My Treatment Experience

Am new here but thought I’d share a few things about me and my MS. Diagnosed about 12 years ago. Started on Copaxone, then on to Betaseron and went on to Tysabri.

Rituximab seemed to help

Nothing worked. Positive for JC virus after about a year and a half on Tysabri. They pulled me off. Sent to doctors at UT Southwest for a second opinion. Went on to Rituximab and it seemed to help with my loss of vision and no new lesions on MRI.

I tried Ocrevus…

When insurance didn’t want to pay for Rituximab but would pay for Ocrevus… I tried it. I had horrible problems with Ocrevus. Doctor wanted me to try it one more time, with doubling up on pre-meds. Again, slowing rate which took all day and knocking me out… still was bad. Insurance agreed to do Rituximab again and quickly had it. Haven’t been the same since the Ocrevus. It works for some… I’m just not one of them. Being positive for JC virus still concerns me with PML.

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Comments

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  • Lilmsunderstood
    3 weeks ago

    Lodaox,
    Glad to see your post. I too have had vision loss, permanent in my left eye after ocular migraine around 2009, then spent over 4 months in total darkness in 2015. Was told UTSW was the place to go but never recieved the papers from them. I was diagnosed in 2004, am now on my 7th DMD which is Ocrevus. I took my first dose 3 days ago. I had reactions, they stopped the infusion filled me full of saline and benadryl before slowly restarting. I would certainly love for this medication to work as all the others either did nothing or I had severe reactions. I’m interested to hear how you do, especially your vision. I was told there’s a handful of us they haven’t had enough history on to know what to expect as far as vision loss. I wish you the very best and hope you find relief and success with your new treatment.

    Jenifer

  • ShelbyComito moderator
    4 weeks ago

    Hi @lodaox, thanks so much for sharing a bit of your experience. Treatments can work so differently for different people, and I’m so sorry to hear that you experienced such negative side effects on Ocrevus. I’m glad that your insurance company agreed to cover Rituximab and that that is working so much better for you. Advocating for yourself is so important!

    I also thought I’d share this article with some helpful information on PML and the JC Virus: https://multiplesclerosis.net/living-with-ms/101-understanding-pml-jc-virus/ I hope it’s helpful. Thank you again for taking the time to share your story!

    Best, Shelby, MultipleSclerosis.net Team Member

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