Gilenya heart question

[Jifr]

I know there aren't a lot of gilenya users here but this is one of the best MS groups I've visited.

For anyone who is on gilenya... Have you noticed any heart issues?

I've been having what I call "my weird heart blips".   It's more intense than a heart beat skipping and sometimes I swear I can feel my heart shaking during one of the longer blips.

I'm thinking of saying something to either my PCP or my neuro about it because I'm afraid it might be related to the gilenya.

I've been on gilenya since 9/2011.

Has anyone else noticed anything?  Do you think it warrants calling the company?

Thanks for any input!

Jen

[Jifr]

Thank you all for your comments.  Like I said - this is one of the best boards around.  :-)

I did call my Neuro.  I told her about the 2 different kinds of "blips" I was having.  

She said the "shaking in your chest" feeling can be what it feels like when your heart stops.  ?!  I don't know if my heart was stopping but it was certainly very disconcerting when it happened.

She said that they know the Gilenya affects heart receptors and it was probably better just to stop the Gilenya and see if the "blips" (as I called them) stopped.

To be perfectly honest, I LOVED the ease of Gilenya but my gut told me that I should probably stop because of the weird blips that I'd NEVER had anything like them before.  Sure, I've had skipped heart beats but never anything like I was having then.  

I didn't listen to my gut feeling when I knew something was wrong after my first Tysabri infusion (and I told the doctor that - but they waived it off like it was nothing to worry about) - and when I went into anaphylactic shock on the second dose?  I was furious.  So - I learned my lesson.  My safety and life are MY responsibility.  Just because I don't fall into the "norm" - doesn't mean what's wrong isn't happening.  I have to remind my doc of that.  "Please don't ignore what I'm saying just because it's not what "usually" happens".  We already know I'm not "usual" in any way.

And that - is that.

:-)

[TLC_31]

Your "heart blips" are likely palpitations indicative of a conduction delay.

I strongly suggest you see a cardiologist. And yes, both your PCP and neuro should be aware of the situation (and they might have to refer you).

I did have heart issues while on Gilenya, although they did not present exactly as you describe. I started last Halloween and was done 19 days later.

The Gilenya (Fingolimod) Users Support Group on Facebook is an outstanding online resource.

[wildcat2x]

Hello,

I have been on gilenya since July 2011.  I have not experienced any heart issues, but as the initial dose required them to monitor your blood pressure, pulse and heart rate, any symptoms regarding the heart should be brought to the attention of your neuro. This could be related to the Gilenya or as Lulu stated something else might be going on as well.

I hope all is well.

Take care,
Wildcat2x

[twopack]

I don't take Gilenya and know very little about it but I would think any heart symptoms you experience would be worth immediate mention.  Last I heard anything about the drug on the forum it was under investigation because unexpected cardiac complications had been observed.  I'm not at all sure if the problems are connected to initial doses only or if they were seen further into therapy as well.

Thanks for the forum compliment.  We do have an active group of knowledgeable people here don't we?  It's good to see you coming through again.  Hope you are doing well other than this.

Mary