@A MyMSTeam Member If it’s Ocrevus you’re talking about, it’s FDA approved in US for RRMS and also PPMS. So, if you’re in the US and still have a diagnosis of RRMS your insurance should cover it, same goes for PPMS. As a matter of fact, my neurologist was one of the researchers who worked on getting Ocrevus FDA approved. If your neurologist were to change your diagnosis so insurance would cover the MS treatment then you would no longer have a problem. What are you talking about that’s off label?

@A MyMSTeam Member Thank you for clarifying what medication you were talking about. I think it’s great you have a neurologist you highly regard and trust. When I replied to someone else previously I’m not quite sure why I put Rituximab for the medication name, I must have meant to put Ocrevus or something else and auto fill somehow changed the medication name on me and I didn’t catch it. I’m sorry if what I wrote was confusing, it wasn’t my intent.

The reason to have your neurologist change your diagnosis was only for insurance purposes, not for what a patient’s real type of MS is. What I went through as far as physical disability goes could have easily classified me as something other than RRMS, which would have given me limited access to which MS treatments insurance would cover, and Aubagio wouldn’t be covered and it’s scary to think about what shape I might be in right now as a result.

Instead, because she kept me RRMS we tried Copaxone, Tysabri and Gilenya first and when those didn’t work, Aubagio and now I’m over four years relapse-free and doing things I haven’t been able to since before my MS journey started. I went from two feet to using a cane, then a walker with portable c-pap machine (just needed air no oxygen) then back to cane and finally two feet. Right now I use a cane because my feet don’t know where they are (proprioception) and I need something to connect me to the ground.

@A MyMSTeam Member Someone needs to update your insurance company that MS is one of the conditions Rituximab is used to treat. Maybe that's you. In your paperwork that comes with your medication each time, there should a information sheet that explains everything about it including what conditions use it for treatment. Find the sheet, call your insurance company and ask them how to get their database updated to show that Multiple Sclerosis (MS) should also be on the list of conditions that are treated with Rituximab. Then follow through with getting it done; it might be as easy as them reading the medication information sheet, one can hope.

My fingers are crossed for you.

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A MyMSTea...

The rituximab had to stop because my insurance said it is for Leukemia as opposed to MS and so it was all out of pocket. I had a progression two days ago when I caught a fever and my body locked up causing me to fall. Since I am primary progressive, the Ocrevus is a cousin of rituximab and designed for PPMS as a way to stop the attacks so my body can heal.

I'll update my status once I see some results. Cautiously optimistic.

My doctor just changed my to Ocrevus too because my insurance won't pay for Rituxan anymore because they say it doesn't work