After first infusion no change in progression

Discuss Ocrelizumab, a monoclonal antibody treatment for MS.
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vender
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After first infusion no change in progression

Post by vender » Tue Sep 11, 2018 5:04 am

Hello all after my first infusion five months ago I feel no different at all. I am coming up on my second infusion and was wondering should I even bother?
I feel as if everything is progressing at the same alarming rate. I have been told after the first infusion I should feel better but I am not.
I am PRMS.

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jimmylegs
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Re: After first infusion no change in progression

Post by jimmylegs » Tue Sep 11, 2018 8:12 am

i can't comment but from xp but it is good to hear yours, even if it's nasty that it's not alleviating your problems. i had a bit of an episode earlier this year and the pressure is on to get me into the drug client demographic. ocrevus is on the list of options i'm meant to be considering.
so far, from my perspective the episode taught me only not to get overconfident followed by lazy re self care!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Anonymoose
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Re: After first infusion no change in progression

Post by Anonymoose » Tue Sep 11, 2018 10:18 am

Hey guys,

I posted a link in a response to vender’s other current post re:walking. Don’t have time to dig up that link again but it lists some micronutrients essential to Rituxan’s (cd20 mab like ocrevus) effectiveness.

Rituxan seems to have done well by me. Should be starting round two tomorrow but billing issues. Sigh.

‘Moose

Anunymouse
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Re: After first infusion no change in progression

Post by Anunymouse » Wed Oct 17, 2018 6:11 pm

My neuro said to hold judgement until after at least a year. I'm up for round 4 next month.

Kheuer
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Re: After first infusion no change in progression

Post by Kheuer » Wed Oct 31, 2018 4:29 am

The clinical data says 2 years on ocrevus is needed to see a cessation of progression. Google the emerging results, Ocrevus is actually helping some patients recover LOST function after 4 years. Walking further and in less time.

I'm supplementing my Ocrevus (only initial dual infusions in May so far, 1 month post diagnosis), with a partial Klenner protocol.

I'm also trying to source ascorbyl-2 phosphate, it has been shown to increase oligodendtocyte differentiation and proliferation, and increase myelination by 30%. And it's a fatty acid form of vitamin c that has been fed to livestock for years.

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