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Anonymous
Ocrelizumab

Hello, I am under 30 yrs of age and have recently been diagnosed with relapsing remitting MS and have been offered the Ocrelizumab medication. I am devastated about the news, has anyone got any information or experience about this drug? I've read loads of information online however it would be really helpful if I could contact someone who's had experience with the drug.

Anonymous

don't be devastated, things could be way worse. Ocrevus reduces relapse rates by 90% or something mad. A lot is being done for MS, you will be fine

I've only read about this drug .in fact I. Am waiting to see my neurologist soon 

And I'm think I will be suggesting that I will be only to happy to try it.licensed or not .

Anonymous

I am currently on Ocrelizumab, it really does help.  It's an infusion administered via IV.  It really does help & I have noticed a difference.

Could you share a little more please?
Are you in the UK? How long have you been on it and how does it help?

Anonymous

I have been on it a year now.  It helps lessen the tremor I have, I am not as tired as I usually am.  I have had no more lesions appear.  It seems to work for me so I am quite happy.

I have MS

Thanks anon you're the first person I've read about who actually takes it! Would you mind offering further info?

How did you receive Ocrelizumbab?

Was it a private prescription or other method to obtain it?

Did you speak to your Neuro? 

Was it offered to you as a trial?

Are you resident in the UK, and if so, do you use the BUS as a pathway to Ocrelizumbab?

Sorry for asking specifics but many with PPMS are very hopeful, especially if it helps us.

Many thanks, Chrissie

Anonymous

Hi Chrissie, I receive Ocrelizumab as an infusion.  I am there for about 6 hours in total.  I have an infusion of steroids, followed by Ocrelizumab.  I did speak to my Neuro, he was the one who suggested it as I was having too many relapses.  It was offered as a trial, but as this new drug has suited me I am staying on it.  I haven't had any side effects at all.  I live in the UK, not far from Reading.  I am lucky to have my parents and sister who take turns in driving me to London :-).  I hope that helps a little but please let me know if you have any other questions :-).

Anonymous

Hello thank you very much for the information. 

I have been offered the drug too and recently had the blood tests done, I'll soon be receiving my first infusion.

I'm quite nervous about everything as the diagnosis came as a huge shock and I'm so relieved and thankful that I'm able to message you, it sounds like you've taken very well to the drug and it's having a positive effect.

Can you please expand on how frequent your relapses were and how they've changed since taking the drug?

To date I have had 2 incidents, about a year apart where my eyes have been affected, it was during the second event late last year that I was diagnosed with RRMS.

I am just wondering how I will know what effect the drugs having on me with my incidents being so far apart.

Also you mention that no further lesions have happened, how is this monitored and how frequently?

Thank you very much

 

 

Anonymous

Hi, I had about 3 relapses in less than a year.  I have an MRI just before treatment, then another one 8 weeks after treatment.  I do have to have an injection with dye both times, this highlights parts of the brain.  This also helps to determine if any new lesions have appeared.  I too have had problems with vision.  If I am honest they are a little better, that is one thing I have noticed.  Admittedly it hasn't helped with my short term memory!!  Like you, the news I had MS had quite a devastating effect on me, I am a single parent as well, but have to say my daughter who is now 17 has been remarkable.  I can understand your nervousness, but honestly once you have had your first infusion, it gets a whole lot easier.  I hope this helps a little.

Anonymous

Hi, thank you very much for sharing your experience, it is much appreciated.

Have you had any relapses since being on the drug?

It is very nerve wracking, however I am hoping that my experience will be as positive as yours.

Hi, thankfully I have had no relapses since being on Ocrelizumab.  It is very nerve wracking but once you've had the first infusion the rest will be a breeze.  They do keep you in for about an hour or so after your infusion just to make sure you are okay.  There is always an MS nurse around to keep an eye on you.  They will also come and check your blood pressure and temperature every 30 mins or so.  So you will be monitored quite closely which is always good :-).  I hope this helps put you at ease.

I'm finding it very difficult to follow the thread now, with all the various Anonymous.

Anonymous

Thank you very much Claire for the information, it's very helpful and I'm extremely grateful.

I have MS

Hey Poppy, I know what you mean about so many Anon posts, but "think" there's only 2 Anon people, one receives Ocrelizumbab and the other is finding out.  I assume not everyone taking Ocrelizumbab wants to be identified, even though none of us know anything about other members.

It's terrific to discover this drug is working so well with RRMS.  The PPMS people who never have any Remissions are most desperate to try what appears to be the first medication to reach this stage. 

Still awaits U.K NICE approval in England though.  I sent an email via the MS Society which was forwarded to NICE explaining how PPMS affects me, the low quality of life and the need to licence Ocrelizumbab asap.I

Chrissie x