Gilenya question

[daisy.girl]

I just took my second dose of gilenya today, and I feel as if I am on speed. My heart is racing (I can feel it beating loudly) and I am very shaky!
Anyone else have this happen?

[cainer]

ahh  daisy-  ya need something-- i too have them jerks- and tremors- bad- but-  meds  do help!!      dont do nothing-please-   hang in there!! hugs big hug-- ?

[daisy.girl]

I failed on tysabri, My neuro said no to beta or rebif, due to the increase risk of allergic reactions (I have a long list of medication allergies).  Avonex, maybe....but I have seizures and take seizure meds, so it may be a no go too.

My neuro wanted me to look at Novantrone, but after looking at it, I will not use it....just not for me.

So, that leave Copaxone or nothing. I am leaning to the nothing at this point.

I hate this disease!!!

[opie74]

It took two weeks, and then the cardio went back to normal for me.  I was hopeing the same for you!

[cainer]

gosh- i hate that i was so hopeing the best for people!! well i do want to add my dr has quite a few on it and i was the only one that is weird-lol  just cant take it-  maybe a lower dose we could take? so daisy girl- are they starting back on anything?

[daisy.girl]

Well, I can't take it either. I tried one more dose after two days off, and within 1 hour my face was red and flushed, my chest was tight (squeezing) feeling, and I was nauseous. I had the horrible feeling of shaking and my hands were tremoring.

[cainer]

hi- well i was on gilenya for well starting the 4 th month-  im one - the one per cent that cant take it! i am still mad about it- i wanted to do this so bad!  it affected my white blood cells- urgg-  they took me off it- and my counts comming back up- so oh yeh id take it at night too that helps- but  dont guess i can do it-   hugs!!

[daisy.girl]

I called my nurse navigator and she took down all my symptoms and told me to call my neuro. Well, they told me to stop the gilenya for two days and see if the symptoms go away, and then take it again on the third day to see if the symptoms come back.

I am afraid they are going to make me stop altogether, when I really just wanted to know if these symptoms will pass and I can continue to take it.

I did find the FB page......

thanks so much :)

[daisy.girl]

thanks Julie :)

[Sarahsmom46]

I have been on Gilenya for almost 6 months.  I haven't experienced the breast tenderness or burning eyes, just mainly hair loss for the first 4 months and then that went away.  The other symptoms we talked about earlier went away after the first week.  

Do you have the phone number for the Nurse Navigator with Gilenya?  If so, you may want to call them and document your symptoms.  They keep a database of the symptoms people are having and can either say your symptoms are common (I highly doubt that) or tell you that they are NOT a side effect.  Either way, it would be good to touch bases with them.  

I hope switching to nightime will be the answer to dealing with the strange symptoms.  One more thing...There is a Facebook group that was started by a patient called simply "Gilenya Users Support Group" or something to that affect.  If you are on FB and want to check it out, just google it.  I found the group helpful in the beginning, but don't need it so much anymore.  I hope you get a chance to look into it.

Be well and good-luck with this med.

Julie

[daisy.girl]

thank you....

I already thought I would try taking it at night tomorrow. Two other things I have noticed: my eyes burn, and I am having pain in my breast. Not sure if anything to do with the Gilenya, but I did not have either of these before yesterday.

Thanks again....how long have you been on it? Have your labs continued to be okay?

[EMERALD37]

i AM FEELING THE SAME ITS MY 3RD DAY AND I AM TRYING TO WORK BUT STRUGGLING

[Sarahsmom46]

I felt the exact same way.  That feeling finally wore off about a week or so later.  I highly reccommend taking it at night before you go to bed if that will work for you.  You will sleep through the majority of the side effects.

Julie

[EMERALD37]

IVE BEEN TAKING GIENYA FOR 3 DAYS AND NOW MY HANDS ARE SHAKING IS THIS NORMAL