Hi. Im hayley and I’m 40 years old (think thats the first time I’ve typed that, it was only my birthday in December lol). I was diagnosed with RRMS in 2014. I have been on Tysabri since 2016 but they are in questions now if to put me on Ocrevus as they are saying i have secondary progressive MS. I dont work, my mobility isnt great, so i just thought it might be nice to talk to people in a similar position
Hey Hayley,
Am PPMS and started Ocrevus in december. Main thing I can suggest is just to make sure you bring plenty to keep you from getting bored, snacks and drink. Also make sure you have plenty of time to rest up after as it does take it out of you for a few days.
Hi @Hayley1983
I’m 43 and initially dx RRMS in April 2001. Not working since January, of last year. My mobility and general health hasn’t been the best, the past few years now.
Nice to meet you.
JP
Well, that progressive word is never going to be a nice thing to hear. I am sorry that Tysabri has maybe not done all for you that you hoped.
Hi alison. No the progressive word is pretty scary. The doctors have called today and confirmed im swapping to ocervus xx
Aww hi pete. Thank you for tgat advive. I do see the people in the same treatment suite as me on Ocrevus with their books/laptops etc. So i best get prepared haha. Xx
Aww hi. Sorry to hear that. It can be a lonely world when we stop working
Hi @Hayley1983
How’s it going? I signed
-on today @ local JobCentre+, the last time was not long after leaving full-time education and this time it was ‘under the auspices of disabled and not fit for work until further notice’ ESA, not standard JSA like last time.
I do miss work but, hey-ho life goes on.
Do you know when you’re starting Ocrevus? I’m on Kesimpta, which is a monthly much the same muchness CD20 treatment for MS and though it’s still early doors, I think it’s lessened the severity of relapses since I started on it last year.
Best wishes,
JP