#ocrevus - Shift.ms

10 Sep 2018 11:51Last reply 30 Sep 2018 16:02

UK: Ocrevus Declined by NICE for PPMS

This is hot off the press and has upset people in the medical profession, as well as UK PPMSers. There's already a campaign to contest this decision :- https://signup.mssociety.org.uk/page/30088/petition/1

38

@Robyn_C

6 Mar 2020 10:03Last reply 13 Mar 2020 15:34

Ocrevus stopped due to COVID19

I was supposed to have my first Ocrevus infusion today but it has been deferred in light of the coronavirus outbreak and I will be treated with Brabio for the time being instead. I had emailed some concerns to my hospital (The National Hospital for Neurology and Neurosurgery in London) as I was worr...

25

@StevenH67

11 Aug 2020 16:00Last reply 13 Aug 2020 06:53

1st Ocrelizumab / Ocrevus experience

Hi, just thought I'd share my experience of my 1st half doze from earlier today in order that someone else may get some use from it. 1st half doze completed today in Glasgow. So far, so good. I got out about 330pm. I was given lots of advice by lots of people. Seems to have worked well. Few sweets, ...

24

@CitizenK

17 Dec 2019 17:34Last reply 24 Dec 2019 14:41

Drum Roll for Ocrevus tomorrow...

So, tomorrow I go in for my first Ocrevus infusion after five or so years on Tecfidera, which is no longer working for me "too many relapses in recent times" I'm kinda nervous if I'm honest more so for a rejection or bad reaction to the change in DMT? Any tricks or tips for a brother, about to brea...

23

@DominicS

2 Jan 2019 10:21Last reply 4 Jan 2019 17:40

Ocrevus - Friday if all goes to plan!

I am scheduled for my first dose of Ocrelizumab this Friday. It has been a long campaign to get this. Am happy to share in DM's but don't want to subject y'all to an unsolicited shaggy-dog story about it. As with most things MS related, it is relevant to me but there are few details that can be take...

21

@hollylb10

3 Feb 2020 21:12Last reply 7 Feb 2020 14:55

Ocrevus - what to take with me!

So I am hoping to be approved for ocrevus and was told it takes quite a long time to have the infusion, could take all day. So of course my mind is over thinking and I wondered if there is anything I should take/want when I’m there? Will I want to eat, or will I not have an appetite? I can imagine ...

19

@coralellis

14 Jul 2020 16:20Last reply 30 Jul 2020 22:58

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!!! ...

18

@nobodyin

21 Mar 2020 23:50Last reply 4 May 2020 18:50

Ocrevus and Covid 19

Hi all, was due to receive Ocrevus on April 6th but, in light of current situation have put it back to May. Having PPMS I can't afford too many delays any advice?

18

@alephbet

19 Sep 2017 13:29Last reply 17 Aug 2018 17:45

Ocrevus vs Tysabri

Good morning, everyone, I spoke with my MS nurse about possibly switching from Tysabri to Ocrevus later this year. My neurologist isn't inclined for me to switch since "Tysabri is working so well for you." Meanwhile, I just read this morning that the neurology director at my hospital, Dr. Anthony ...

17

@Cathie16

11 Jul 2019 18:01Last reply 7 Apr 2020 20:14

I’m told NO to ocrevus

Not sure how I’m feeling but found out today I don’t fit the criteria for ocrevus because no new lesions since last scan even though my PPMS symptoms are worsening. Feeling pretty rubbish. Busy mum of 3 with job and doing a masters and everything feels so uncertain. Also got refused for blue badge t...

17

@Vixen

16 Oct 2018 16:55Last reply 22 Oct 2018 11:29

Us MSers, parliament and Ocrevus.

Hello friends, what a day I’ve had. My brother-in-law got me and him an appointment with an MP in Westminster today. It was about the decision by NICE to turn down Ocrevus for PPMS folk, like my sister. It was great to have the chance to talk about MS with someone who knew little about it, about our...

17

@Mlgilber1

11 Sep 2018 19:37Last reply 12 Nov 2018 13:50

1st Ocrevus infusion

I have my first half dose of ocrevus tomorrow. I’m super excited and nervous at the same time!

17

@cazsmith

30 Sep 2019 18:20Last reply 17 Oct 2019 18:52

First dose Ocrevus experience

Just posting my experience of my first half doses of Ocrevus, as I found reading other people’s experience really helpful when I was deciding treatment! The infusions went smoothly! Once the cannula is in, you have a dose of steroids and antihistamines which can make you feel sleepy. The Ocrevus in...

17

@Bing15

20 Jun 2019 16:23Last reply 3 Jul 2019 10:46

Ocrevus first infusion

Had my first infusion of ocrevus today, all went really well until the last 10 mins when I developed a rash on my face, they immediately stopped the drip and abandoned the last drop and gave me extra antihistamines, 3 hours later I’m home and seem fine, fingers crossed I can continue with my second...

16

@Murray

23 May 2020 06:57Last reply 30 Jun 2020 14:28

Ocrevus

Hi Has anyone had any news regarding DMT treatments in the UK now? My MS nurse is waiting to hear when they might be able to re-start, and I am on the list for the initial Ocrevus infusion - hoping this will be soon, of course.. Wishing you all well.

16

@Lucy41

13 Mar 2020 13:49Last reply 14 Mar 2020 15:15

Covid-19 Ocrevus and work

Are there any other people who have very recently had Ocrelizumab or similar and work in the public sector? Given the current situation with Covid 19 are you continuing to do so? I am contemplating what I should do going forward. I work in an infants school and I was banking on schools closing for a...

16

@cazsmith

17 Jul 2019 15:28Last reply 11 Sep 2019 09:00

Ocrevus

Hiyaaa, I'm 21 years old- final year student nurse living in Leeds. I was diagnosed with RRMS in June 2019, and was advised to choose from Tecfidera and Ocrevus. It was such a tricky decision but decided to go for Ocrevus- has anyone else been on this for first line treatment? and what have your exp...

15

@Helen_Hough

16 Feb 2019 20:49Last reply 1 Mar 2019 12:45

Ocrevus advice

Hi All, I will be having my first infusion soon of Ocrevus and ive been told about the before and during treatment but I am looking for any personal stories about the after bit. I wondered how people felt after their infusions, did you recover well or did it take some time? Did you have any side ...

15

@Teide_Barrett

19 May 2020 16:38Last reply 23 May 2020 11:42

Ocrevus infusions

Hi I’m teide I’m 24 and I have RRMS. I was diagnosed in October 2018.. I spent 1 1/2 years on tecfidera but my ms just kept progressing. I started ocrevus last Tuesday and had my first 1/2 dose.. Tuesday I felt ok! I was surprised how well I felt on Wednesday but since then it’s been horrific! Sle...

15

@mser79

13 May 2020 09:11Last reply 15 May 2020 18:45

The restarting of Ocrevus after coronavirus delay

Hi After 4 years on alemtuzumab I was due to move to Ocrevus (following breakthrough activity) in April. Bad timing. I'm treated at the National Hospital for Neurology and Neurosurgery, and was told yesterday that infusions the new patients might not be available until September/October. A huge cau...

15