Tag: decisions

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”.

Dr.’s Visit

so i went to my neuro last week Tuesday…did a 2fer – went to see him and did my infusion one time (1 stick – woohoo!).

The disease is stable – my exam went well – nothing to report on that.  he asked me if i’ve figured out the correct combination of all the drugs to take, i said yes and told him that i don’t want to change the pill regimen.  the things are not a bother and don’t impact my life negatively in any way – got rid of all the napping, so i’m happy.

there is a blood test that he is going to perform to show if i’ve been exposed to the JVC virus (the one that causes PML – the brain infection); (i can never say that without laughing out loud – i think it’s so damn ridiculous)!  It’ll be a year since i’ve been on Tysabri, so they like to test at a year to see if the patient tests positive to the anti virus and then make a determination as to whether or not Tysabri really is the way to keep going.  I hadda (have to) say, that i hope that i can stay on it…i don’t want to go back to a daily shot, nor do i want to start takin the new oral pill because…well it’s new (that coupled with the fact that there’s already been some BAD thing (i can’t even pretend to remember the word he used) reported).

They’ll take the blood for that test when i go for my next infusion – must remember to drink a bucket of water the day before and day of so that my blood will flow that time, so that they can get enuf to do the test!

Dr.'s Visit

so i went to my neuro last week Tuesday…did a 2fer – went to see him and did my infusion one time (1 stick – woohoo!).

The disease is stable – my exam went well – nothing to report on that.  he asked me if i’ve figured out the correct combination of all the drugs to take, i said yes and told him that i don’t want to change the pill regimen.  the things are not a bother and don’t impact my life negatively in any way – got rid of all the napping, so i’m happy.

there is a blood test that he is going to perform to show if i’ve been exposed to the JVC virus (the one that causes PML – the brain infection); (i can never say that without laughing out loud – i think it’s so damn ridiculous)!  It’ll be a year since i’ve been on Tysabri, so they like to test at a year to see if the patient tests positive to the anti virus and then make a determination as to whether or not Tysabri really is the way to keep going.  I hadda (have to) say, that i hope that i can stay on it…i don’t want to go back to a daily shot, nor do i want to start takin the new oral pill because…well it’s new (that coupled with the fact that there’s already been some BAD thing (i can’t even pretend to remember the word he used) reported).

They’ll take the blood for that test when i go for my next infusion – must remember to drink a bucket of water the day before and day of so that my blood will flow that time, so that they can get enuf to do the test!

Port Saga Continues…

So my personal doctor, Dr. L or G3, and his family were here last week.  He and his wife are both doctors, so I was telling them the port story.  She thought that it was a good idea from the beginning, he had to be sold – when he found out that i would be using it monthly AND they will be drawing blood each time, he got on board. 

Of course, like all things medical, there are risks.

  1. it’s a surgical procedure to insert it
  2. infection!!

They both said that the biggest risk is infection – a nurse doesn’t wash their hands and handles it could lead to that.

of course, it’s just 1 more thing about which i’ll have to deal with the insurance company…not really looking forward to that – I’ll need to decide if i want to do it this year or next year.  I already have to have an MRI done later this month to ensure that I am not at risk for the brain infection (side effect of the monthly Tysabri infusions) so who knows what more they’ll actually pay for!

ARGH!!!  Being sick truly does SUCK ASS!

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