Cladribine for ppms

Primary progressive MS
1

has any ppmsers had Cladribine did it help?

2

There are a few articles on the Barts Blog, including this one.

http://multiple-sclerosis-research.blogspot.com/2018/05/not-managing-expectations-in-someone.html#more

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3

Has anyone had it tho?

4

Sorry, not that I have heard!

Nina

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5

I was told in November last year that I had PPMS and had the first set of Cladribine injections in February this year with the second set in March. Now waiting for February next year for round two. MS2017

6

How did it go getting it done? Any improvement?

7

I am lucky that work are very flexible, probably to do with 29 years of working for the same company! Went into the office to have breakfast and check nothing urgent needed and then went over to the hospital. Had the injections and then back to work, about an hour total for the trip, for the three days of the first bunch. Had the follow up blood test where they decide how many injections needed for the second set and repeated the process of office for breakfast and checking nothing urgent followed by heading over to the hospital for the injection. I was lucky that I only needed one injection this time but they would have let me head as many times as I needed.

At the time I had an upset stomach meaning a rush for the toilet but this may have been due to the Anti viral drug I had to take for 60 days from the start.

Not sure I have seen any improvement but then my understanding of Cladribine is that it is supposed to slow down the progression/any relapses experienced.

Hope this is of some assistance.

MS2017

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8

I’ve been trialling Cladribine for 2 years and have my final blood test this month. I’ve been having 3 monthly walking and pin tests and my condition shows no sign of any significant decline

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