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Autoimmune disease
Ms - starting ocrevus
superstar84 · 28/12/2021 21:33
Just wondered if anyones on the ocrevus infusions for ms and how you found your first one?
I've been switched from tysabri and starting ocrevus in feb
Feeling nervous as I've done well on tysabri and know all the ward staff really well so always feel quite relaxed
The consult said I'll be in a different part of the hospital and will feel rubbish for a few weeks afterwards
Heyduggeeeee · 01/01/2022 20:54
My DH is on ocrevus. He has had 2 so far. His first one took a long time as they had to keep stopping to give other meds. His advice is whatever feeling you have, no matter how silly you think it is, tell them. They asked him if he had a scratchy throat and he did but hadn't mentioned it. Ten mins later his throat was swollen. He felt a little rough for a day or so but that could be down to the anti histamines and other things they give to counteract the effects of the ocrevus.
superstar84 · 01/01/2022 21:20
Thanks for answering
How was he in the days after his first infusion? I'm not sure if I should be arranging childcare etc or if I'll be ok?
They said I can't drive afterwards but I was hoping I might be ok the next day
Heyduggeeeee · 01/01/2022 22:34
He was able to function the next day but he was a bit wiped out. Depends how old the kids are though. He found it was a long day so he was tired. We only have one 7yo dd so we wouldn't have needed childcare as she's at the age where she can manage with minimal input.
He just felt tired and wiped out rather than ill and was fine after a day or so. He does tolerate meds quite well though so you may feel different. He did get quite a few side affects on the day though. Swollen throat and sickness etc so be prepared to tell them anything you are feeling as they stop the infusion and give you meds to counter them. By his second one the staff knew what might happen to him so we're able to get the meds he needed ready which speeded it up. I drove and collected him the first time and took him the second but after his second infusion he was well enough to get the train home (the hospital has a train station on site and I picked him up from our local one).
superstar84 · 02/01/2022 15:21
Thanks that doesn't sound as bad as I was expecting
I'm having the 2nd part of my first dose 2 days before dc birthday so I was quite worried I wouldn't be able to do a lot with them or sort out a little family party at our house
Heyduggeeeee · 02/01/2022 22:16
In his experience it wasn't too bad and a birthday 2 days after would have definitely been doable. I hope it doesn't t affect you too badly
kagerou · 30/01/2022 13:51
My drs want to start me on Ocrevus soon but I'm a bit nervous! Please could you update once you've started @superstar84 ? x
superstar84 · 31/01/2022 06:44
I had my 1st dose 2 weeks ago
On the day I was really anxious but I got up early and had a hot drinks & sausage sandwich as the nurse said those who have breakfast seem to do better
At the hospital they explained d everything and started the anti histamines and steroids
After about an hour they then started the ocrevus
I did have a little bit of a reaction - sore throat, tingling all over my head so had extra 2 doses of the anti histamines
It took about 5.5 hours all together then I was allowed home
I came out feeling dizzy, light headed and almost really hungover! That lasted for 2 days after the infusion so personally I wouldn't have wanted to drive or really leave the house until 3 days after
It wasn't as bad as I expected but I was grateful that I'd planned a quiet weekend with some help for things like cooking, intoning and every time I stood up I felt a bit off. It was really just like the worse hangover ever where a Big Mac and coke just wouldn't help!
Feel free to ask any questions or pm, in due my 2nd dose at the end of the week
PastMyBestBeforeDate · 12/02/2022 23:01
Hope your second dose went well. I'm a bit further along and it's going well. Apart from the immunosuppressant issue with Covid. I have a steroid bounce after mine which is lovely.
Happytodayhappytomorrow · 17/02/2022 06:42
please may I join this thread? I'm looking at options given by the consultant and one of them is Ocrevus.
How are you doing Superstar84?
Kagerou, have you started now?
superstar84 · 17/02/2022 15:06
My 2nd dose got delayed as someone in our family had covid so they put it off
I'm back next week for it
I did feel worse afterwards than I did with Tysabri but for me the benefit of going to every 6 months is definitely worth it as before it was every 4 weeks
This time I know a bit more what to expect so I won't plan anything at all after for 3 days
Happytodayhappytomorrow · 18/02/2022 12:12
sorry to hear that.
Do you only feel rough for a few days though? Have you been getting any other side effects?
superstar84 · 19/02/2022 08:03
This time I feel fine the day after
Yesterday during my treatment I did feel dizzy but no problems this morning
I def wouldn't drive on the day though
It took 4 hours yesterday which isn't bad at all
I think last time I felt rubbish for a bit longer as it was the first time I'd had it and I'd also had extra anti histamines but yesterday only needed one dose
Tara336 · 20/02/2022 17:54
I’m on Gilenya but have been offered Ocrevus. I’ve carried. On with Gilenya so far as the timing of starting Ocrevus was too close to my wedding and I didn’t want to risk not being well enough. One of my friends is a year in and doing well but says she notices a dip when she’s due the next infusion
kagerou · 27/03/2022 23:33
I still haven't started yet as they've been delaying due to covid.
I'm still breastfeeding but will have to stop on ocrevus which is a shame but I keep being told its much more effective than copaxone.
How have people who are on it finding the immune system affects? Do you notice getting colds etc. more easily?
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