up my Prednisolone from 7mg to 10mg for a while until the inflammation settles down again. She’s also in the process of getting my Methotrexate injections upped from 20mg to 25mg. My liver readings are a bit out at the minute. So she wants to check on them next week when I get my bloods done. She wants to see if there’s been any improvement, as Methotrexate can put a lot of pressure on your liver. She’s hoping the higher dose of Methotrexate will hopefully replace the missing dose of Hydroxychloroquine.
She also mentioned how she is still trying to fight for funding to get me on biologicals. She mentioned, how she reckons they could be such a game changer for me and my quality of life. Which is so frustrating, knowing there’s medication out there that could really help, yet I can’t currently have it!
Covid Booster
I was also meant to be getting my Covid booster on Friday, but she rang me again on Thursday, telling me not to. She said I need to wait for things to settle down with my illness first before I get it. Otherwise, it’s only going to make me a lot worse for me. I know she’s right, but frustrating too, as I need my booster!
Oh and to top things, I’m currently on antibiotics for a water infection!
Things may not be great right now, but I keep telling myself, that as days go on, things will get better! I’m just so grateful to have a good team of support at the hospital. A team that is trying to help to improve my quality of life, and that’s all I can ever ask for!
Until next time,
Goodbye for now.
Emma
xox
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