Optic neuritis

Hi, I'm new to this site and looking for information. My daughter was diagnosed in 2011 and was on an injection medicine that stopped working for her two years later. Then she was on tecfidera which stopped working and she development new leasing rather quickly and continued to develop more. We are about to take on Gilenya but have a fear of her optic neuritis getting worse because she was one of the unlucky people who did not get her vision back in one eye with her first episode. We cannot afford to take on a medicine that could virtually take away what is left of her vision. Can anyone tell me if they had any complications with optic neuritis and this med?

Thank u for any replies.

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14 Replies

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  • Jmarie1 so sorry I can't Halpin u with info about Gilenya

    I wish the best for your daughter and glad you are here as her advocate

  • I am so sorry to hear about your daughters symptoms. Her doctor should be able to advise her of possible side effect with the new medicine.

    Welcome to our site anyway.

  • Hi Jmarie1 and daughter ☺ Welcome to our forum. So sorry that it's for this reason though. I hope you find us friendly and informative bunch on here. But most of all Supportive! ☺

    I'm very sorry to here about your daughter's optic neuritis. Not to mention losing her sight in 1 eye. I don't blame you for being worried. I don't know anything about gilenya though, as l take Copaxon. But. If you type gilenya in the search box, you will see past discussions we have had about it☺ Maybe that can help you some.

    Most importantly though, if your having concern's talk to your Neuro about it! Tell him your concerns. And make sure he understands you. You are your own best advocate.

    Jes🌠

    ps. ~Helpful Hint~ If put an @ in front of the person who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • I'm sorry you've had so much to deal with. We are all hoping and praying you find clear answers.

  • Maybe she should try tysabria I was on tecfeda too and developed more lesions since I had been on 3 other injections before I was placed on Tysabria it really increased my energy level balance is good check it out

  • Hi Jude12347 Welcome to Our Community, that l hope you will feel like home soon! OK that sounds creepy.😕😅😅 Sorry. Anyway welcome, we have all have become like family. We talk about pretty much anything and everything here but most of all Support each other!

    You should tell us a bit about you? Where are you from? How long have you had this monster? What's your favorite color? You know things like that.☺

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

    Jes 🌠

  • if you're daughter is failing multiple dmds hsct might be an option. while some might think it is extreme i had hit a glass ceiling and hsct was terrific for me and i only wish i could have had it 10 years ago!

  • @nes78, Are you referring to a stem cell transplant (hsct)? If so I would be very interested in learning more about your experience with this treatment. There may be others in this forum who might also be interested in learning more. Thanks

  • @BillD999, i had hsct at northwestern in chicago almost 4 years ago! at the time i was 35, in and out of nursing homes, had home health care and i went to see dr. burt to see if i could be in his study. i could barely walk with a walker so i could not be in the study but was having a ton of new activity, have a history of chemo working for me and he talked to dr. calabresi at johns hopkins on the phone and we went for it. my edss at the time was 6.5. now it's 3.5 and i have no more shower seat, wheelchair, quad cane, single point, bed rails - NOTHING!

    i was dg. at 23 and from the beginning i've had significant cognitive problems and that did not improve but everyone experiences different things. dr. burt said i think you can walk again. and he was right. i had nothing to lose. i'm still on ssdi but the physical benefits for me were tremendous.

    right after hsct i went to inpatient rehab w. a single room because of the chem for over a month to learn to walk again and that was very important for my recovery and cost as much as the hsct!. but still, considering what dmd cost it's a bargain!

    haven't taken an ms drug in over 4 years. what dr. burt does is amazing and he treats other ai disorders too - ra, scleroderma, etc.

    medicare and my secondary covered everything minus all the flights back and forth and accommodations. if i would have had this done 10 years ago maybe i would still be working instead of not even being able to survive on ssdi. (as i write from the third floor of a friends house who is letting me crash here)

    it's such a shame people are being taken advantage of my "stem cell" procedures - we hsct'ers say no chemo, no cure - though i don't like using the word cure. some people are leaving the county to get this done. again, no promises but most people wish they had it sooner.

    dr. burt askes his patients how they find out about him. through other patients!

  • @nes78, Thank you for your reply. Very good information. I'm not sure everyone is aware that this treatment is available in this country.

  • nes78 thank you for the reply. I have been considering this option but didn't know anyone who has had it. I would be very interested in talking to you in depth about it if your available as we have an appointment with my daughter''s doctor to figure out if this option of Gilenya would be ok for her to take.

  • @jmarie1 first there are a few things i've done that if you haven't seen might help. my short story - vimeo.com/130065935 the information posted below about the trial - the hsct fb group which has grown SO much, etc is all useful.

    also i was asked to do this interview a while back and while i find it a little long someone from nmss is acknowledging hsct is for real. blog.mycounterpane.com/empo...

    i have always needed aggressive neuros but i'm hoping your daughter won't need that. i was on betaseron for years but in combination with huge doses of cellcept. i don't like to talk to people who are newly diagnosed because my ms has been like an alien version! but even in the knowing about hsct you're head of the game. :)

  • nes78 Thank you for the information. It was very helpful. We see my daughters doctor on Wednesday to discuss her options.

  • Hi jmarie1, I hope you are asking your neurologist all of these questions and more. Make sure that your neurologist is trained and experienced in MS; don't assume that this is so just because he or she is a neurologist. There are many places to obtain information nowadays and learning as much as you can about these matters on your own will make you a better advocate on your daughter's behalf. Good luck!

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