Is Gilenya working?

[nkh18]

How do you know it's helping you? I'm SPMS and have been on G for 18 months. I haven't had any problems with it but am still slowly getting weaker. My MRI hadn't changed much in 2 years and showed no active MS. So how do I tell if it's working. I meet with a new neurologist next week and will ask if I'm on the medicine best for me.

[finee9]

Is it working? That seems to be the question most are asking. I was doing alright on Tysabri, I've been on it for 5 years and I'm way to JC+ so my Doc switched me to Tecfedera. The problem is, the side effects from Tec are worse than the disease so I stopped taking the drug. I'm feeling pretty normal again, now what? I'm like you I don't what to do...I feel your pain!

[slimstacy]

Is it working? That seems to be the question most are asking. I was doing alright on Tysabri, I've been on it for 5 years and I'm way to JC+ so my Doc switched me to Tecfedera. The problem is, the side effects from Tec are worse than the disease so I stopped taking the drug. I'm feeling pretty normal again, now what? I'm like you I don't what to do...I feel your pain!

I feel the same tec was not for me I was so sick on that it was disgusting I was on solumedrol and cellcept for a while might go back cause I don't know where to go from here tysabri I am positive so that's a no go gilenia is next option but tec stunk you can't work you can't move

[Goldfinch]

Two people reporting thumbs down for Tec- that's discouraging. I am scheduled to start Gilenya in january and if it doesn't work, Tec was the other suggestion from my neuro. I used ot be on Ty also but 72 infusions + JC positive made it contraindicated for me at this time. Dang it. really loved Ty, had NO side effects whatsoever form it and was relapse free while on it. Neuro did say Ty was an option if I fail the other therapies though, so I guess he believes in informed patient choice. He might just say that so he's not the bad guy when insurance denies it later, lol. Either way, I feel like my neuro is in my coroner so there's that.

OP, given that your sp, it might be harder to tell if it's working. Do you get periodic MRIs to compare to a baseline, like they did with me when I was on Ty?

[Goldfinch]

Danged typos

Just reread my post and realized all the typos made me sound like a tard. You used to be able to edit your posts and I don't think you can now. Oh well. So my neuro is in my coroner, huh? Sounds like SOMEBODY'S a little frisky for their own good, lol. Forgive my typos please. I really can type better; I'll just need to take the time to proofread posts from now on.

[Brass]

Been on Gilenya for nearly 12 months after Copaxone failed to work, my first MRI in June since i started Gilenya was all good with no new lesions however just had another MRI and there are 2 new small lesions on the back of my brain although i've been feeling great since i've been on Gilenya!. My neuro wants to put me on Tysabri despite me being JC+, i've told him no and we have agreed i will stay on Gilenya for another 6 months and review it again after another MRI.

[tspaulding]

How do you know it's helping you? I'm SPMS and have been on G for 18 months. I haven't had any problems with it but am still slowly getting weaker. My MRI hadn't changed much in 2 years and showed no active MS. So how do I tell if it's working. I meet with a new neurologist next week and will ask if I'm on the medicine best for me.

I was dx w/ RRMS in 95 at age 21, I have had the same sxs for 7 yrs daily. I have been on gilenya for 2 yrs, im the same, but that is better than worse.