Still More on Orevus: Another article on... - My MSAA Community

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Still More on Orevus

BillD999 profile image
9 Replies

Another article on this new drug.

tischms.org/news/ocrelizuma...

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BillD999 profile image
BillD999
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9 Replies
jimeka profile image
jimeka

Thank you Bill, I hope everyone takes a minute to read this article. I know I don't want to take the new drug until they have more concrete evidence that it does not activate tumours. Cancer is a big killer in my family, breast, lung and bowel so I am staying away from anything that may instigate it. Ms and Rls are enough for me. Thanks for sharing, again well worth the read, blessings Jimeka 🦋 🌈

Raingrrl profile image
Raingrrl

Thanks for posting this Bill. I happened to be at my neuro's office today to see the social worker there. She brought up Ocrevus and said their researchers had just been celebrating the FDA approval. I talked with her about the tumor risk and she called in one of the researchers so I could directly ask about it. I asked the researcher if there is any specific information about the cancer risk. She hasn't seen any and none of their Ocrevus patients had developed cancer in the 7 years they had been participating in trials.

I know my neuro is going to talk to me about switching from Tysabri to Ocrevus at my appointment next month. At this point I don't know enough about the Ocrevus cancer risk to decide if it's a better bet than the Tysabri risk of PML that I have. I'm going to print the Tisch article to take with me to my appointment.

erash profile image
erash in reply toRaingrrl

Raingrrl i read something yesterday that said no identified PML with Ocrevus YET but that theoretically it's a potential risk.

Raingrrl profile image
Raingrrl in reply toerash

Hi erash !

I haven't seen any identified PML risk with Ocrevus yet either. The issue for me is that I've been on Tysabri for 5 years, I've been JVC+ the entire time and my last JVC virus index test showed that my index has increased into the 'high risk' category. Consequently my risk of PML has increased over time. For this reason, I'd like to be on something with a better safety profile and thought that might be Ocrevus. I agree with you about the theoretic risk of PML on Ocrevus too. One of the other newer drugs didn't show any risk of PML during their trials but it came out after the drug was 'in the wild'. I'm wondering if that might happen with Ocrevus too. I also leary of the tumor risk until it is better defined and there are more details.

Believe it or not, I'm a risk adverse person! I'm only on Tysabri because Copaxone stopped working for me. When this happened over 5 years ago, Tysabri was my only option.

erash profile image
erash in reply toRaingrrl

Raingrrl the YET I mentioned above is cited from a scientific report that states there is none yet but there is a theoretic potential 🙁 Scary

erash profile image
erash

BillD999 of course I'd rather not see that info but thank you for sharing! It would be helpful to know the sample sizes of those studies given The cancer numbers cited In the article.

Although 1 in 50 sounds like a pretty significant risk! I've also read that the #s were similar to the incidence in the general population, I wonder if general pop. Compared same age groups.? I also wonder about types of cancer identified?

Post marketing adverse effects will be important to follow.

I've read a cost of $65000/yr and wonder what the non Medicare patient assistance will be like?

Given all my "wondering" gives me pause 🙁

Morllyn profile image
Morllyn

Thank you BillD999 . These are the issues that I would like to see looked into further before and if I have to make this decision. I am kind of surprised that the FDA allowed it to be approved with these problems.

Royjr profile image
Royjr

Thanks Bill. This Is why people need to be cautious and aware of all the particulars before making this leap. This might be the best drug for treating MS, but we should be careful.

KarenUSA profile image
KarenUSA

Another article with good information. How is this new drug administered? Infusion, shots, pill?

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