I was told I had PPM and had first infusion last June. Following infusion felt like fell off cliff symptoms worsened particularly balance and walking. Nothing levelled off. Had second infusion and third infusion of Ocrevus each time symptoms of balance and walking have got worse. Has anyone else found that? Now scared to have another infusion
Best to discuss this with your MS Consultant or to him/her via your MS Team.
I had 3 rounds of Ocrelizumab, like you, and then paused it. In my case, had become immunosuppressed (UTI’s cellulitis, lymphoedema & veinous ulceration of lower leg). Pausing was by agreement as there is no point being on a DMT if its side effects are undermining your whole body.
Having stabilised again (a year later), I would say my underlying rate of MS symptoms progression has been worsening again so in my Consultant appointment next week, I will be asking to go back on it again. Trouble with PPMS is there is only one approved DMT choice, though you might want to look at some of the clinical trials for BTK inhibitors (???-brutinib - there are several) if you fit the criteria.
Graeme
Thank you for sharing that, most helpful.