Hi everyone, I had my first half dose of Ocrevus on 17th January and due my next dose this week. I’ve had a mini meltdown today doubts over whether I am doing the right thing? will it be worth it as in, will I feel any better, soon? I was off work for nearly a week first time as was wiped out and it felt like a month. I like to be busy and in my routine and I’m not good mentally when I’m not keeping myself busy. Just looking to speak to people who have experienced some of this stuff and can help me out of a bit of a rut. Had a sore head almost constantly since the treatment and just feeling a little worn down. Any words of wisdom would be really appreciated.
Know how you feel started Ocrevus myself in December. Sadly the treatment wont help you reverse any of the symptoms but will help slow down the relapsing/slow down you getting worse. If you feel you are having a bad effect of the treatment talk to your neurologist or ms nurse. They may suggest a different treatment if you aren’t too sure on this one. Sends all the hugs it can be a lot to take in if you need someone to talk to or just need someone to listen drop me a message anytime.
The highly-effective DMDs (Tysabri in my case) really can transform things. 10+ years ago I was relapsing badly and repeatedly and getting more disabled every time. If you had told me then that this drug would give me a relapse-free decade and bring me enough health to make the best of the mobility I do still have, I would have struggled to believe it. And it might all go to hell tomorrow of course - that’s MS for you - but it hasn’t yet, bless it. I hope that you find something similar. In any case, you’re giving yourself the best chance.
Thank you for replying! I’ve just felt pretty rubbish since the infusion to be honest. I wasn’t feeling that poorly before hand and had high hopes that it would at least help with headaches after speaking with someone at the infusion who says the treatment transformed their life. Does anyone just get frustrated and being fatigued after treatment due my next one tomoro and not sure I’m up to the challenge of feeling rotten afterwards for another few weeks.
I did feel a little run down for the first couple of weeks but that did slowly go away after a while. For me I’m hoping it will keep me as mobile as possible that the long term gains will offset the short term poopy feeling.
Totally, I’m hoping the long term gains will pay off too I’m just feeling a little negative at the moment because I’m finding it hard to have those hopes when I’m feeling rubbish. It will pass it’s just hard when you are in the eye of the storm I suppose.
Do you know which type of MS you have been diagnosed with if you don’t mind me asking?
It’s relapsing and remitting
Ah sending all the luck it will help cut down any relapses for you.