Has anyone else woken up to snow this morning?
Today couldn’t have felt my Christmassy! Snow, our village’s Christmas Market, and putting up the decorations. Just one perfect combination! I’m always that person who always gets so excited over snow! So of course, when I opened my curtains this morning and saw the white dusting, I rushed out with my camera!
Here are some photos from this morning, including my sister’s adorable Cockapoo experiencing snow and a Christmas Market for the first time:
My Appointment
Just over a week ago, I had my appointment with my Rheumatologist. A lot was said, some promising news, and some not-so-good news. But overall, I would say it was one successful appointment. An appointment very much needed! Also, I’m so grateful to have such a good team looking after me, as know not everyone has that.
Regarding treatment moving forward, the option to up my Methotrexate from 20mg to 25mg, is no longer an option. My liver is too inflamed and my lymphocytes are almost non-existent. So that option has been scrapped. So now, they are putting me forward for Rituximab infusions, which is a biological infusion. So fingers crossed I get approved, as it’s currently the real option I have right now.
Steroids Are Staying Up
My steroids are staying at 10mg for a while, as 7mg is no longer controlling my Lupus. Hopefully, if I do get approved for the Rituximab, and settled on it, I can look at reducing my steroids back to 7mg, or even lower.
My anti-inflammatory medication, Etoricoxib has been stopped as my kidneys are struggling. For anyone who doesn’t know, Etoricoxib can add extra strain to your kidneys. My consultant is hoping that the higher dose of Prednisolone will counteract the missing dose of Etoricoxib as it acts like an anti-inflammatory.
I had an x-ray to check if my chest was ok. This is the protocol for starting new immunosuppressants/biologicals. The results came back clear. I also have to have a lung function test a week on Wednesday. This is to check my lungs are okay with my Asthma and Lupus.
The Dreaded Illoprost
On my last blog, you may remember me talking about the rashes on my hands. How I thought they were Lupus rashes, yet were not clearing with the cream that I had been prescribed from Dermatology, and were getting worse. Well, I now know why!
My rashes are Chilblains. Since that blog, they have blistered and started to ulcerate. My consultant took one look at them and knew straight away they were Chilblains. I should have known better! Lupus rashes don’t turn purple, Chilblains do! It’s not the first time I’ve had the either, so I know what to expect! Basically, my blood vessels have narrowed again too much in both my fingers and toes.
My consultant asked if I was still taking my Nifedipine. I was like yup, every day. Quite clearly not doing anything! My consultant was like, I think you need to come into the hospital for Illoprost infusions again to get your blood vessels open again. Ughhhhhhh that dreaded word I had hoped I would never have to hear again in my lifetime! So here I am, waiting to get the phone call to go into the hospital for the dreaded I word. 5 long days of the most uncomfortable 6-hour long infusions. Still today, these are the worst infusions I’ve ever had to go through!
Just A Waiting Game!
I don’t know when I will get the call. If it will even be before Christmas or not. I’m down as urgent, it’s just now a waiting game!
Until then, I’ve got to try and prevent my hands and toes from getting any worse. I always make sure I’m wearing gloves outside, thick socks, and not letting my hands or toes get cold. I’ve got a heated fleece, and some of the heated hand warmers too, to put inside my gloves. Honestly, the heated hand warmers in your gloves work a real treat! I’ve been using them for years, every winter. I wear merino wool thermals to keep my core body temperature warm. I wear slippers around the house to look after my toes.
To be fair, all this I’ve done for years, every winter. It’s worked the last few, but this Autumn, my hands and toes have decided to rebel. Sometimes, no matter how hard you try to prevent it, your body does what it wants, especially when the wolf is involved and when he’s angry! One of the many problems I have to face when my Lupus isn’t under control. Just like it wasn’t, the last two times I had to have Illoprost!
Here are some photos of my hands currently:
That’s it from me this week! Alex is sat waiting for me to get this written so we can put up the Christmas decorations.
Oh, but before I go, if you are wondering what I got up to last weekend in the van, here are some photos:
We saw all the seal pups at Donna Nook, Lincolnshire. They were sooo adorable! If you haven’t been, I recommend it! There are hundreds of them! They are only here in November and December. They then all go back to sea, until next year.
Until next week,
Goodbye for now
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
