Search Discussions

Main Content

  • writemyline
    Hi all,
    I'm three weeks off Betaserson after 12 years and tapering off Zoloft. My neuro is swithching me over to Gilenya because I started having horrific reactions to Betaseron and a major depression episode that lasted a year. I honestly feel like a new person now that I am off those meds. I had no idea that my depression was as bad as it was and that the Beta was the root of the problem.
    My question is: Has anyone made the switch from Betaseron to Gilenya under the same circumstances and what is their experience (both good and bad)?
    I am so tempted to just bide my time without a therapy because it has been so long since I've felt this good. The possibility of another major depression episode sparked by a new med frightens me. Honestly, I'd rather live with the increased threat of more exacerbations if it meant I'd be free from depression and anxiety.
  • seenjo11
    Hello writemyline:

    I can't speak for the Gilenya part of your equation but I know that there are people here who have gone through what you are now or have gone through with regards to the switch. Personally, after being diagnosed 4.4.12 I went directly onto Avonex at the urging of my then neuro. After my 2nd MRI in early Dec. and follow-up with current neuro in Jan. we decided that the Avonex just wasn't doing anything...which came as no surprise (it seems as though I am PPMS) Anyway, nuero wanted me to go directly onto Rituxamab. I've decided to take a break from the meds. I think adding a little perspective (given the time line explained above) through a clean and clear lens can't be a bad thing. I am enjoying this 'sobriety' for the time being. Though, like almost everything else in MS land, I'm sure it's just transitory. Cheers. sjm
  • writemyline
    Thanks for your reply. I'm sorry the Avonex didn't work for you. I really don't know anything about Rituxamab; but I do understand the seriousness of your having PPMS. I think you are wise in thinking through the possibilities of treatment with 'sobriety'. I, too, am looking at Gilenya and the possibile side effects more closely than I did with Betaseron. When I was dx'd 12 years ago and started Beta, I honestly did not look at the possible side effects. When I started having problems, I didn't attribute them to the long-term side effects of Beta because I hadn't really had any problems beforehand (other than the 8+ hours of flu-like symptoms following my shots).
    This whole experience has caused me to look at drug therapy differently. Especially in light of my feeling so much better now that I'm off Betaseron. I trust my neurologist completely. He's my rock and he promises me that he's going to keep me feeling better. I believe him, too; but, I also believe that I've work to do on my own - such as extensively researching Gilenya and weighing the pros and cons. Gilenya treatment is new, compared to Betaseron. I have concerns about the long-term side effects...
  • seenjo11
    Seek out hlessley. She has been on the Gilenya (after having been on Avonex) and loves it. She would know more about potential side effects.
  • writemyline
    Thanks, seenjo. I did contact her and we are communicating. I appreciate your suggestion...
    Be well, friend.