We are a charity and rely on donations

Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

©2024 Shift.ms

@Farah94 

Last reply

Farah94

Anxiety around immunosuppression

Hi everyone, I'm looking for advice about Ocrevus and immunosuppression, and would love to hear people's honest experiences. I’m newly diagnosed with RRMS and have agreed on Ocrevus with my neuro team. This is what I wanted and I feel confident in my choice; my doctors feel the same as my lumbar puncture showed my MS is quite ‘active’ and in June I had a relapse which wasn’t nice. However: I’ve got a lot of anxiety about the immunosuppression. I feel pretty relaxed about the infusions themselves, but I’m quite scared about the risk of infections when on Ocrevus. I’ve got this image in my head of me walking around, constantly snotty and phleghmy, plagued with coughs/colds/flu/chest infections and worse. I often work in schools which I’m now concerned about, as children are of course the germiest little creatures who spread illnesses like wildfire. I also keep wondering if I’m going to have to make huge lifestyle changes – for example, never putting myself in crowds like at the theatre or in bars. Both things I love to do. So I suppose my questions are… - Is it really as bad as I’m thinking? Will I be 'sick' all the time? - What can I do to reduce the risk of infections? - Can diet and vitamin intake really help, or is it just a placebo? - How do you navigate being immunosuppressed in your day-to-day life? Thanks everyone! Looking forward to hearing your thoughts. Farah x
13
@Vixen
@Vixen
 

Hi @Farah94. Firstly, Ocrevus is a great option for you as it's currently the best there is. Some DMDs are immuno-suppressing and some merely modulate (not sure of the difference!). I would probably be more concerned with the nature of your job. I work in a school too (now remotely) and one thing I've noticed since WFH is that I haven't had one cough/cold which has been lovely! Masks can go some way to alleviate this, although that's not the coolest look for the clubscene! With a DMT you will be monitored regularly. Could you have a chat about your anxieties with an MS nurse? You could think of a different DMD based on your worries.....I hope you get some reassurance! :-)

1
@Clary
@Clary
 

Hi @Farah , really good news that you can start on Ocrevus. Your MS team obviously feel this is the right treatment. They should be able to advise. Ocrevus only kills B cells not T cells. So as time goes by some of your B cells will come back before the next infusion. I guess people on Ocrevus are most vulnerable after infusion for a few months. A healthy lifestyle is always helpful, but may not be enough. I guess precaution around the kids and lots of hand washing. I guess it is a risk management exercise. This can be tricky when thinking about the future. Kids tend to pass about the usual coughs, colds, flu etc. Children rarely have serious disease. This may mean you needing some sick leave. Definitely recommend you being off when you need and taking care of no. 1. Definitely recommend a chat with your team, who should be helpful 👌.

1