Last reply 1 month ago
Ocrevus

Hey guys. Havnt posted for acouple of months. I have finally had my first half dose of ocrevus and feel amazing!!! Been postponed since march because of covid. Also I was apparently the first patient to receive it at my hospital, which got the green light in January that they can start doing it!!!
Coral x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
2 months ago

Nice one @coralellis. Stay fit and well; do you have to shield now Look after yourself, lots of treats 🙂


coralellis
2 months ago

Thank you @vixen. Yes I have to shield for 6 weeks now and I have lots of treats to keep me company Haha. X


itsmewithms
2 months ago

I just found out about an Ocrevus FB group and joined. Good O specific discussion there. Glad all is going well for you 😉


coralellis
2 months ago

Hey @itsmewithms I think there are acouple of ocrevus groups on fb. I joined one just before having my infusion and I found it very helpful. Especially seen as everyone has been in the same boat waiting for it to start back up again. X


dvtrv
2 months ago

@coralellis

Nice one hope it works for you.

A very, very important question which I just have to ask;

What treats have you this next 6 weeks?


jojok
2 months ago

@coralellis

Congratulations! Glad to hear it went well. I’ve been told this week that I can have my first half dose in the next 2-4 weeks but interestingly when I asked my neuro specifically if I would then have to shield and he said categorically “no”. Hmmm. Think I’m going to opt to do that anyway as surely better safe than sorry…


newbie
2 months ago

@coralellis

Brilliant news that you feel so amazing. I have my first Ocrevus on the 27th, second dose 2 weeks later. I was told work from home 4 weeks if possible unless good social distance is possible at work. Wasn’t clear if 4 weeks starts with first dose or after second dose 🤔

All the best for the second dose!


heather_louise
2 months ago

I completed my second half dose yesterday. Didn’t have any negative side effects. A little sleepier than usual but not much else. Didn’t feel much different after first half dose but I’m definitely feeling some changes after 2nd half dose. Prayers for you and all of us in this fight and fingers crossed!!


sueh
2 months ago

Hi
I had my first dose on 7th and my second dose is due on 21st. I am similar no side effects which I am pleased about. My neurologist has said that whilst I need to maintain social distancing I don’t need to shield. I am more or less shielding. It’s strange how different health authorities are saying different things.
I hope your second dose goes well!
I didn’t know about the Ocrevus groups on fb which I will have a look at.
SueH


pommors
2 months ago

So pleased it all went well and you are feeling good. I have to admit to watching with interest as I have been accepted for Ocrevus this week, hopefully having my first half dose within 8 weeks.
Thanks for the FB tip as well
Take care x


coralellis
2 months ago

Hey guys.
Sorry I havent replied, been really tired since Wednesday afternoon!!! Only just starting to have some energy.
I think each hospital is giving there own advice based on how many covid cases there are in that area.
I have a cupboard full of all the naughty treats that you should not eat to keep me going!!!!
Coral x


jacqui_grose
1 month ago

As I understand it, the length of time you have to shield depends upon several factors in addition to ocrevus like your edss, any other meds, recent steroids use, the infection rate in your local area, what your individual risk would be (what you do for a living) etc. That explains the inconsistency.


mser79
1 month ago

Hello.
Was just wondering if anyone could let me know how you felt in the week after the first and second infusion? I’ve only booked one day on sick leave for recovery after the infusion day and was wondering if that was optimistic?
Did anyone have bad infusion reactions?
@coralellis @sueh @heather_louise
Thank you


coralellis
1 month ago

Hi @mser79. I had a slight reaction half way through my first half infusion (itchy ear!!!!) Felt fine when I got home but for 4 days after I was really fatigued. Had my second half dose yesterday with no reaction and so far no fatigue. I did take antihistamine tablets for 5 days prior to my second dose, not sure whether that is why I had no reaction or has helped with the fatigue! Good luck with your infusion.
Coral x


sueh
1 month ago

Hi mser 79
I have had both doses and no reactions. I did feel fatigue the following day after both doses. So I would recommend resting. Hope this helps.
Good luck.


mser79
1 month ago

Hi @coralellis and @sueh. Thanks for that!


jen49
1 month ago

I had spoken to my neurologist about possible trying this out as I’ve tried every other drug on the market. It’s PPMS that I have, but he said he didn’t think I would find any benefit from it. Disappointed. 🙁


heather_louise
1 month ago

I’m so sorry my reply is late. I just got the notification by email. Weird. Anyway, I didn’t have any negative reactions other than messy sleep. By that I mean waking up at weird times and not being able to get back to sleep. I’ve completed both parts of my first dose. I haven’t noticed much change yet but fingers crossed. I hope you are well.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.