@frankielideo 

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frankielideo

Gilenya

hi guys, is there anyone on gilenya, i am due to start on this on tues in belfast and im strating to freak out over pml i was on rebif for a yr and a half and it seemed to take away my symptoms but gave me a fave fever and back shivers, i ttok a replase this time last yr owhile i was on it and thats why they are changing me to gilenya but its taken so long i am off any medication since aug last year and im doing ok any advice on gilenya is welcome
@Stumbler

@frankielideo , I have split your update into a thread in its own right, as its going in a slightly different direction. Anyway, all the Disease Modifying Treatments (DMTs) come with risks. Even Rebif has risks, but these risks were mitigated by regular blood tests to ensure that specific markers were not approaching a risky level. Gilenya is the same, regular bloods will be taken to ensure the PML markers are well within acceptable levels. If not, the Gilenya will be stopped and another treatment offered. I'm sure someone with firsthand Gilenya experience will be along soon to offer their view. The fact that you've been off treatment since August is a concern. Is this an agreed strategy or incompetence on the part of your medical team? If it's the latter, then you need to chase them up.

@Sonia1984

From what I gather the PML risk is with any immunosupressant. My neurologist said within the first year the risk of PML is not even a concern. Even after the year on it your bloods are monitored every 3 months. Even then the risk of PML with Gilenya is lower then other DMD's on the market. The benefits outweigh the risk to me and I am willing to try what's out there to slow this down. Sometimes we have to take that leap into the unknown and have a little faith.