Friday 4 May 2018

Retraining my B and T cells

My second lot of blood test results are in and things are looking good. My lymphocyte levels were at 0.04 for the first month and have only increased to 0.3 this month. 
My understanding of this so far is that this is good although as I will explain in this post, in the UK it's harder for us to tell compared to our US comrades.

To explain, Lymphocytes are a type of white blood cells. They are part of the full blood count (FBC) that will show up on your blood tests, normal lymphocyte levels are between 1.0-4.0. 
The tricky bit to explain is that there are different types of lymphocyte called T and B cells and then within this there are different types of T cells all of which have different jobs! If you're really interested in the science behind it then the following YouTube video explains T and B cells very clearly from about 4 minutes in. 
I found this video through a post by another Lemtrada blogger called Tracey 

In a nutshell, I translate that to mean that the slower the B and T cells repopulate, the less damage being done! 
The drug company website for Lemtrada/Alemtuzumab has a very whizzy graph to show what the suggested rate of lymphocyte repopulation is. However this is where things get complicated as in the UK we only show the general Lymphocyte count, in the US they split it into the specific types of B and T cells (CD4+, CD8+/CD19+) on their blood test results so it's far easier to track your recovery: 
So essentially, this graph just frustrates me as I don't know the individual levels for my Lymphocytes! GRR. For me, knowledge is power. Yes I'd probably fret over my levels on a monthly basis (and I have another 5 years of monthly blood tests to endure, I can just hear my veins crying!) but at the same time, I LIKE knowing what is going on. One of the most interesting things for me so far has been seeing my MRI scan pictures and understanding exactly what is going on in my brain and my spine. I find it fascinating! 
Based on the general Lemtrada patient population in the UK, it seems to me that aiming to stay under 1.0 for at least the first 6 months is a good thing and I've seen lots of Lem patients who only reach normal levels of 1.0 by their 11th/12th months of treatment. On the  other hand, (tricky balancing act that this Lymphocyte malarky is!) there are also reports of Lemtrada patients having their second round of treatment postponed because their lymphocyte levels were too low after a year, several of these patients had peaked at 0.6 and were denied treatment until their levels rose. So here's hoping my lymphocytes continue to do what they are supposed to for the next 12 months!
C x

No comments:

Post a Comment