So, today is my fourth day on Gilenya. I've been keeping a journal on my iPad so that I can tell my Neuro exactly what's been going on. This is all copy & pasted, so it's a little weird, but I just wanted to put what I've experienced so far
"Day 1, the monitoring day, was boring as all get out, but I see why they do it. My heart rate and blood pressure did go down, but nothing scary, just so exhausted. Got in bed later on that evening and once my head hit the pillow I got the worst headache I've ever had in my life! Had to hop in my truck to get some Tylenol because I don't even keep that around the house. After the Tylenol kicked in I went back to bed. BUT, I was having a hard time breathing, so I used my Albuterol INHALER! I had no idea that there could be a bad interaction between the two meds! Well, I didn't die, so no biggie I guess. It still would have been nice if someone let me know!
Day 2 I was afraid to take the Gilenya pill....I literally cried while I was taking it out of the Rubik's Cube packaging (a pill bottle would be nice). This was a pretty decent day, super exhausted, but no headache!
Day 3 Beginning to wonder if this pill has thrown me into some sort of flare-up...whatever the heck that means. My normally numb hands are tingling like they're on fire! I just want to crawl in a corner and die!
Day 4 I guess I need to make sure I drink LOTS of water and go to bed early enough because today has been a pretty "normal" day...I even wore heels to work! I can live with feeling like this every day. It's not my 100%, but it's better than the last few days! Maybe it's the huge Starbucks and 5 Hour Energy I drank today...who knows."
As you can see, every day is very different....as are all of US different. I think my biggest hang up is that all the pills (supplements) I take are things I WANT to take. Until Gilenya (or birth control lol), I have never had anything that I HAD to take on a daily basis. I find it funny now that I didn't even have Tylenol in my house...and I have two teenagers! We've all been very healthy....thank God!
I'm hoping this Gilenya goes well for me....I work a lot and having this wonderful illness makes THAT hard enough all by itself!
Please be sure to ask lots of questions, write them down if you need to. Mention ALL meds you are taking! I know how fun it is to try to remember things these days...thanks MS! I'm pretty sure I didn't mention the inhaler, and even though I don't use it often, I do have asthma....it has to be in my chart somewhere. They don't just sell those at Circle K!
Another thing....READ READ READ! There's some scary stuff out there when reading about this drug, but you just have to weigh your options I guess. If you've been around the MS block a few times, it may not be so overwhelming. But for the newly diagnosed, it's almost obsessive!
It takes A LONG TIME to start treatment, or maybe it just seems like it to me. I was first diagnosed December 9, 2015. I had all necessary tests....bloodwork....eye tests...blah blah blah within the first month...My Dr AND ins co approved me to start it January 15,2016....didn't take my first dose until April 27, 2016...Maybe that's normal, but since I've never had to deal with doctors like this it seems like it took forever. On top of the fact that you have to on everyone's case every step of the way!
Ok, now I'm just rambling...it's WAAAYYY past my bedtime....I hope I don't pay for this tomorrow!
Take care all!
"Day 1, the monitoring day, was boring as all get out, but I see why they do it. My heart rate and blood pressure did go down, but nothing scary, just so exhausted. Got in bed later on that evening and once my head hit the pillow I got the worst headache I've ever had in my life! Had to hop in my truck to get some Tylenol because I don't even keep that around the house. After the Tylenol kicked in I went back to bed. BUT, I was having a hard time breathing, so I used my Albuterol INHALER! I had no idea that there could be a bad interaction between the two meds! Well, I didn't die, so no biggie I guess. It still would have been nice if someone let me know!
Day 2 I was afraid to take the Gilenya pill....I literally cried while I was taking it out of the Rubik's Cube packaging (a pill bottle would be nice). This was a pretty decent day, super exhausted, but no headache!
Day 3 Beginning to wonder if this pill has thrown me into some sort of flare-up...whatever the heck that means. My normally numb hands are tingling like they're on fire! I just want to crawl in a corner and die!
Day 4 I guess I need to make sure I drink LOTS of water and go to bed early enough because today has been a pretty "normal" day...I even wore heels to work! I can live with feeling like this every day. It's not my 100%, but it's better than the last few days! Maybe it's the huge Starbucks and 5 Hour Energy I drank today...who knows."
As you can see, every day is very different....as are all of US different. I think my biggest hang up is that all the pills (supplements) I take are things I WANT to take. Until Gilenya (or birth control lol), I have never had anything that I HAD to take on a daily basis. I find it funny now that I didn't even have Tylenol in my house...and I have two teenagers! We've all been very healthy....thank God!
I'm hoping this Gilenya goes well for me....I work a lot and having this wonderful illness makes THAT hard enough all by itself!
Please be sure to ask lots of questions, write them down if you need to. Mention ALL meds you are taking! I know how fun it is to try to remember things these days...thanks MS! I'm pretty sure I didn't mention the inhaler, and even though I don't use it often, I do have asthma....it has to be in my chart somewhere. They don't just sell those at Circle K!
Another thing....READ READ READ! There's some scary stuff out there when reading about this drug, but you just have to weigh your options I guess. If you've been around the MS block a few times, it may not be so overwhelming. But for the newly diagnosed, it's almost obsessive!
It takes A LONG TIME to start treatment, or maybe it just seems like it to me. I was first diagnosed December 9, 2015. I had all necessary tests....bloodwork....eye tests...blah blah blah within the first month...My Dr AND ins co approved me to start it January 15,2016....didn't take my first dose until April 27, 2016...Maybe that's normal, but since I've never had to deal with doctors like this it seems like it took forever. On top of the fact that you have to on everyone's case every step of the way!
Ok, now I'm just rambling...it's WAAAYYY past my bedtime....I hope I don't pay for this tomorrow!
Take care all!
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