Gilenya Frustration
Just a vent...or rant about Gilenya, my experience and it's pending review...
Then, one day - I had what we'll call "heart palpitations". No biggie, right? Everyone has skipped heart beats every once in a while.
But...it didn't feel like skipped heart beats. It was different. It happened every single day. It startled me but...I didn't worry about it.
One day, I had something entirely different. My heart starting what felt like it skipping several beats all at once and I could literally feel my heart shaking in my chest.
No biggie, right? I thought I had too much caffeine.
It happened a few more times over the next 2 weeks or so. I stopped drinking caffeine altogether.
One day, I was up early cleaning the kitchen and my heart started racing like I was in the middle of a high impact workout. I sat down...and it kept racing. I went upstairs, found myself nearly out of breath and told my partner my heart was racing for no reason.
It eventually slowed down and I chalked it up to doing too much. (Oh the things we tell ourselves).
It happened again. The heart shaking in my chest happened again and THEN I got concerned.
I did some reading about what I was feeling, then some reading about Gilenya and it's affect on cardiac receptors and decided right then and there that I was not going to take the Gilenya anymore. (I knew I had to listen to my body and gut because I learned my lesson after I had a truly bad experience with Tysabri. I knew something was wrong after my first infusion but the doctor didn't listen to me and guess who ended up in the emergency room after going into anaphylactic shock during the 2nd infusion? Hint: NOT the doctor).
Anyway, I called my neuro on Monday about the Gilenya. I was concerned that I might be having heart issues. She said - in a way that I wasn't sure how to take - that the "shaking" feeling could have been my heart stopping.
How...does....one...take that?
She agreed that I should stop.
Now, in doing further research, I've been reading about the people who have died of heart issues on Gilenya. GRANTED - they won't say that the Gilenya had anything to DO with the heart related deaths but they are "looking into it".
Based on my experience, I feel like it should be a foregone conclusion that the Gilenya had something to do with the deaths. However, I understand the review process and eagerly await the results.
They have pushed back the release of their results to April. They were supposed to come out with them in March so, I'm very curious as to what that means.
Did they find something adverse? Is the drug company negotiating to keep it on the market so their share prices don't drop anymore than they already have? Did they find nothing and just need to get the type face right? Are they waiting until all the other countries get on board? Is the FDA coordinating their findings with ECTRIMS?
::shrug::
This should be interesting. In the meantime...I will enjoy being off of any DMDs for a while with my fingers crossed that I don't flare.
- I started Gilenya on 9/1/11.
- My neuro left me in their waiting room for 6 hours.
- They did not check on me one singe time until it was time to go - and then she just checked my pulse.
Then, one day - I had what we'll call "heart palpitations". No biggie, right? Everyone has skipped heart beats every once in a while.
But...it didn't feel like skipped heart beats. It was different. It happened every single day. It startled me but...I didn't worry about it.
One day, I had something entirely different. My heart starting what felt like it skipping several beats all at once and I could literally feel my heart shaking in my chest.
No biggie, right? I thought I had too much caffeine.
It happened a few more times over the next 2 weeks or so. I stopped drinking caffeine altogether.
One day, I was up early cleaning the kitchen and my heart started racing like I was in the middle of a high impact workout. I sat down...and it kept racing. I went upstairs, found myself nearly out of breath and told my partner my heart was racing for no reason.
It eventually slowed down and I chalked it up to doing too much. (Oh the things we tell ourselves).
It happened again. The heart shaking in my chest happened again and THEN I got concerned.
I did some reading about what I was feeling, then some reading about Gilenya and it's affect on cardiac receptors and decided right then and there that I was not going to take the Gilenya anymore. (I knew I had to listen to my body and gut because I learned my lesson after I had a truly bad experience with Tysabri. I knew something was wrong after my first infusion but the doctor didn't listen to me and guess who ended up in the emergency room after going into anaphylactic shock during the 2nd infusion? Hint: NOT the doctor).
Anyway, I called my neuro on Monday about the Gilenya. I was concerned that I might be having heart issues. She said - in a way that I wasn't sure how to take - that the "shaking" feeling could have been my heart stopping.
How...does....one...take that?
She agreed that I should stop.
Now, in doing further research, I've been reading about the people who have died of heart issues on Gilenya. GRANTED - they won't say that the Gilenya had anything to DO with the heart related deaths but they are "looking into it".
Based on my experience, I feel like it should be a foregone conclusion that the Gilenya had something to do with the deaths. However, I understand the review process and eagerly await the results.
They have pushed back the release of their results to April. They were supposed to come out with them in March so, I'm very curious as to what that means.
Did they find something adverse? Is the drug company negotiating to keep it on the market so their share prices don't drop anymore than they already have? Did they find nothing and just need to get the type face right? Are they waiting until all the other countries get on board? Is the FDA coordinating their findings with ECTRIMS?
::shrug::
This should be interesting. In the meantime...I will enjoy being off of any DMDs for a while with my fingers crossed that I don't flare.
Comment