My MSAA Community
3,662 members6,823 posts

Ocrevus experiences & opinions

Hi, my name is Amy. I currently have SPMS after having RRMS since 1998. I have to use cane, walker, and/or wheelchair already. Lately my left leg is getting worse too. I am supposed to start Ocrevus soon and would love to have your advice on two things... how were your side effects and do u think I’m crazy being that my Aunt and mom just had Breast cancer. The MS specialist said if it was her that she would start it. She thinks the tiny risk isn’t high enough to not try it. Just to try hard to stay away from getting sick and keep getting your mammograms just to be sure. I’d appreciate any help you can give, I am a little nervous. Thank you!

18 Replies
oldestnewest

Hi Amy, my neurologist said that the breast cancer risk is equal to the risk rate for the whole population. I'm on ocrevus.

5 likes
Reply

Thank you, I was thinking about that. Good to know.

4 likes
Reply

Welcome, Heyamy !

I think that with every medication, even Tylenol, we have to weigh the benefits against the risks. What might be best for you may not be best for me. If it were me, I think I’d want to try to arrest the MS as much as possible. Iona60 has a good point about the cancer risk numbers.

Whatever you choose, I pray your progression stops and that you have peace of mind. Let us know what you decide.

6 likes
Reply

Thank you. Isn’t that the truth. Those commercials are like... u could get this or this or even die! Really? So I guess that shows you that their data is maybe just, not a fluke but a rare or would’ve happened even if they weren’t taking situation.

7 likes
Reply

You can see if your neuro has the same take about the risk as mine does. I'd also ask if he or she knows if rituxan has shown any increased risk for breast cancer. It is very similar to ocrevus and had been used off label for Ms for over 10 years. I asked my neuro if there were any PML cases in Ms patients on rituxan and he said not that he knows of.

1 like
Reply

Hi Iona60! The info I’ve found on rituxan and PML incidents is that there have been PML incidences in patients taking rituxan for RA and lupus but none so far it seems in MS patients. This data does not give me confidence that MS patients are safe from PML when taking either rituxan or ocrevus.The incidences of PML when taking rituxan seem lower than for Tysabri but no one should be fooled into thinking they are nonexistent. Just my opinion.

1 like
Reply

Hi Heyamy lovely to meet u I've started Tysabri and there are a lot of risks with it but im being monitored and I've got to go for it. Weighing up the risks and the benefits is all u can do hun take care xxx

6 likes
Reply

Hi Amy, nice to meet you. I know what you mean about being nervous. My sister has breast cancer. My neuro said if I was his sister he would want me on Ocrevus. I’ve been on it a year now. I haven’t noticed any improvements yet, but feel like it’s a smart choice for me. These big decisions are so hard to make. My Best, Linda

3 likes
Reply

Hi thank you for your thoughts!

1 like
Reply

Amy, have u had the biomarker testing (braca) to help determine your risk?

3 likes
Reply

No I will see about getting that. Thank you for mentioning that

2 likes
Reply

Great thinking erase! 😀

2 likes
Reply

Sorry for the typo erase. 😬

1 like
Reply

Welcome to the group Heyamy !

1 like
Reply

Thank you!

1 like
Reply

Heyamy welcome! I recently started Ocrevus in January. I know it has side effects but so does everything. It does hit home when you know someone close to you that has breast cancer. My cousin had it. It spreaded to different parts of the body. She passed from it. We were a day apart. I still decided on Ocrevus. Because just like you. I have cane and walker. The left leg is worst. I take my chances with Ocrevus. I hoping to eventually walk straight without assistance. Good luck with everything heyamy!!

2 likes
Reply

Thank you. I am feeling better after all of your comments coming in. It’s worth a try to stop anymore progression!

1 like
Reply

You’re welcome! Most definitely, progression needs to be stopped!

1 like
Reply

You may also like...