Last reply 3 weeks ago
Ocrevus

Morning! I was due to start Ocrevus but this has been put on hold due to the current pandemic. I’m currently waiting to commence tysabri instead.
Just wondering if anyone else is in the same situation? I had been on Copaxone but the injections were leaving craters all over me and between the burning and then itching I just couldn’t cope!
Has anyone been able to start Ocrevus recently?

I’m based in Belfast N. Ireland.

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gem7681
1 month ago

Hi I am in the same situation due to start Tysabri on Friday but my chosen drug is Ocrevus. I am currently on Tecfidera but had a relapse and a new lesion so am switching. I plan to change to Ocrevus in the long term, only take Tysabri in the short term.


stumbler
1 month ago

@jen4s , the Covid-19 precautions are changing quite rapidly, whether sensibly is yet to be determined. So, I’d keep talking to your medical team to see whether you can now start Ocrevus as originally planned.


jen4s
1 month ago

@stumbler I will give my team a shout tomorrow to see. I know things are changing rapidly at the moment. Ultimately Ocrevus is what my consultant wants and it would work well with the 6 mommy infusions.
Monthly infusions with a 6 month old and a 3 year old won’t be the easiest to manage with limited childcare options!!

@gem7681 I hope all goes well later this week!


shadowfox
3 weeks ago

Hi @jen4s, I’m in Belfast too 🙂 I’m also on Copaxone but have been given info about Tysabri and Ocrevus as it looks like I’ll be changing DMT. I had been wondering about starting Ocrevus in the current circumstances and if it would even be possible. The 6 monthly appointments would be better for me too. Where do you have to go for your Tysabri infusions?


heather_louise
3 weeks ago

I was due to start Ocrevus in March. Got put on hold but got a call a week ago and starting 7/1, god willing!


itsmewithms
3 weeks ago

I had my half infusions last fall and my first full infusion in April. I’m in the US. They gave me the option of pushing my infusion to May instead but I thought our local C-19 conditions would be worse in May than they were in April (and I was right) so I went ahead with it. All went well.

They had closed down many of the clinics infusion centers so I had to go to a different one that does not have private rooms but rather curtained enclaves. Due to this I had to wear a mask the entire time which caused a dry throat. Otherwise all was well.

You will see a lot of posts by @dominics in the last months regarding C-19 and likely some on Ocrevus as well. Dr G and Dr Boster on the various DMTs and C-19. From my Neuro, those experts and my understanding the impact of depleting the B-Cells (which is what Ocrevus does) can actually be beneficial in reducing that auto-immune phase of C-19 that is so dangerous. I went ahead with Ocrevus and think that is the current recommendation.

Dr Boster C-19 and DMTs https://www.youtube.com/watch?v=cwSj6f6R3oE&list=PL3a4GpjWLtCgf_fE-lLMHkBsIuBhiNh4Y&index=3&t=12s

Dr Boster C-19 and Ocrevus https://www.youtube.com/watch?v=eo_e-d2tJeg&list=PL3a4GpjWLtCgf_fE-lLMHkBsIuBhiNh4Y&index=2&t=23s


ray_thomas
3 weeks ago

Hi

I am due my next 6 monthly infusion in July ( MRI scan next week ) at Kings College Denmark Hill

Not heard anything – so I’m hoping it will still go ahead

Ray


dominics
3 weeks ago

@jen4s despite there seeming to be guidelines from the ABN I can think about 1 local case where interpretation and implementation of these barriers between hospitals.

This makes it v difficult for us – the patients – to form a view and, more importantly, trust the advice.

If I were you I’d be insisting on clarity, writing everything down (get help with this from a friend or family member), all that anything ‘they’ choose/decide is recorded in the notes. All civilly but assertively.

The thought in the doctor’s head, of they will consider Oc at all – is risk benefit.

Though, as every day passes the idea that Oc may present an additional risk is less and less of an issue.

Good luck and feel free to ping qu here.


karlsohare
3 weeks ago

Hi I’m in the exact same situation but I relapsed on compaxone and pandemic happened and hello tysabri.. Iv had my first infusion and due for my second in two weeks.. Iv been fine with it so far fingers crossed felt a bit nauseous but I didn’t last long… good luck I’m just awaiting jcv results x

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