Ocrevus +10 months, new blood test, neur... - My MSAA Community

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Ocrevus +10 months, new blood test, neuro visit tomorrow

anaishunter
anaishunter

New blood tests show that my immune system has bounced back a bit, hope my neuro will be ok with scheduling the next round of Ocrevus treatment.

18 Replies
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greaterexp
greaterexpCommunityAmbassador

I hope you’re feeling well. Keep us posted about the infusion.

Hope your neurologist visit goes well in your favour, keep us posted please, Blessings Jimeka 😊

That's great news. Good luck with your neuro :) Keep us updated.

Does that mean that you have gone 10+ months since your last infusion, anaishunter ? What does your neuro check before they determine that it is time for an infusion? I am curious because I am also on Ocrevus and wonder if I can stretch the time between infusions a bit. Keep us posted and Keep Smiling :-D

My neuro always asks for a blood test at Infusion + 6 months. I'm glad because in my case so much of my immune system is destroyed by Ocrevus that waiting for my immune system to rebound was a must.

I hope all goes well

is there a reason you went +10 months without out an infusion? was it because of the virus?

Yes, there is a really good reason for such a long time before infusion:

- the neuro always request a blood test 6 months after the Ocrevus infusion

- in my case, Ocrevus destroys a lot more of my immune system (namely T-cells) than what the treatment is supposed to destroy (B-cells)

- the neuro does not want to do another treatment until my immune system is back to a safe range but before the Bcells can be back up to a level where I could be exposed to a relapse.

I would advice everybody to get a blood test prior to their next Ocrevus infusion.

In my case, I've not had any relapse.

I have blood tests scheduled for Tuesday, so I should have a better idea about these things after thats done. Thanks for sharing the info.

Here is what the neuro recommended in today's visit:

- Bcells are going back up so I'm starting to get exposed to the danger of relapse

- he offer several to options:

1) schedule full dose of Ocrevus treatment with the risk of depleted immune system and infection

2) go for a 1/2 dose of Ocrevus. This is a not approved, not test protocol.

3) adopt a less drastic treatment such as Tysabri (1 dose per month?)

4) opt for an even less invasive treatment.

I went for #2 because. Ocrevus is proven to put my MS at bay. I'm not ready to switch to another treatment and be worried for month as to whether it's effective or not.

So we'll schedule #2 and test 2-3 months later whether 1) it's effective against MS in that B-cells are destroyed but 2) T-cells are not getting too low.

Not really worried about being a guinea pig on this half dose not tested protocol. I trust my neuro to do the right thing for me.

Sorry, Have you second effects with Ocrevus?

Absolutely none. This is also why I decided to opt for Ocrevus . Works for me.

None? 1 at day? Sorry , I have Rebif. What tratament had you before Ocrevus?

I have inyecttions 3 at week since 2005.

I started on Ocrevus 2 years ago when I was diagnosed. So I've not been on anything else.

I would like no inyecttions but the RM is well at the moment with Rebif.

Thanks

I would like Ocrevus, but ...The RM is well at the moment, so Rebif works. But if Ocrevus hasn’t second effects I would like also. But ....

ahrogers
ahrogers in reply to Violonchelo

I was on Rebif for a year before Ocrevus. My MRI was stable but I had more numbness so changed. I have no side effects from Ocrevus except a few times my lymph nodes in my neck were a little tender for a week after the infusion but not really bothersome. Haven't had that the last couple infusions though. I definitely prefer it to Rebif! Some people have reported temporary hair thinning but it seems to be fairly rare.

I get my next infusion next Friday.

You should discuss your options with your neurologist.

Thanks. My neurologist likes if I change the tratament. But I am not

Sure to do it . In Barcelona MS told me that interferon of Rebig protect against the covid 19. So, now, I have maybe clearer my ideas, I don’t know. Je je Congratulations for your New Tratament! And thanks !

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