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?
Does anyone have an experience with Ocrevus that worsens progression?
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Re: Does anyone have an experience with Ocrevus that worsens progression?
Ocrevus has a warning for PML.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?
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.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.
tysabri-antegren-or-natalizumab-f11/top ... ml#p173579
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Re: Does anyone have an experience with Ocrevus that worsens progression?
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!
Re: Does anyone have an experience with Ocrevus that worsens progression?
This is a brain on PML. viewtopic.php?p=258324#p258324 You don't want this. Nobody does.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!
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Re: Does anyone have an experience with Ocrevus that worsens progression?
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