Medicare Part D and Gilenya

[Flowers17]

Hi all, hope all are enjoying this transition from Summer to Fall. Leaves are starting to turn beautiful colors of red, orange, rust, and yellow. Simply beautiful. My question today is related to Medicare Part D and open enrollment. I just realized that the Medicare Part D insurers will no longer cover the Brand drug Gilenya. Instead they are only covering its generic form, fingolimod. Have any of you transitioned from Gilenya to fingolimod and if so, how are you doing and how do you feel? Has it produced any untoward reactions? Would love your feedback. Thank you all and be well.

[hairbrain4]

Check with the drug company that makes Gilenya to see if you qualify for help from them. I had the same thing happen to me last year with Vumerity. I applied & they cover all of it.

[Flowers17 in reply to hairbrain4]

Thank you for this recommendation. I had previously applied for assistance but don't qualify. Appreciate the information.

[1575]

You or may not have to change from Gilenya to generic because of cost or plan best bet is to run all your prescription drugs on the medicare.gov site just click on find a Part D plan enter your zip code you may also add the pharmacies you prefer after you have listed all medications click on find a plan Medicare will list all available plans available to you listing the least expensive to the most expensive broken down by year/monthly and if you click the correct box by drug. I live in Indiana and this year there are I think something like 20 different Part D plans available but typically the first five are all within $50 a year of each other if your insurance agent does not represent the plan, you have chosen call the company. I run my prescriptions every year trying to lower my costs.

[Flowers17 in reply to 1575]

Thank you for your response. It was when I was going through the Medicare Part D plans that I discovered that Gilenya was not covered. Then I called the company that currently supplies me and they said that Gilenya was no longer on the formulary but fingolimod was. Then I called Medicare and they confirmed that. Appreciate your information.

[cljones in reply to 1575]

I do the same thing. Every year I have to change my part D Insurance it seems like. Because the costs always go up the next year. But that's okay it's not really a problem except having to get my doctor to send out prescriptions to different Pharmacy that is number one.

[cljones in reply to cljones]

I haven't been on Gilenya for a couple of years. So I don't know about the generic. But most generics work the same. I'm taking the generic of Amprya it's dalfampadine and I've had no side effects from it. So best thing to do is try the generic and see how it works. I'm sure your doctor can give you good advice on this.

[sapphire65]

I have been taking fingolimod for 4 years now. It comes in a Gilenya bottle! but the prescription says Fingolimod! It has been a great med. I have had NO side-effects. Hope this helps.

[Flowers17 in reply to sapphire65]

That is amazing and incredible. This response gives me hope. I also called my neurologist's office and they informed me individuals have been transitioning to fingolimod and have been doing well. I will go through the Medicare Part D plans to see which plans cover fingolimod and which plan is the best for me. Thank you so much. Really appreciate this information and yes it does help.

[GoingDownFighting]

Sorry late to reply. I am not eligible for medicare yet (and admittedly do not know much about it) but when gilenya became available in generic form my health insurance also stopped covering it but they did cover the generic (aka fingolimod). I was on the generic version for about a year and a half before i had to discontinue it to start treatment for my CLL. There are several sites that assist with drug costs - pretty easy to find with a google search. I also found my neurologists nurse was very helpful in navigating finding assistance. I did not have any known side effects from switching from the name brand to the generic. However, it is possible that the drug caused my CLL (which on the drug sheets is listed as a possible side effect but it was not listed when i 1st started Gilenya in 2018). Sorry i am not much help! GDF

[Flowers17 in reply to GoingDownFighting]

Thank you for taking the time to respond. Your response is very helpful and gives me something else to check into and think about. Also, so sorry to hear about your diagnosis of CLL. Thanks again for sharing your information and I hope your treatment is successful.