@Sewing-chick

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Sewing-chick

My Cladribine experience

I wanted to describe my experience of being given Cladribine. This is a treatment that may stop MS activity. It is given on three separate occasions. The first time the person with MS has three sets of injections of Cladribine. A month later their lymphocyte count is checked and, depending on what it is, they get zero, one, two or more sets of injections. They then have another course of injections a year later. I had agreed with one of the doctors at Barts that I wanted to try Cladribine, had blood tests which showed normality and then it went like this. Day 1: The nurse at the Royal London hospital gave me two 5ml injections of Cladribine in my stomach. The injections hurt a bit and I did feel ropey afterwards, but I'm pretty sure that was from the lumber puncture I had just before the Cladribine. I left the hospital - no overnight stay necessary (or possible) for Cladribine. Day 2: The nurse at the Royal London gave me two 5ml injections of Cladribine in my stomach. The injections hurt less than the day before and I felt pretty normal afterwards. The nurse gave me anti-viral tablets to take for eight weeks, because the Cladribine reduces the body's ability to fight off viruses. I left the hospital. Day 3: You can probably guess what happened - the nurse at the Royal London gave me two 5ml injections of Cladribine in my stomach. By this time I was completely used to it and felt normal before and afterwards. I left the hospital and went home. To give you a bit of background - I am 51 and was diagnosed with MS seventeen years ago. For the first eight years after diagnosis, I saw fairly slow deterioration in my walking but nothing you could really say was a relapse or a remission. About nine years ago, my walking started to deteriorate faster. A couple of years after this I started to have lots of problems with my bladder (frequency, urgency and retention). These continued for about five or six years - I was self-catheterising three or four times a day and still wearing pads and having accidents. About two and a half years ago, my bladder control started to improve and now it's pretty good. I go three or four hours between visits to the loo and don't have to get up to go in the night, but I still have a bit of urgency sometimes. I still take Regurin every day and I take Clonazepam before bed to get rid of leg spasms while I sleep. This time last year I had trigeminal neuralgia (shocking facial pain) for about six weeks, which cleared up completely after that. I've never been told whether I have progressive or relapsing-remitting MS. It seems to me that my disease doesn't fit comfortably into any category. How am I now, two and a half weeks after my first dose of Cladribine? Well, not massively different. I thought my walking was somewhat better (still fits into the 'just terrible' category) but not having such a good day today, after waking very early with my leg twitching. My bladder control is the same as before and I'm going on the cross-trainer for 27 minutes most days. I shall try to keep this updated as I go on with the treatment.