Taking the oral plunge tomorrow and scared

[janine01]

The copaxone is not helping the amount of lesions in my brain. My neuro wants to try the new oral that has come out by Gilenya. My insurance plan does not cover Avonex or the other betaseron's. I don't mind since they make you feel horrible anyway. I'm taking a chance on the new drug. I have had my liver function test and eye exam. Tomorrow I take my first dose and sit all day to be observed. I admit I'm scared but this may be my only alternative. Every MRI I get has many new lesions, however very little symptoms.

I wonder if anyone else has tried this new drug yet?

Janine

[janine01]

Thank you for your comments. Day three now and still no side effects. I certainly don't know yet about long term effects, but will keeping having eye and liver tests. Taking daily oral pills has been a welcome relief. New Mri in 3-6months for a new check.

I sat in a private exam room for 6hours with blood pressure check every hour or so. The warning label states some people may have slow or rapid heart rate in the 1st six hours. Of course every med has potential warnings and they don't happen to everyone. I did not have any issues at all. While I waited during the time in the office I brought magazines,books and there was a T.V. to watch. It wasn't bad. Worth the wait for me.

I will keep posting after each check with my results. Again thank you everyone for your support. By the way Gelenya is more than willing to help with insurance, I'm sure to get more people to try it. I'm good so far for 1year.

Janine

[Sarahsmom46]

I will also be going on Gilenya just waiting for the insurance issues to be worked out.  

Like yourself, I had new lesions from my last relapse in January.  I have had 2 relapses while on copaxone so my neuro also decided to skip the interferons and gave me the choice of Tysabri or Gilenya.  We both decided to keep Tysabri in our back pocket in case Gilenya didn't work out for some reason.

So, tell me...How did you spend those 6 hours waiting?  I need some ideas in how to occupy my time ore else I might get into some mischief.  LOL!  

I'd definitley be interested to see how you are doing after a week and two weeks after starting.  I am a bit anxious right now about taking this new drug but also excited to not have to do injections anymore.  Hooorrray for that part.  

Keep sharing your experiences if you feel comfortable doing so.  The information will be very helpful for me and others as well.  Thanks for sharing this information in your post.  

Julie (Sarahmom)

[daisy.girl]

Is Gilenya a daily pill??  What are the common side effects?

[Guitar_grrrl]

Good Luck, Janine!

[doublevision1]

Thanks for the update, glad it was an uneventul first day on this med,  Like others here, will be watching your posts with interest and hoping for a good outcome with minimal side effects.  

[janine01]

Thank you for your support. It went well today. No side effects today. Boring just sitting around the dr's office though for 6hrs. I am going to keep monitoring the liver tests and new MRI in 3-6 months.
Novartis is paying for the drug and I am paying a co-pay. My insurance only covers Copaxone. So given the choice I decided to try the new pill. If this doesn't work then maybe sign up with the once a week drugs. I'm hopeful this time.
Thank you all for your comments and support.

Janine

[addicted2harleys]

I don't have any experience with this.  Heck, I am not even dx'ed yet!  Lol. But I did want to wish you luck with this and hope that it is the answer for you!

Addi

[rendean]

Dear Janine,

Gilenya is probably the next drug I am going to try. I do wish you luck as you start on this journey.

Please keep us updated on how things go.

With positive thoughts,
Ren

[michelleric]

Janine,
Wishing you well with the new oral med.  Like Daisy girl, I was given the options for Tysabri and Gilenya.  I will be doing Tysabri, for 1 year.  If not doing what it "should" be doing, I will then most likely start Gilenya.

Hope it will decrease your lesion load, and help you,
Michelle

[sllowe]

Shoshin was on it in clinical trial - she did well with it.

Here is a few  discussion from the past:

http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-tidbits/show/1422642

http://www.medhelp.org/posts/Multiple-Sclerosis/Fingolimod-clinical-trial-update/show/550420

http://www.medhelp.org/posts/Multiple-Sclerosis/Fingolimod-FTY720-Enhances-Remyelination-Following-Demyelination-/show/1238285

[sllowe]

Janie,

Hi Janie. Wishing you well with the new med. Hope all goes well and it stops those new lesions. All you can do is try! I'm proud of you for taking the plunge!

On another note, amazing the ins. doesn't cover the beta or avonex but it does the new...hmmm, believe it's at least 3x as expensive! In your case - it best be worth it!!!

Let us know how you make out!
-Shell

[daisy.girl]

You will be in my thoughts today!

I had to choose between Tysabri and Gilenya just a few months ago. I had 5 additional lesions on my lastest MRI (just 9 months from the first that showed 10 lesions)

I was just where you are on Monday. I had my first Tysabri infusion. I was scared too, but it was not too bad at all.

I will be eager to find out how you do....Gilenya is choice for me too. I have only agreed to have the Tysabri infusions for one year; then may change.

[HVAC]

I was just talking to someone starting Gilenya. With your situation it makes sense. I know it is scary but it sounds like they are doing the right things in monitoring you. I will be wishing you well tomorrow. For anyone it is a matter of benefit/risk. In your case it may well help a lot.

Alex

[janine01]

Thank you for the information. Gilenya is also paying for 1 year to start. I would like to try this and see how it pans out first before having another switch.

[MsmsinFl]

Best of luck tomorrow!

Just so you know, Rebif (MS Lifelines) has a program that pays all but $50 per month for Rebif.  No income restrictions, no application, no time limit, and works even if you have insurance -- just call & ask for it.  I just got into the program a month ago -- really could NOT believe I won't have to pay for it!  The one limitation is that your insurance cannot be via the government (like Medicare etc).

I'll also say that I've been on Rebif for 18 months with no flu-like symptoms or other bad effects, and no relapses -- but everyone is different.

(I know this sounds like a commercial for Rebif -- it's really not -- but if it turns out that you need another option, might be helpful info)



Worth looking into, if Gilenya doesn't work for you.