Ocrevus for PPMS

Diagnosed with PPMS 14 years ago. I was informed by neurologist in 2019 that was was eligible for Ocrevus and was just waiting on a date to get started. Covid hit and then I was informed by neurologist that I wasn’t to get Ocrevus. To say I was upset was an understatement. I have emailed my ms nurses this week to ask them if the neurologist would reconsider his decision for me to get Ocrevus. Has anyone else experienced this? I just feel it’s a constant battle and it’s not fair x

Hi Kjack
I can’t even get ocrevus as i can’t walk. It’s a constant battle with anything medical. PPMS is the ugliest of the ugly sisters and no one seems to look at it. Probably not true but definitely how it feels.

Thank you for your response. It feels so unfair when it is the only DMT we can get xx

I have PPMS and following an MRI in 2019 my consultant told me I wasn’t eligible for Ocrevus because my MS wasn’t active! I can walk but am really better with sticks. My mobility has definitely deteriorated since I was diagnosed in 2017, despite my best efforts!

It’s so annoying eh. I really hope neurologist re considers his decision about not holding out much hope xx

It’s VERY unfair.

Be under no illusion that the decision to offer Ocrelizumab is largely financial: It costs the NHS over £20,000 per year for each patient.

I’m currently fighting being turned down for Ocrelizumab. One of the criteria was if diagnosed over 15 years ago. I was diagnosed 1 year ago but had mentioned to my consultant in our first meeting, a couple of unexplained episodes in 2003 & 2008. They are now using those against me. It’s pretty dirty.

In your case, they could be running down the clock against you too.

Keep fighting!

Yeah I think that is definitely what is happening with me. They are counting down the time until my 15yrs is marked and then they have have no more excuses not to give me it.