Gilenya

[MSFlea]

Anyone have experience with Gilenya?

My insurance denied Kesempta💔, one of their criteria for approving it is I have to have tried one of two other, less effective DMT's first, and Gilenya is the better of the two they listed according to what I've researched (the other is Tecfidera, which is a pill, I have absorption issues, so it wouldn't do me any good to try it). I don't know what to do about the insurance denying the Kesimpta other than doing what they want, trying Gilenya and seeing if I do okay on it or not. The whole reason I'm starting a DMT is to slow progression and I've read that Gilenya is not very good at that... so I'm really nervous about starting it. Plus one of the side effects is low heart rate, and I already have that...

Would love to hear if you've been on Gilenya and what your experience is. Or if you've fought insurance to try the DMT you wanted first and how that went.

[Hidden]

Gilenya was my first experience with DMTS I was afraid of self injection, so I tried gilenya and had heart issues within a few months so didn't work for me

[MSFlea in reply to Hidden]

Is Gilenya a pill or an injection?

[Hidden in reply to MSFlea]

Gilenya is a daily pill

[MSFlea in reply to Hidden]

Ah! Thank you for letting me know! That means I can't take it because of the absorption problems I have! That will help with appealing to the insurance company!

[kdali]

Kesimpta may still be covered under the drug company. I would call them and explain that you want their drug, but insurance denied it. I took it when it was first approved, and they paid the out of pocket my insurance would not cover. This is fun to do at the beginning of the year, because then your out of pocket deductible is met early 🎉

Often times a neuro will appeal an insurance decision to get something approved. This takes time, and sometimes several appeals. I have watched a lot of people being able to get approval for Mavenclad lately, as a first time med. For some, the drug company has directly sent the medication for free when all else failed. Don't give up yet.

I agree with your thinking that going with the most effective treatment first is better for outcomes. This doesn't mean the one at the bottom of the high tier list isn't as good or won't be as good in your body. Real world experience is different than drug trial data. The heart rate thing would give me pause, and there are plenty of medications that don't do this.

I believe the assistance program for Kesimpta is called Alongside Kesimpta.

[MSFlea in reply to kdali]

My neuro is going to appeal... I'm thinking of starting the Bridge Program, that gives you a year free of Kesimpta, if my neuro thinks he can win an appeal with them

[kdali in reply to MSFlea]

Hooray! 🎉 They may go ahead and send out the starter doses also.

[MSFlea in reply to kdali]

That would be awesome! I've got to send a message to my neuro today, so hopefully they have put in the paperwork for the Bridge Program!🙂

[Jesmcd2 CommunityAmbassador]

Here is Kesimptas resource site kesimpta.com/savings-and-su...

🤗💕🌠

[MSFlea in reply to Jesmcd2]

Thank you

[CatsandCars]

I took Gilenya for four years and I was happy with it. No slow heart rate or anything, and my MRIs were stable. I only stopped because my white blood cell count got too low.

[CatsandCars in reply to CatsandCars]

I should have also said that I do think you should appeal. Yes, I liked Gilenya, but your doctor thought Kesimpta would be his first choice. It's good to do everything you can to better your chances with MS! I don't like giving in to insurance companies just on principle, either. 😁

[MSFlea in reply to CatsandCars]

And I'm getting my doctor to appeal it. I really would like to go with Kesimpta

[MSFlea in reply to CatsandCars]

That is good to know. If it comes to it, I'll give it a try.

[CatsandCars in reply to MSFlea]

I missed the part earlier when you said you didn't want to take Tecfidera because it's a pill, but Gilenya is also a pill. I'm sorry I didn't see that sooner!

[Helpmeup]

Hi MSFlea, I agree with kdali on this. Instead of going through insurance, you might have better luck going through Novartis (the drug manufacturer) directly. Novartis has a great patient assistance program, Alongside Kesimpta. You can get their contact info on the Novartis website. I was on Kesimpta last year, and the Novartis people were extremely helpful. They worked with my neurologist to get a prescription sent directly to them, and I was shipped a three month supply immediately. Good luck! 🤗

[MSFlea in reply to Helpmeup]

Thank you! I'll call my coordinator from Kesimpta and see what we can do!

[BettysMom]

Isn't Gilenya a pill also, like Tecfidera?

[MSFlea in reply to BettysMom]

I don't know... if it is, it won't work for me. I can't find anywhere whether it is one or the other

[CatsandCars in reply to BettysMom]

Yes, it is.

[Msstinks]

It seems to me that you have conditions that make taking the Tecfidera or Gilenya disqualifying choices over the Kesempta. Have your doctor contact the insurance company explaining this. Fight for what you need! That being said, I’ve taken Tecfidera with terrible side effects, and I’ve taken Gilenya…..which I did fine with.

[MSFlea in reply to Msstinks]

Thank you! It is good to know that you had didn't have bad side effects with Gilenya... I'm still going to appeal, but I don't know what will happen, hoping my neuro can get the Kesimpta approved.

[cljones]

Gilenya is a pill so if you can't take pills it would do you no good. NoNovartisvartis has an excellent patient assistance program. I get my Mayzent from them at no charge. So if you check with the company and your income is low enough you should have no problem getting it at no charge. I'm sure your doctor can help you with the assistance you need. Because even if your insurance won't cover it if your doctor wants you on that he can check with the drug company itself to get assistance to get it.

[MSFlea in reply to cljones]

That is good to know, thank you! I just sent a message to my neuro letting them know which DMT's the insurance wants me to try first, and why I can't take them. Hopefully they will use that in the appeal. Fingers crossed. I'm trying to get on the Bridge Program from Kesimpta, that would give me a year free, and hopefully give the neuro enough time to keep appealing to my insurance for the Kesimpta.

[LStelly]

I tried Gilenya for about a year after using copaxone for about 12 years. Had very bad experience. Severe headaches , nausea, hair loss and over all tired. Also had heart palpitations. Just wasn’t a good experience for me

[MSFlea in reply to LStelly]

I'm so sorry to hear you had such an awful time with Gilenya! 🧡I'm really hoping I won't have to try it. Appealing the denial, and keeping my fingers and toes crossed that it will go through and I can start on Kesimpta instead of having to try something with lower efficacy.