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My Cladribine Experience

So I started on Cladribine injections this week.

Popped into the hospital Monday.

Had to sign a sheet which was making sure I had been told various things and given an information sheet. Then injection into stomach just right of the belly button. Was due to take the triple test (think that’s what they called it) but the person I needed to see was busy. Was also asked to give a urine sample which normally would not be a problem but typically I couldn’t so took the pot away to be brought back the following day. Was given 60 days of an antiviral drug to take one tablet each evening.

Tuesday went along again and had the second injection just to the left of the belly button this time. Took the test, 9-peg, how well do you manage with every day tasks and a timed 25ft walk.

Went on Wednesday for the third injection. Back on the right side this time.

Had a slight bruise from the Monday jab, I do bruise easily, but other than that nothing else to report at present.

Back to the hospital the week of 19 March for a blood test and then 2nd round of injections starting on 26 March.

Once the 2nd round of injections are done I have to go for a blood test every three months.

I had a letter from the hospital around the start of all of this with the schedule of blood test weeks, year 2 injections etc and the final blood test for this treatment is in April 2020 so only a little way off.

Really good to know the process. Please keep us updated as to how you feel, how it goes and the pluses and minuses.

Sue

Arghhhh - what is cladribine? I’ve never heard of it and feel as though I should have.

Thanks

Min

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Hello Min, where’ve you been hiding? Hope you’re keeping nice and warm.

Anyway, https://www.mstrust.org.uk/a-z/mavenclad-cladribine My default for anything I don’t know about, type MS Trust and the word or words and up pops a page with all the info.

Sue

OK, quick update two weeks after starting treatment. Have had a bit of an upset stomach a couple of times meaning a quick run, figuratively speaking, to the toilet but only seems to be one dose per day. Think this is a side effect of the antiviral drug rather than the Cladribine. Spoke with the MS Nurse about this and they really want me to keep taking the antiviral drug so have suggested a trip to the local chemist and purchase Imodium. Other than that do not feel any other differences at the moment. Have a blood test in two weeks time and then follow up doses in three weeks depending on the blood results.

Further update.

Had my blood test at the start of the week following the first round and was waiting to hear how many injections I would need in the second round of cycle 1 (they call it cycle 1).

Hadn’t heard anything so called the hospital and they were awaiting the information from the blood test and then called back 5 minutes later to say the information had just come through and based on the result (0.6 for anyone interested) I only need 1 injection (out of a possible 3) so I am heading along Monday to get the injection done and then it is a blood test at the end of April, followed by a test every 3 months and then followed by possible cycle 2 in February next year.