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@sofyg 

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sofyg

Ocrevus running out

Hey guys, I’m due to have my second infusion of ocrevus next month (so my first one was 6 months ago) and I’m feeling increasingly rubbish! Was on tecfidera previously and felt my usual healthy self but my MRIs showed progression so I was switched to ocrevus. I continued to feel healthy until the last 3 weeks when I’ve started having symptoms I haven’t felt since my initial relapse. For example crazy buzzing in my legs after walking at a brisk pace even for a short distance. Or today after walking home (2 miles and fast) I got in the door only to realise I was experiencing Lhermitte’s sign again! Haven’t felt this since my first and only relapse. Im wondering if this is because the ocrevus is running low in my system? Or because I’m on the edge of a relapse. Has anyone else experienced this before? I’ve emailed my MS nurse all of this and have bloods scheduled for tomorrow in preparation for my next infusion so will talk to them about it then. Thanks!! Sophie
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@Air_Nuic_1
@Air_Nuic_1
 

Are you on any diet that may contribute? If you are not you should.

@Mlgilber1
@Mlgilber1
 

About two months prior to my next infusion I always feel bad and get really bad fatigue. My nurse’s assistant told me it’s probably because my next one is coming up. I’m part of a Ocrevus FB page and a lot of the members experience this as well and we call it the “crap gap.” I’ve heard it usually gets better/shorter with each infusion. Some of the other people in the group have gotten their doctors to give the infusion every 5 months so there isn’t a gap or their doctor will give one steroid infusion a month prior to their next O infusion to hold them over. I get my infusion on Thursday and it’ll be my second full dose. Thankfully, my symptoms haven’t been as bad this time around going into my infusion, but I have had some bad fatigue this past month which comes and goes. I hope you feel better soon.