And the “Winner” is…

Tysabri!  I’m sticking with Tysabri. 

Yeah there’s a possibility of PML, but at least i know that that exists and there is a plan in place to mitigate.  My feeling is that Gilenya is just too new and i’m willing to bet my last dollar that something is going to emerge that they didn’t anticipate a few months/years down the road.  I may lose that bet and with any luck i will, but u know how drugs go!  There already have been some things happening too… a few people have died including 1 person who died 24 hrs after taking their first dose – HELLO!  there is still investigation pending into whether the drug had anything to do with it but…

I’m not stupid, i know that there are risks with all drugs and death probably is the extreme case but i’d rather deal with the known risks of Tysabri than the unknown (for now at least) risks of Gilenya.  We (my neuro and I) talked about the 2 therapies and he was also somewhat against my starting Gilenya.  *side bar* Sometimes the way he talks about Tysabri tho, i wonder if he’s on the baord of directors or was instrumental in creating the drug.

Anyhoo…so i will continue to endure the games with my veins (got stuck twice yesterday), the MRIs every 3 months (did i ever mention that as far as I can tell, i have NO side effects from the Tysabri?) and the knowledge that i’m at a higher risk for development of a brain infection to stick with “the devil i know”.

And the "Winner" is…

Tysabri!  I’m sticking with Tysabri. 

Yeah there’s a possibility of PML, but at least i know that that exists and there is a plan in place to mitigate.  My feeling is that Gilenya is just too new and i’m willing to bet my last dollar that something is going to emerge that they didn’t anticipate a few months/years down the road.  I may lose that bet and with any luck i will, but u know how drugs go!  There already have been some things happening too… a few people have died including 1 person who died 24 hrs after taking their first dose – HELLO!  there is still investigation pending into whether the drug had anything to do with it but…

I’m not stupid, i know that there are risks with all drugs and death probably is the extreme case but i’d rather deal with the known risks of Tysabri than the unknown (for now at least) risks of Gilenya.  We (my neuro and I) talked about the 2 therapies and he was also somewhat against my starting Gilenya.  *side bar* Sometimes the way he talks about Tysabri tho, i wonder if he’s on the baord of directors or was instrumental in creating the drug.

Anyhoo…so i will continue to endure the games with my veins (got stuck twice yesterday), the MRIs every 3 months (did i ever mention that as far as I can tell, i have NO side effects from the Tysabri?) and the knowledge that i’m at a higher risk for development of a brain infection to stick with “the devil i know”.

Well Looky Here

so i’ve mentioned before that i have alarms going off at all times of the day to remind me to take my medication AND that i haven’t a clue if/how all the meds i’m on actually do anything for me.

well…yesterday i found out.

that morning at 8, my alarm went off.  I was in the middle of making breakfast, so instead of walking to the alarm to turn it off and take the pills and then walk back to making breakfast, i just let the alarm keep going and the plan was that when i sit down to eat, turn it off, take the pills and eat.  well i turned it off and began to eat.

As the day went on, i really found that things were a little off.  I was jerkier than normal (more puppet like if u will) and the whole walking thing was actually getting on my nerves and pissin me off.  I normally work out, with a personal trainer, on Thursdays and i was actually thinking of canceling the session (a valid reason to cancel – WOOHOO) because i didn’t know that i could make it.  Anyhoo, i kept on trucking on as i do…

A little later i was talking to a friend and he was asking me about the medication and how things were going, etc etc and that is when it dawned on me that i didn’t take my 8am meds!  it was 1:53!!!  no wonder i was all out of sorts- WOW!  those actually do something…an hour later, i got up for something and i was normal (or at least as normal as i can be).

good to know that i’m not taking them for nothing!

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