Changing meds.

[cljones]

My doctor wants me to change to Gilenya and I have read the side effects and it worries me. Has anyone had any of these side effects? I have been on Copaxsone for 3 years and no side effects. So it worries me. I haven't had to have any monitoring but I read that you have to have monitoring on Gilenya. I welcome any information that can be given.

[Juleigh21]

cljones I have never used gilenya, but it is my understanding that it is one of the stronger/more effective MS meds. Discuss your concerns with your doc and if he still feels it's the best fit for you, I'd say go for it. Good luck!

[cljones in reply to Juleigh21]

Thanks for answering me. I have been a little worried about trying it. I will check with my doctor. I have only tried Copaxone. I won't be sad to quit the shots.

[Nom_De_Plume]

@cljones

Hi 👋🏼

I've been on Gilenya for 4 years and have had no side-effects to speak of. Blood work is done every 6 months to check liver enzymes, yes, but I haven't had any problems.

Your absolute lymphocytes (part of your WBC count) will go down but that shows the drug is working and I don't think of it as a side-effect. It is a measure of the *circulating* lymphocytes. Gilenya "sequesters," if you will, the lymphocytes to the lymph nodes. This keeps them from being able to damage the nervous system. (Gilenya doesn't actually destroy lymphocytes.) Anyway, that's a long-winded way of explaining one aspect of lab work that changes with Gilenya.

Personally, I was thrilled to come off of injectables! 💉😬

[cljones in reply to Nom_De_Plume]

Thanks it nice to know someone who has had it with no side effects. When you read all the stuff about it it is kind of scary. It made me think do I want to try this.

[cljones in reply to Nom_De_Plume]

I won't be sad to get off the injections. They always kill my arms because they are thin. Did you have to be monitored for 6 hours after your first dose. How did that work? Was it just in the doctors office or what.

[Nom_De_Plume in reply to cljones]

Hi @cljones ,

BTW, when you reply, start with

"@" and the person's name (no space) if you want them to know you've replied, or if you want them to answer you.

Yeah, the monitoring the first day was no big deal. They took an EKG first and I think one at 3 hours and another at 6 hrs. I had my own room at the doctors office and I just hung out and read things that I had brought or worked on my laptop. I had no cardiac issues.

[cljones]

Nom_De_Plume

[cljones]

Hi@Nom_De_Plume sorry I am new and didn't know the proper etiquette. Thanks for letting me know what happens. They have scheduled the eye test for Sept 6.I am waiting for them to schedule the blood work, Ekg and Echocardigram. So I will see how it goes.

[Nom_De_Plume in reply to cljones]

@cjones You're doing just fine with this forum! 👍🏻 Someone had to tell me too about the "@" part.

Your team is very thorough! I didn't have a baseline eye exam but was just advised to have an eye "checkup" 6 months after starting. I also didn't have an echocardiogram done. Not sure why that's necessary unless you have some cardiac issues to start with. If not, they're being thorough which is always a good thing. 😊

Feel free to private message me here as you go forward with the Gilenya.

[cljones in reply to Nom_De_Plume]

@Nom_De_Plume thanks I don't have any health issues that I know of but the MS. HA! HA! I guess they just want to dot all the I's and cross the T's.

[Nom_De_Plume in reply to cljones]

@cljones That's good!! 👍🏻😊