FDA Warns of Possible Dangers of Stopping Gilenya

[bxrmom]

Just received this email today:

The FDA issued a safety alert saying that this only happens rarely, but when it does, the disease could become “much worse than before the medication was started” and “result in permanent disability.” The FDA’s alert doesn’t provide details, however, about how rare these problems are.

More on the website:

multiplesclerosisnewstoday....

[jimeka]

Thank you for posting this Jessie, it is very informative Blessings Jimeka 🦋

[rjoneslaw]

When I told my dr that I don't do injections I had to decide between gilenya and tecfidersa. I read the inserts that they give for the medication and I knew after reading the insert for gilenya that it wasn't for me there was to many side affects.

Tecfidersa has worked great for me. I haven't experienced any side affects. I have improved a great deal but I still have a ways to go.

[Allen5280]

Gilenya did horrid things to my body. I wasn't I'm not very long but documented it with pictures. My facial hair has never recovered back to the same after. I dont bring it up much due to my hypersensitivity, that and Tifecdera was prior and I felt as if I were dying on it so... I wonder where to find that info about the ordeal? Are their links in the article cause I saw it on MS news today and just briefly scanned over it.

[bxrmom in reply to Allen5280]

I really didn't see any links in the article Allen5280 I'm sorry you had such a bad experience with Gilenya and Tecfidera

Jessie

[Allen5280 in reply to bxrmom]

Thanks to my heredity I'm hypersensitive to medications. It's not if I will get side effects it's a question to how severe the side effects. Copaxone was not much better but at least I didn't have nasty sores and hair loss all over my scalp and face. May be directly related due to it also dropped my WBC count dramitacally

[bxrmom in reply to Allen5280]

I'm sorry to hear you are medication sensitive to a lot of meds. I was on Copaxone from the start of my dx in 2006 and stopped it about a year ago and switched to Tecfidera. I was tired of the injections (I went from daily to 3 times a week) but was still running out of locations to be able to do the injections and wanted to stop. So far so good with the Tecfidera.

Jessie

[Jesmcd2 CommunityAmbassador]

Gilenya is the only DMT approved for pediatrics, so I wonder how that's going to affect them.😞 bxrmom although the from what I read the risks are low? 🤗💕

J🌠☃️

[bxrmom in reply to Jesmcd2]

I hope that it does not affect pediatrics as bad as it does some adults. I have not seen much on pediatrics, just that it was approved for the use.

Jessie

[Iona60]

I had two relapses on gilenya and had to stop.i had a six week wash out before starting ocrevus. I felt better in those 6 weeks than I have felt in the 13 years I've had MS. I understand why since people choose no DMT s.