Gilenya Users: Past and Present

[sllowe]

I've started posts in the past for our DMD users so we can easily use the search feature and bump them up and add on through the years.

Please add your name here:
name:
dx:
Gilenya (date)

[cainer]

well---  i start my first dose this comming thursday!!  there is something about thursday, it seems,lol!  i had just about thought well they arent going to put me on it- lol when i got it through the mail!!  its a 6 hr. thing at hospital, just for our benifit , if something would go wrong. slows your heart but hey- maybe we will live forever with this!! ha!!  will keep you informed!

[cainer]

hi  well took gilenya yesterday- stayed for 6 hr to moniter me- all went fine! in fact my blood pressure went up -weird guess it usually goes down some. and have taken another one a few hrs ago, its a piece of cake!  no more shots!  yeh!! me!!
well is everyone thats on this doing ok? any thing maybe any of us need to know?? in 3 months i do blood work- and eye test again just to check and see everything is ok.

[Sarahsmom46]

I've been on it since February and just got my first lab results back today.  My lymphocytes were extremely low, but thankfully my WBC was low normal, but normal.  My neuro's nurse told me to be diligentabout washing hands and staying waway from sick people. That is hard to do when I take public transportation, ha!

I have found that taking my daily dose at night before I go to bed.  This was after trial and error in that when I took it in the morning I felt flu-like for several hours.  At night, I seem to sleep through all that.  

Has anyone found the gilenya support nurses very helpful?  I am happy that they don't pester you as much as the nurses at Copaxone with all those phone calls and robotic discussions, but the gilenya one just called me once to see that I did my 6-hour observation dose and that I'm filling the script.  That was it.  

How is everyone else doing?  We are in such a uniqe situation being the first group to go on the oral meds other than those people in the clinical trials, so let's try to keep the communication open. It helps us and the rest of the group who may be prescribed this med in the future.  

Also, anyone who was in the clinicals would also have mouch to contribute.to us newbies.  

Hope you all are having a nice Friday evening.

Sarahsmom

[Sarahsmom46]

I've decided to go to another MS forum that has MSers taking Gilenya. It seems we just don't have but a few people here on it.  I found a few good places if anyone who is taking it is interested.

Julie

[vidalouise]

Just got the beginning paperwork from my neuro for Gilenya. Looks like I will be starting this med soon. Here's to hoping for the best!

[sllowe]

Hi all -

Your right, Julie. Not many here on it yet. Can I ask you a favor? Can you (or any members on Gilenya) keep this discussion bumped up from time-to-time because I know we miss some who pass through and don't see it because it slips off the front page....

-Shell