@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.
@cherish

Good morning to you @sewing-chick Very interesting ? I'd certainly take Cladribine if offered. I'd even travel to London to get it. How are you? Hopefully wellish? Lisa xx

@tessa

Good morning indeed @sewing-chick Thank you for that interesting post. I don't fit into any categories of ms either. I was diagnosed in 1965 aged 16 I have had an interesting ( I think) history. Total and sudden paralysis for five months at 16 . Slow complete recovery over next five months .Then absolutely no symptoms at all .....zilch ....no medics no treatment no relapses .nothing at all.....forgot about it ...until the last few years when I am told I now have spms! So apparently no treatment available when I need it other than self funding Fampyra. I have not yet decided whether to try the free introductory offer! Concerned about funding issues if it works! Keep us posted about your progress Tessa xx