Does anyone have an experience with Ocrevus that worsens progression?

Discuss Ocrelizumab, a monoclonal antibody treatment for MS.
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motivation
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Does anyone have an experience with Ocrevus that worsens progression?

Post by motivation » Wed Jul 08, 2020 7:25 pm

When I was on Abaugio I felt like things were stable in a sense. Sure I had foot drop. But I felt as though things were manageable.

Now today with my 4th infusion of Ocravus, I feel like my right side is weaker and there’s more foot drop. Has anyone else experienced anything bad with this drug? What should I do? Talk to my neurologist about getting off of it?

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NHE
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Re: Does anyone have an experience with Ocrevus that worsens progression?

Post by NHE » Thu Jul 09, 2020 3:19 am

motivation wrote:
Wed Jul 08, 2020 7:25 pm
When I was on Abaugio I felt like things were stable in a sense. Sure I had foot drop. But I felt as though things were manageable.

Now today with my 4th infusion of Ocravus, I feel like my right side is weaker and there’s more foot drop. Has anyone else experienced anything bad with this drug? What should I do? Talk to my neurologist about getting off of it?
Ocrevus has a warning for PML.
Genentech wrote:Progressive Multifocal Leukoencephalopathy (PML): PML is an opportunistic viral infection of the brain caused by the John Cunningham (JC) virus that typically only occurs in patients who are immunocompromised, and that usually leads to death or severe disability. Although no cases of PML were identified in OCREVUS clinical trials, JC virus infection resulting in PML has been observed in patients treated with other anti-CD20 antibodies and other MS therapies and has been associated with some risk factors (e.g., immunocompromised patients, polytherapy with immunosuppressants). At the first sign or symptom suggestive of PML, withhold OCREVUS and perform an appropriate diagnostic evaluation. MRI findings may be apparent before clinical signs or symptoms. Typical symptoms associated with PML are diverse, progress over days to weeks, and include progressive weakness on one side of the body or clumsiness of limbs, disturbance of vision, and changes in thinking, memory, and orientation leading to confusion and personality changes.
You may want to contact your doctor to get evaluated just to be safe. Of the people who survive PML, it causes moderate to severe disability in about 87% of patients.

tysabri-antegren-or-natalizumab-f11/top ... ml#p173579

motivation
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Re: Does anyone have an experience with Ocrevus that worsens progression?

Post by motivation » Sat Jul 11, 2020 8:01 pm

Thank you so much I’m going to look into this. I feel worse off on Ocravus than I did before. Like wtf I thought this was supposed to be some game changer lifesaver. Nope!

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NHE
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Re: Does anyone have an experience with Ocrevus that worsens progression?

Post by NHE » Sat Jul 11, 2020 9:30 pm

motivation wrote:
Sat Jul 11, 2020 8:01 pm
Thank you so much I’m going to look into this. I feel worse off on Ocravus than I did before. Like wtf I thought this was supposed to be some game changer lifesaver. Nope!
This is a brain on PML. viewtopic.php?p=258324#p258324 You don't want this. Nobody does.

HarbourBoy
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Re: Does anyone have an experience with Ocrevus that worsens progression?

Post by HarbourBoy » Thu Jul 23, 2020 4:43 am

About two days after my last infusion I kinda crashed and burned for about a week or so. Seem to be back where I use to be now. Last one was five full doses. I feel some what stable on it with maybe some very minor improvements which is better than the slow steady progression I was in before it

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