A good Gilenya experience

[janms]

When I was deciding about Gilenya I did a lot of searching online for people's experiences and ended up terrified because of all the negative reports. Now that I've been on it a couple of months, I decided that as a "public services" I should post my experience.

I work in the dental field and I've noticed that root canals have gotten a bad reputation, mostly because no one bothers to tell their "good root canal" stories so the only thing people hear is the bad stuff. I'm here to tell you that root canals aren't all that bad, and Gilenya is great.

I had a slight drop in pulse and BP at first, but not enough to notice if I wasn't actually taking my pulse, and I think that has gradually returned to normal. Other than that, I haven't noticed a single other effect. I'm very fortunate in that if it weren't for those pesky MRIs, I wouldn't even know I had MS, so I can't weigh in on Gilenya improving how you feel, but popping a pill every morning and just getting on with life has been nothing short of a miracle especially after what I went through on Rebif.

I just wanted to put that out there for anyone else who is worried about starting, and I'm sure there are lots of others out there who are having good experiences and not saying anything about it.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[just4jaden]

That post came right on time for me! I have been soo freaked out about the idea of taking this medication; as a matter of fact, I cancelled my appointment to take my first dose because I was so scared(not smart, but I needed to take a break and let the thought sink in).

So thank you so much for letting me know that it is totally possible to be on this medication and not have your whole world turned upside down.

[nerako]

good to hear! There are other posts about the good experiences on Gilenya just not as many as all the questions people have about it. I too have had a good experience, been on it since Feb 2011. Uneventful first dose and no major side effects. I had a relapse 3 months after starting but none since. I also experienced no changes in 12 months on my MR, so no new lesions. How awesome is that!

[JerryD]

I appreciate you folks writing something positive about your experiences with Gilenya. I hope to see more. Good luck

[MissMichelle]

I'm waiting for my insurance company to approve Gilenya...*fingers crossed* Thank you for posting your positive experience. I feel a little better about taking it

[Linus01]

LOVE TO HEAR GOOD NEWS ABOUT A DRUG. I THINK I MAY SWITCH FROM REBIF TO GILENYA. I HAVE ONLY BEEN ON REBIF ABOUT 6 MOS BUT I AM HAVING A FLARE UP. MAYBE GILENYA WOULD BE A BETTER FIT FOR ME. ANYONE ELSE OUT THERE HAD GOOD LUCK CHANGING FROM REBIF TO GILENYA?

[Brass]

I'm waiting for my insurance company to approve Gilenya...*fingers crossed* Thank you for posting your positive experience. I feel a little better about taking it

I'm also waiting on my insurance company (Aetna....they're a nightmare) approving Gilenya, i got my blood tests & EKG today so here's hopling i get the all clear to take Gilenya.

[BikeChik]

I switched from Rebif to Gilenya last year and so far I am happy I changed DMD. My heart rate did not drop at all during the 6 hour observation. I was really worried about eye issues since I have vision problems but I have had two good exams. My last MRI in September showed no enhancing lesions.

[BikeChik]

I forgot to mention that I do get lower back pain intermittently which I never had before Gilenya, but that is my only complaint so far.

[MissMichelle]

Approved!

Got the call on Thursday that Gilenya was approved! Novartis will pay the copay for one year...after that I'm on my own I guess.

14 day trial pack going to Neuro office by Tuesday...hopefully will have first does on Friday. I wish all of you luck!

[ovifan08]

I just posted a new topic about my first does experience. Its waiting to be approved, but in short....it went extremely well for me. My heart rate and BP did not drop at all and I am feeling perfectly fine. One week in and all is well!

[newbie but goodie]

Miss Michelle- they are letting you take your fist does at your neuro? Lucky! I have to go to a center hours away from where I live. So annoying, especially since they will make me go inpatient if my heart rate drops under a certain amount.

Thank you to all the posters that had some positive feedback!

[Brass]

I was administered my first Gilenya pill yesterday, went to the clinic for 0830, had EKG done, blood pressure & heart rate checked and took the pill at 0920. They then checked my BP & HT rate every 15 mins for the first hour then they checked my BP & HT every 30 mins for the remainder of the time. Once the 6 hours monitoring was over i got another EKG, the Dr checked the results and i was out by 4pm.

My heart slowed slightly but it was still within the "normal" range apart from that no other issues. I took the 2nd pill today and agin no issues. Just hope it works unlike the Copaxone i was on previously.

[CptsWench]

Thank you,

I am waiting for approval right now. Switching from Copaxone to Gilenya as soon as I get the call. Been reading up on it all day and finally came here to get first hand info. I have a usual low BP to start with so I am a bit concerned. But my neurologist is aware of this and I trust his judgement. I will get to take my first dose right at his clinic, so he will be right there with me. I like that too. I feel better no after reading your post. Thanks again.

[ovifan08]

@Cpts....my heart rate and BP were not affected at all so hopefully you experience the same. I was just glad i wasn't hooked to a heart monitor because i would be watching that thing like a hawk! The nurse just came in every 15 minutes at first...then 30 minutes, did her checks then left. Before i knew it, I was back at home.