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Ocrelizumab

Hi all, haven't been on here for a few years so feel like a newbie.

I'm having my first infusion of Ocrelizumab in November and am worried about the risk of cancer and is PML a risk and if so how is it monitored.

Doesn't help that I suffer from anxiety and I'm so worried I'll end up worrying myself into a relapse!

Can anybody help me please ?

Susan

I have MS

Facebook is probably your best bet for personal experiences.

https://www.facebook.com/groups/457945101467239/?hc_location=group

https://www.facebook.com/groups/330956817564661/

Hi I started Ocrevus with 2 other ladies in march this year,the first infusion is a half dose then 2 weeks later the second half dose.Believe me I was so anxious which didn't help and I did have some mild side effects .However just had full dose Ocrevus this week (12th)and I feel so well and the only mild side effect was a sore mouth.

I cant say about cancer/PML risk but i can tell you I feel so much more energised the best i have felt for some time.You bloods and urine are monitored  2 weeks prior to infusions and if any abnormal markers are highlighted this will be discussed with you (no problems for any of us so far)

The other 2 ladies who I keep in touch with are well and no serious side effects.

All the best

I have MS

Cheers Kerste, it sounds like good news for you and your new friends. Are you all in the PPMS category?

Susie R, you mention "worrying yourself into a relapse" before you begin Ocrevus in November.  I thought the new drug is only being offered to PPMS for now & funded by NHS England.  Although it's possible, but very rare, to have relapses with PPMS.

My MS Nurse has begun the arrangements for me to have a new MRI & a new, thorough assessment by a Neurologist who happens to specialise in PPMS.  Like you, I'm concerned about the side effects. 

Chrissie x

Hi ,

no all of us have been diagnosed with RRMS and Ocrevus has infact been prescribed for relapsing forms of MS and the only available DMD for PPMS which is currently offered in Birmingham ( i am not sure about other areas in the country)

I am due to see consultant and new MRI next month which will be interesting to see if there are any changes.

Day 5 following full dose Ocrevus and my legs still feel good better than they have for some weeks so I am hoping this lasts and that Ocrevus is reducing inflammation in my brain  and hence less disease progression (my Brain feels calmer,in the past before diagnosis my GP more or less told me I was neurotic imaging brain sensations/inflammation)

All the best

 

 

 

Reply

I started Ocrelizumab in January and so I have had 2 rounds of treatment so far! I have had scans that have come up all clear since my second infusion. Trust me I was anxious about those possibilities as well, but I think our mind does overexaggerate as these are rare occurrences, my doctor told me that they weren't plositive it actually caused cancer yet as there have not been enough trials but they have to disclose anything that could happen to us. PML is very rare and they will take bloods and scans every year to monitor the situation so if anything does happen they will know straight away and be able to help us. 

I would really try not to worry, I know it is hard but these are rare things that happen and it is best to try and relax so that your body is not tense and can let the medication have the best affect.

I hope this has helped you in any way - I would also reccommend drinking a lot of water in the morning before the infusion and eating something if you're up to it (it opens up your veins more so it's easier for them to inject - im sure you know :))

good luck x

Sorry I haven’t replied for a while but been suffering with my anxiety a lot.

As someone else mentioned I too have RRMS and was changed to Ocrelizumab as there had been more lesions on my MRI scan and I’d had at least one relapse.

I’ve now had my 1st two half doses and couldn’t say if it’s made a difference due to my anxiety problems.

Thank you very much for all the posts, I really appreciate it.

Hi Suzie

I had two rounds (getting ready for round 3) and the impact has been life changing. No more side effects, energy levels really good and my latest MRI shows an improvement overall.

good luck and message me if you want to. Know anything else.

Alex

Hi everyone 

Thought I'd give you an update, after a couple of weeks of my 2nd infusion I started to get a horrible taste in my mouth and everything tastes nasty. It's been 3 months now and the only glimmer of hope is that it does get better sometimes for a few hours but then goes back to horrible so I'm hoping that my sense of taste hasn't gone completely. The neurologist says it's nothing to do with the infusion or my MS. Just something else to worry about I guess.

Keep well everyone 

Susan

Hi ,

I was due round 3 of Ocrevus last week (and almost looking forward to it )unfortunately due to covid 19 mine and my ms buddies Ocrevus was cancelled due to depletion of  CD19/20 which may have a detrimental impact if we contract the virus.

Its all so very precarious at this current time but my sister who is an infection control nurse is adamant that to delay the treatment is necessary and I can see the point .We need all the immunity we can get at present.

Ocrevus for me does appear to have helped with reduction in anxiety ,bowel and bladder issues.

I have also now been told that I need baseline immunoglobulin bloods (which they have now taken twice and also base line MRI.I thought baseline tests would have been more beneficial to have had prior to commencing Ocrevus.

Im not moaning Im actually glad they are taking our brain health seriously.

Thank heavens for the NHS and to all those staff who work in the NHS THANKYOU.

Thanks for the reply kerste,

I too think that delaying my next infusion is sensible and will be asking for that tomorrow when the MS nurse rings me. It was nice to hear your sister's opinion given what her job is. 
I hope you get sorted with your tests.
Can I echo what you said about the NHS staff, where would we be without them.

Hi 

I've had my first two half infusions of Ocrelizumab in Nov 19. With the Coronavirus, the advice on this website says if you're scheduled for your follow up infusion there may be a case for delaying it. I've just received a letter from my consultant saying the treatment should continue , I'm really scared and don't want it, my anxiety is in overdrive, any advice please would be greatly appreciated.

Susan

Hi Susie, it is a tough one, but if I were given the choice to get my next infusion nearly on time - late May/June - I think I would be happy enough to go to along. If anywhere would be cleaned to the best level it would be the cancer and Ms infusion suites along with the entrances. It feels to me like airports after a security scare, probably the safest places on Earth. My call with my specialist is next week, so let's see if he offers it. Stay cheerful and try to enjoy the sunshine!

John

Hi.  I started Ocrevus in March 2019 after being on Tysabri for nearly 5 years.  I was transferred to Ocrevus as my JCV titre was slightly elevated and lesions had started to return in my spine.  Since starting Ocrevus I have been fine, although I did have a bad reaction to the drug in the chair about 20 minutes in to the infusion.  It was quickly dealt with by giving me an iv antihistamine - then I slept like a baby until the infusion was complete.  

Having the infusion only once every six months is so much better than having to be in a hospital chair every month.  I have my bloods checked every six months and an MRI every six months to check on the drugs efficacy. I am pleased to report I have had no reports of further lesions, but I still become incredibly fatigued at times.  I have had few problems other than mild reactions during infusion, but easily treated on the spot.  Try not to get too up tight, as I believe Ocrevus is a breakthrough when it comes to therapy.