Ocrevus as a First Line Treatment on the NHS
Hey there, I was wondering if anyone has received Ocrevus as a first line treatment on NHS England? I'm really keen to fight for a high efficacy treatment for myself after doing some reading, so any sources anyone can throw my way would be immensely helpful. I am meeting my neurologist and discussing treatment in just over a week. What can I do to convince them that I know what I'm talking about? I feel very strongly that it's my body and my choice and I really just want to be able to get on a high efficacy treatment that will set my mind at ease as much as possible. I hope they're really nice and will listen to me, but in the event they don't I'm half tempted to say that either I get to make the decision or I won't go on any treatment at all (which would probably be a really bad idea!) On every level an infusion therapy makes the most sense to me, from the research to just on a personal level I don't want a treatment that I'm in charge of administering adding another aspect of self care into my day. I just know that all it will take is one slip in my mental health and I will completely lapse treatment, I've done it before with my asthma medication and that actually has a day to day effect on my life. So anything anyone can offer me that will help me make my case would be really appreciated! (Also, anyone that wants to talk my out of my decision, feel free to add your two cents!) Very nervous about this and just really want to get this as right as possible!
Hi! Ocrevus was offered to me after an unsuccessful 4 months of Tecfedira (couldn't tolerate GI side effects) and my refusal to self inject at home with an alternative. It's important to be as honest with your MS consultant /nurse as you've been here about your mental health concerns. My own experience with Ocrevus hasn't been positive and I'm disappointed that due to starting October 2020 the Covid vaccine has been ineffective in giving me any protection due to the ongoing Ocrevus effects. I'd never have started Ocrevus if I'd known this was a risk and now feel trapped at home trying to avoid catching the delta variant in a high risk area. But I understand I'm a rarity and it's generally very well tolerated and positive for the majority. It's also one of the most effective DMTs based on clinical trials. Wishing you all the best with your appointment and treatment.
I think it is super important for you to lay it on the line in a calm and precise way. I would recommend that you prepare and practice, or write some notes. Being clear and concise will help them understand what you want. With regards to medication it totally depends on your neurologist. I think the neurologist will offer medication depending upon how active your MS is. I have found charities give great information online with regards to NHS treatment. If I could have total control over my treatment I would choose Ocrevus. I hope you can get the treatment. Good luck 🤞.