I’ve been CCed into a letter that my St George’s Neurology Consultant has sent to a Dr at the Royal London Hospital. She has asked if he will consider treating me with Cladribine (or Mavenclad). I just wondered if anyone has this as treatment too. I’ve been reading about it. It has 2 courses which appears to be taken 5 consecutive days for two months, Then there will be a 2nd course 12 months later. Can this treatment be taken at home? Or is it a hospital treatment? I’m just wondering about it. Hopefully the Royal London Dr will treat me.
You have probably already checked the Barts Blog, but I noticed this bit.
“Cladribine only needs about 5-6 doses/year, and possibly for no longer than two years. This is as easy as alemtuzumab and even easier because you don’t have to go to hospital for the infusions and it doesn’t cause adverse reactions (reactivation of old lesions and problems associated with steroid use).”
Went on three consecutive days for injection in the stomach. Had a blood test after about 3 weeks and depending on the result of the test depends how many injections you get the following month. I was lucky and only needed 1 injection but it can be anything from 0 to 3.
Now waiting for next year, with relevant blood tests in between, for round 2.
I’m on Mavenclad, it’s pill form and I had it delivered to me, then just took it at home. I can’t remember how soon after taking the two months I needed to get bloods taken though. Think I have them taken every 3 months now. Was all pretty painless for me!
Hi jaydee. I’ve read your email with great interest. I was also referred by my neurologist at St. George’s to Royal London for Cladribine. My appointment with him took place Friday last week. The consultation was amazing. He believes that all people with MS should be treated the same and that the categories used are oversimplified. This was what I always felt ie. that when you have relapsing remitting ms it doesn’t mean that you only have inflammation. Similarly, if you have progressive MS it doesn’t mean that you only have neurodegeneration. I’m at the beginning of the process, still few stages before I can begin the treatment. Even if Cladribine doesn’t help me that much I’ll be happy that the consultant overseeing the treatment is on the same page.
Hope your appointment goes well. The consultant is great.