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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Gilenya

Gilenya

Being taken off of tecifidera due to white blood cell count too low. Okay team and friends let me know the good and the bad of gilenya. Thanks

A MyMSTeam Member said:

I don't think I've had any serious symptoms on gilenya and I've been on it for two years. I've had symptoms that may or may not be related to it but when you take so many other medications and you have MS progressing I don't have anything that stands out as a sore thumb shouting I'm Gilenya!. I did OK with the heart monitoring the day of starting a medication but some don't. It has fairly recently been linked to having issues if you're positive for the JC virus but it's a lot better then the other medication alternatives from what I've read up on. I personally think it's been pretty easy on my system and I just take one pill at night for a go to bed. I will say it is always had my white blood cell count a lot lower on the spectrum of acceptable but my white blood cell count is never bottomed out Some of the horror stories I've heard about copa... or Techf.. Gilenya sound heaven sent.

posted about 6 years ago
A MyMSTeam Member said:

Oh and Gilenya has a program for help with the copay. And lots of grants they can look for for the copay too. They really work to get that cost covered as much as possible Which is awesome. Especially since I have both my husbands insurance AND Medicare and my copay is $500 for a three month supply (my husbands max out of pocket for specialty meds) because Medicare wants to charge $750 for just one month because they've decided that they will charge me as if they are primary when they are and can only BE secondary. Gilenya got me a grant that covers that out of pocket from my copay. AND if you can get the doc to write a three month supply script like I did it's "cheaper" since most insurances have a max out of pocket they can charge for a script.

edited, originally posted about 6 years ago
A MyMSTeam Member said:

No complains here i have been on it for 6 months and all has been great.

posted about 6 years ago
A MyMSTeam Member said:

I've been on Gilenya for 4 years, no noticible side effects. My MRIs are good too. No complaints here 😃

posted about 6 years ago
A MyMSTeam Member said:

Was on it for a week and had every side effect possible while on it. Now 4 months on LDN and loving it. NO side effects and no more daily MS symptoms.

posted about 6 years ago
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