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Changing from Tysabri to Fingolimod

Hello to you all. I haven’t been on this site to post a question for some considerable time. I hope you are all as well as you can be and would now like some feedback about changing from Tysabri to the oral drug Fingolimod (Gilenya).

I have been on Tysabri for over 3years having 6 weekly infusions since severe relapses in 2011. I am JC Virus positive and realise that the longer I am on Tysabri the risk of PML increases.

There may be the option of changing to Fingolimod or another oral drug and would greatly appreciate any feedback from those of you that have been in the same situation and are indeed now on such medication? One thing I would like to know is…do you have to have a Lumberpuncture as one of the tests before you start on it??

Thank you for reading and letting me ‘pick your brains’ I now look forward to any replies.

Kind Regards Equus

No personal experience, but the Barts & London blog covers the subject a fair bit.

This guide might be useful, particularly the bit about the needle used.

http://www.clinicspeak.com/LumbarPuncture/#0/0

Fingolimod (gilenya) is an oral dmd.im taking it for 1 year,easy to take every day.You must spend 8 hours in hospital where they monitor your heartrate every hour as it causes your heartrate to drop a few beat per min,nothing major.You have an ecg machine hooked up to you to monitor you.Its nothing major,just quite boring sitting there so bring something with you to keep you busy.Hope this helps.

J

Hi Thanks for you feedback Whammel and site links.

And thank you also Jimmyk1 - could you tell me if you had a lumber-puncture as one of the test before starting on it? It is one thing that I have a ‘fear off’, but it wouldn’t put me off changing just would like to be forewarned. Also, do you get more headaches since taking the tablet??

Kind Regards Equus1965

Hi equus,you wont need a lumbar puncture for starting fingolimod so a blood test and a test to check your baseline heartrate and blood pressure.An ECG will be put on you to check hourly heartrate and it will drop after 4 hours but rises after that then if its ok after 6-8 hours you can go home.The gilenya nurse is nice,you will have no problems.Just the boredom of sitting in hospital. J

Hi again Jimmyk1 and thank you for putting my mind at rest. It’s very much appreciated.

Take care - Equus1965

Equus,glad to help.Its no problem with fingolimod,just the heart monitor on all day is so boring,its the only thing they do with you.Your heartrate will drop but you wont notice it but other than that you wont notice anything while you are on it after a week.Hate lumbar puncture aswell,worst thing iv got,never again.You dont have to worry anyway.Take care… Jimmy