For anyone who hasn’t read my previous posts on this, cladribine is a possible cure for MS. It’s presently only licensed as a drug for cancer but the doctors at Barts will give it to people with MS (if you ask nicely).
My cladribine experience so far has been very straightforward and easy to deal with. I was already in the outpatient room, on the bed, having just had a lumbar puncture (more about that below). The doctor had checked my lymphocyte count which was in the required range. I rolled up my top and had two 5ml injections of cladribine into my stomach. This hurt a bit, the way injections do and the injection sites were a bit sore for an hour or something afterwards. But the experience was pretty much a big nothing.
When I arrived on the ward to get my injections, a couple of hours before, I was told there might be a problem. They had looked at my blood test results and my lymphocyte count was really low. I was a bit confused. I had only just stopped taking Gilenya when I last had blood taken and Gilenya makes your lymphocyte count low, that’s the point of it. I explained and was told that I should have had a blood test in the last few days (but no-one had told me). The MS nurse agreed to take blood straight away and rush it to the lab so they could test it while I had my lumbar puncture.
I had the lumbar puncture (I’d chosen to, to help with research), which didn’t hurt at all (apart from the anaesthetic injection before the doctor started on the LP itself). Afterwards I felt OK, while still lying on the bed and was very relieved to hear that my lymphocyte count was normal and that I was going to get the cladribine. On getting up after the cladribine, I felt very dodgy (technical term) indeed. Whether that was an effect of the cladribine or the lumbar puncture, I shan’t know until I have my second and third injection, over the next two days…
So message is, cladribine is easy to have but make sure they’ve informed you of all the tests you need beforehand.