What a week it has been! A busy week of medical appointments, but also a successful week of medical appointments! I feel like I had a lot of good plans in place!
Please note: I am still struggling a lot with my eyes. I am finding it quite painful to look at this laptop screen. So I’m basically going to write this blog, but I’m not going to be proofreading it back to limit the time my eyes are looking at the screen. So I apologise if there are spelling/typing mistakes. I know many of you enjoy reading my blogs, so I don’t want to not write it because of my eyes! 🙂
Dermatology
My Dermatology appointment went really well! They got me to take my glasses off and could see straight away the butterfly rash on my face. Honestly, my face is currently a mess!
He also said my biopsy results confirmed my rashes are definitely Lupus rashes, which is what my Rheumatology had always suspected. But it’s nice having that confirmation. It’s very easy to blame everything on my Lupus when actually it could be something else. But thankfully, it’s not something else! I didn’t need another condition to deal with along with my Lupus and Sjogrens.
Here’s the current state of my face (I know I look a complete mess):
We Have A Plan
Dermatology has prescribed me two different creams. A steroid cream for my arms and hands, and another cream for my face. Both creams I will have to use long-term. This should hopefully help to keep the rashes away. I honestly cannot remember the name of the creams! I need to start writing things down when I go to my appointments because I end up forgetting half the things they tell me! When I get my creams next week from my GP, I will let you know!
The creams will get rid of the rashes, however, it will not solve the bigger problem that we are dealing with, the activity of my Lupus. These rashes are a sign of my Lupus being active, and not under control, along with all the eye issues I’m suffering with at the moment. If you’ve been following my blogs since March, you may remember me talking about my dose of Hydroxycholorquine being halved, due to my eye trouble. My Rheumatologist wanted me to go for extra eye tests at the hospital to check the medication wasn’t damaging my eyes (as it can be a side effect of long-term usage of the medication). Halfing the dose of one of my most important medications was never going to be good news. This is why I am suffering like I am today with my all Lupus rashes and severely dry eyes caused by my inflamed tear glands.
Might Be Time To Say Goodbye To Hydroxychloroquine
Dermatology has decided it’s probably best for me to come off Hydroxychloroquine altogether. Being on a half dose is doing my body no good. With all the problems going on with my eyes, I’m not going to be able to up my dose anytime soon. They suggested how I would be better off on a completely different medication altogether, on a full dose. They have suggested Mycophenolate or another medication (which again I cannot remember the name of) to take instead of Hydroxychloroquine. I explained to my Dermatologist, how I used to be on Mycophenolate in the past, yet it did not help. He reckons it will work better with my Methotrexate, but I’m honestly I’m not convinced. Anyway, he’s going to write to my Rhuemalogist and let them make the decision. My Rheumatologist knows me well and knows how my body responds to medication. So I can trust him to hopefully make a good decision about my treatment. But it looks like it could be the end of an era for my Hydroxychloroquine. This is quite sad, as it was one of the first medications I ever got put on when I was diagnosed with Lupus, at age 21. It’s also a medication I know controls my illness well, when on the correct dose.
Asthma Review
On Thursday, I had my yearly Asthma review. That went well! My peak flow has improved since I started taking Montelukast back end of last year. We also have put a plan of action in place for this winter, if my chest does get bad again. If my chest does flare, I can increase my steroid inhaler from two puffs twice a day, to two puffs four times a day, for two weeks. Within that time, I have to arrange to see the doctor or Asthma nurse, who will then look at upping my steroid inhaler for the winter months if needed.
Flu Jab
I had my flu jab on Friday. I haven’t felt too bad afterwards, just a bit of a sore arm, and a bit tired! I only got the flu jab and not the Covid jab. I will get the Covid jab in a few weeks, but getting them both together is not recommended for me, as the stress they can put on my body. Plus, a bit of planning needs to take place for my Covid jab. I have to stop my Methotrexate for two weeks after, to create antibodies. So I like to get it when I don’t have a lot on, as it can put my body in a bit of a fragile state.
Bloods
I also had my monthly routine bloods done this week. However, still waiting for the results! Hopefully, everything will be ok! I should receive them on Monday.
Eyes
My eyes are still not great and it’s really starting to get me down! Just the constant pain and blurry vision. It’s awful! I know my eyes will get better, but at the moment it’s just a waiting game. I’ve been on Ciclosporin for 3 weeks now. They say it can take anywhere between 6 to 12 weeks for the eye drops to work and reduce the inflammation. Once the inflammation is down, my tear glands should start performing better, and start producing enough lubrication for my eyes, so they can function properly again. I’m back at the eye hospital a week on Monday, so hopefully, they will be able to see if there’s been any improvement.
Next week, I’ve got my 2nd session of cryotherapy on my verrucas. We also might be away next weekend, depending on how I am feeling. If we do decide to go away, there will be no blog.
Until next time,
Goodbye for now.
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
