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First Ocrevus Infusion - side effects

Having gone from 'benign'to 'active' to 'PPMS re classified as 'active progressive' MS in the last 6 months following a spring and summer of poorer balance, stumbles and ever increasing fatigue, i was deemed eligible to receive Ocrevus. Once in motion the NHS can move incredibly quickly, and, after a few hiccups I have found myself well and truly in the system. I signed my consent form on the Tuesday and 9 days later(yesterday) was hooked up to the drip receiving my first dose of Ocrevus. Apart from a nasty metallic taste in my mouth and feeling incredibly tired - a combination of an early start to get to the hospital, a 2 hour delay because admin hadn't put my records on the system, the Piriton they give you to manage any reactions and a poor night's sleep - i seem to be ok. Hopefully it will stay this way. Looking forward to a large G & T.

Good for you! If you click on the Ocrevus tag below your post or put Ocrevus in the little magnifying glass in the upper left you will see a lot of posts from people either on or considering it. I had my first couple of half doses last fall and have my first full dose in early April. I don't notice any huge gains as some report but I have had modest improvements that I am happy for. The main role of a DMT is to prevent further progression so I definitely feel that isn't happening ;-) I was diagnosed with RRMS in 2005 which moved into SPMS last summer or possibly before. I haven't had a noticeable relapse in about 5 years but have had disability progression especially involving my right leg with more foot drop which likely contributed to needing a hip replacement 2 1/2 years ago for which recovery has been difficult. I think there are issues with nerve repair from a major surgery like this when you have MS but getting the papers and research is difficult and my Neuro and the Ortho Drs aren't very forth coming...they just advise to keep doing PT and take more MRIs and do more tests and shake their heads...ughhh So I keep doing more PT, getting my sleep, eating right, etc and it is going well ;-) Some of us reporting kind of feeling "bouncy" after Ocrevus...kind of more springy in a good way but it can also cause a bit of an unbalanced feeling as well. I've found that I leave my walking stick behind when I am certain of the flat smoothness of the walking surface (like a across a room or down a hallway) or when it is a short distance to do something like grab a shopping cart at a store. So that is all and good ;-) before the infusions I never left the stick behind.


The metallic taste in your mouth was likely due to either the saline they use to flush the lines and/or the benedryl type stuff they put in to manage any reactions. I noticed it more on the front end of the infusions and I remember always getting it as well when I would have to have the steroid infusions during a flare. Apparently it is common but not everyone notices or has it. They had offered water and juice for my bedside and I requested both as I find that I tolerate apple juice well during these times and found that helped mask the taste pretty well. ;-)