Friday, April 18, 2014

So far, so good...

Firstly, thanks to the people who commented on my last post, and who Tweeted at me saying they were glad I have reappeared, it's nice to know that people actually still read, even if these posts are a bit strange and disjointed seeming - I feel like I'm relearning how to blog!

Secondly, I do have a little bit of a health update! I had my third round of Rituximab (my first here in the UK) last Friday, and it was extremely uneventful. I spent almost all day there, and, much like I did last time, felt completely fine. I was a bit "wired" that night when I got home, but otherwise ok. The only relatively minor issue was the three hour delay I had between arriving at the hospital and actually starting treatment, thanks to the specialist supervising me getting caught up in an accident on the motorway and being very late to the hospital to review my bloods and sign me off as healthy enough for the infusion! Oh well, it didn't really matter.

On Monday I went back to the clinic and I'm pleased to say that it actually went quite well!

No big changes yet, but I wasn't expecting any, since I've really only just started everything again, and the latest set of blood results they had were still pre-Rituximab.

The biggest change was that my CRP markers (for inflammation, and representing whatever the joint pain I had was) have dropped down from 30+ to less than 1! This means the steroids are working, which is good, even if it also means we might never find out what caused them to be so high.

Speaking of steroids, they've now been reduced from 40 to 30mg per day. I was surprised by this, as I didn't expect it so quickly. I was also a little freaked out, as I'm convinced that stopping them all together contributed to me relapsing in October! I absolutely cannot afford to have this happen again as I don't have enough kidney function left. Fortunately, the nephrologist seems to agree with me on this, but is also keen for me to be on the absolute lowest dose possible, to avoid other complications. It's pretty much like walking on a tightrope!!

I'll see him again in clinic in about 5 weeks (give or take an extra one because of a bank holiday), but also briefly next Friday when I have Rituximab again. So yes, so far so good. I'm happy with how things look like they're progressing.

Oh! One more thing, just in case you don't believe exactly HOW fine and bored I was last Friday, I'll leave you with a little video I took as they were swapping battery packs on my IV thing. Lookie! It's my pulse! #abitgross #butfascinating #yesiwasbored




Carolynne said...

Wow, you are going through so much and it must be so hard. I know it isn't much, but please know we are here for you!! Good luck.

Jackie Hall said...

I am very sorry to hear you are not the healthy young lady I left reading about on your blog a year ago.

Sorry I have been so buys with a conversion at work I have not really ready anyone's blogs.

I will be praying for you. Glad to see you are back!