I haven’t posted for a very long time. Last week I started Ocrevus infusion and am due for the 2nd half in a weeks time. I just wondered if anyone is having this treatment and if so how are you going about your day to day life? I am a trying to get used to having to take medication and the future.
Have you had to make changes eg wear a mask when on public transport, reduce social activities? Have you been well? If not do you recover quickly?
Another question I have is I have had this before, the next day I was just bending to wash my face when I felt a sharp pain in my side (just above my waist) and a tight twisting feeling. This is still with me 2 days later. I have had this feeling before when making movements where I bend forward. I will be phoning my GP tomorrow as it is not improving. Has anyone had anything like this? I am scared to make certain movements as it feels so tight as if my side is going to spasm.
I appreciate your replies, sorry for long message, just a bit concerned. Thank you.
Hiya… yes, I’m having Ocrevus infusions - and have been perfectly OK with it. The infusion itself is just a long day in the hospital, attached to a drip, but you recover in a day or so - and it seems to be doing the job. Best to be careful for a week or so after the infusion, while the immune system rebuilds itself, but after that you can just forget about it and get on with your life for another 6 months. Price worth paying, I’d say. Can’t speak with any authority on the other things (I’m not medically trained)… probably best to check with your care team about that.
Hi! I also started Ocrevus in February this year and have recently had my first full dose. I hope your next infusion goes well
For me, the shock of going into hospital and being hooked up with a cannula felt less this time and because I knew what to expect, it didn’t feel so bad. I get wiped out for the days that follow an infusion but then feel more myself again.
I have tended to avoid people with colds and when my kids had a nasty flu-like virus I did mask up on occasion, but they are a bit older so could understand why, a bit better. I work from home so not exposed as much day-to-day but have been to gigs etc without a mask and have been fine.
Thank you so much for your reply, it really helps to hear how others are getting on. I am back on Wednesday for part 2 and I am feeling less anxious reading comments like yours. I just need to think how to pass the time now I realise my arm is stretched out (was the right arm last time and I’m right handed so limited). Maybe I’ll listen to some podcasts.
I might double check regarding being vulnerable but what you said was useful.
