Thursday, August 8, 2013

Gilenya Day - My First Dose Experience

You may remember that back in May I chose to stop my MS treatment which was Avonex, a weekly injection, in order to start a new oral medication, Tecfidera.  Unfortunately I had some negative side effects to the Tecfidera and was unable to continue taking it.  You can read more about that here.

I met with my MS neurologist to discuss other options since I really didn't want to go back to doing injections.  Together we decided that Gilenya was worth a try.  Gilenya is another oral treatment and was actually the first of the three now available to come out.  The main reason I didn't initially choose to take Gilenya is due to the pre-testing and the first dose monitoring.

That little yellow and white pill is my first dose of Gilenya.

Prior to starting Gilenya I had to do a few different pre-tests.

First and probably most simple was blood work.  They do a liver function test (which they do on most MS treatments) and they also check your chicken pox antibody level.  Both of mine were fine!

Second, you have to have an EKG.  Again this was pretty simple.  I had to go to the cardiac unit in the hospital and the whole procedure took about 5 minutes.  I passed!

Third, you have to have a retina scan with an eye doctor.  Probably the most difficult part with this is scheduling.  I got lucky and was able to go same day as the other tests.  It was a quick scan and then exam with the eye doctor.  Everything was fine with that too!

You can read more about the pre-testing here.  All in all it was easy and like I mentioned I was fortunate enough to get it all done on the same day as my neurology appointment.

Once my neurologist got all the results back I was "cleared" to take Gilenya.  Then of course you have to play the game with your insurance company.  Fortunately the case manager at Gilenya does all the work for you.  Chelsea my CM has been wonderful.  She did all the back and forth phone calls and after my neurologist submitted a prior authorization I was approved.

Even better, because I was in the "Gilenya Go" program my co-pay is $0.  I was pretty surprised since I had been paying $25 every month for Avonex.  Free is wonderful considering how much all of my health problems cost me month to month!!

My free 2-week started kit from the Gilenya Go program.

First Dose
On the day you take your first dose you have to do it in your neurologist's office in order to be observed for 6 hours.  When I arrived this morning I with the MS nurse to have my blood pressure and pulse taken.  Then I go back into her office every hour to be checked again.  In between I've been hanging out in the waiting room.  The time has actually gone way faster than I expected.  One of my friends is here doing her first dose too (we planned to come together when we figured out we were both starting Gilenya around the same time).  In addition to having vitals checked every 6 hours you have to have a post EKG test.

My view for 6 hours!

The reason the first dose has to be monitored is b/c during trials some people had issues with their heart rate dropping too low.  So if that happens of course it is better for you to be near a doctor/hospital to receive the appropriate intervention.

For the majority of people that is not a problem.  After the first dose there are no issues.  Unlike Tecfidera this medication has no GI issues as a side effect so that is also very good news.

After today I'll take one pill each morning at home.  I'll see my neurologist again in 3 months to check in and have blood work done.  At 4 months I will have a follow up eye appointment and a repeat retina scan. 

That's it!  It probably sounds like a lot but really it isn't that bad.  Of course I would much rather use a day off from work to spend at the beach. . . but sitting in the waiting room has really been ok.  I'll take it over negative side effects. 

So fingers crossed that all will continue to go smoothly.  I'm hopeful.  More hopeful than with Tecfidera b/c with Tecfidera it is well known that there are GI side effects where as with Gilenya there really are no side effects day to day.

I'll keep you posted!

If you are considering starting Gilenya or changing MS treatments please talk to your neurologist. This is only my experience and I am no expert on the topic!  Also just because Tecfidera didn't work out for me doesn't mean it isn't a good option for you so please talk to you doctor to learn more about it! 

This is Jackson.  She also helped to pass the time while waiting today.  Jackson is my neurologist's dog.  She is also being trained to be an MS service dog.  My MS Center has a program where they train the dogs and then give them to patients who need them.  Jackson is part of the 2nd group and will actually stay with my neurologist permanently to be the MS Center dog.  She will visit with patients while they are here.  She is just now a year old and while she is very well trained for a puppy she is still a puppy!  She is sweet and lovable and it is fun seeing her while at appointments. 


  1. Yay! Congrats on making the switch. I truly hope this works well for you :) GI side effects NO FUN AT ALL...and we both know all about that!

  2. I hope this one works out well for you!

  3. well so far, so good! I hope everything turns out ok! so great abotu the copays too!

  4. Best of luck!! I hope this one does well for you! There's a great G group on facebook where you can ask questions/chat about things. I'll ask my friend Ann what it is so you can join if you'd like!

    Hope everything is smoooooth sailin'!

    (ps - husband is having back surgery Tuesday (boo) so once that's over I'll know what my life will be like so we can finally get together!!!) :)

  5. Good luck! I hope you find much better results this time around :)

  6. I saw your instagram pics though out the day and I am so excited for you. Good luck!!!!

  7. I hope all continues to go well! Be strong!

  8. Glad your experience yesterday was good-- hope this one works for you!! And aww-- what a cute dog!

  9. Jodi I'm so glad the day went smoothly for you! I was definitely thinking about you. Fingers crossed that each week goes just as smoothly, with positive results! <3

  10. Hi, I just found your blog from here:)

    Theese are my blogs, 2 in Danish as I am Danish:) They can be google translated.

    One blog is in english.

    Please pop over if you like:) I have put you on my blog reading list so I can follow you:)


  11. i hope that this medicine works! how sweet that there is a dog there!

  12. Yay! I'm glad to hear so far so good. I hope it continues that way!!