ocrevus

Everyday living
1

I have another lesion according from my last MRI. I’m currently on rebif and my nurse has suggested to switching to ocrevus. Is anybody on this?

2

I have been advised to start Ocrevus, looking for others experience positive and negative

3

Is ocrevus now available in the UK and if so under which conditions please

4

I believe it’s available as a DMD for RRMS.

5

I had 10 blood tests and swabs tests last week testing for everything. They all came back clear but have to wait a further week for the TB test. My MS nurse says that I may start it on the 10th.

I must say that I’m nervous as I’m the very first MSer at Kings College London to go on this.

6

Hi,

I have been on Ocrevus/Ocrelizumab for 2 years already. I was on Tecfidera and Gilenya before, and this seems to be working better for me. The MRIs have been stable so far.

I was part of a clinical trial called CASTING:
https://www.clinicaltrialsregister.eu/ctr-search/trial/2015-005597-38/GB
https://www.ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialId=37836

I was enrolled in the study at the Charité hospital in Berlin where I lived until recently. But based on the website above King’s College was one of the hospitals participating in the trial. So I would expect them to have quite a bit of experience with this drug already. I wish you good luck.

7

I think it is. At least based on this page:

My GP couldn’t give me a straight answer either.

8

Hi all,

So I see Ocrevus can be prescribed if Lemtrada is not suitable.

Next question,

how often do you need to be monitored with blood tests etc

thanks

Adam

9

I usually went for blood tests, MRI, urine test, neurological examination on Friday and then had the infusion on Monday.
And this happened once every 24 weeks.
Apart from this I was sending them an email every 8 weeks telling them how I’ve been feeling, if I’ve noticed any side effects, and any other medication that I’ve taken. They were particularly interested in infections (colds, flu, etc.), because this can be one of the side effects. I’ve never noticed any side effects. I did have a few colds but not more often than before.
So I only had to go to the hospital twice a year. Which is pretty nice.
But as I said before, I was enrolled in a clinical trial so your experience might be slightly different.

10

survey done on Ocrevus.

11

UPDATE- I will be having the ocrevus treatment on the 12th! I’m very nervous

12

Wow. I’m not surprised you’re nervous. First patient at Kings!! They’ll look after you like royalty. The staff will be wanting its to go perfectly. So you’ll be fine I’m sure.

Let us know what it’s like, how the treatment is administered, after effects, just what it’s like.

Good luck Mem, you’re being really very brave, forging ahead where so many other people will follow.

Sue

13

UPDATE

I had my first treatment of a Ocrevus this morning which lasted for 4 hours. My side-effects were having a metallic taste in my mouth and a lump in my throat. After alerting my nurse he slowed the current of the treatment and the side-effects cleared up after around 45 minutes. I feel that it went well for me and look forward to having my second course in two weeks and then once every six months after that.

Disclaimer: everybody is different and reacts differently to disease modifying drugs. Please seek advice from your neurologist MS specialist.

14

I imagine you have a bit of IV steroids alongside the Ocrevus. That would account for the horrible metallic taste.

I’m glad so far so good Mem.

(Nice disclaimer!)

Sue