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!
Ocrevus experiences & opinions - My MSAA Community
Ocrevus experiences & opinions
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Heyamy
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Hi Amy, my neurologist said that the breast cancer risk is equal to the risk rate for the whole population. I'm on ocrevus.
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.
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.
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.
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.
We always need to take into account the other MS drugs that folks were on when we try to make a link between PML & Ocrevus or Rituxan. There are zero cases of that. Remember that just about everyone on Ocrevus was previously on other MS drugs since it is the newest. However, there are plenty of documented cases where Tysabri caused PML. I am told by my MS doc & my previous MS doc that PML with Tysabri is way under-reported. Scary.
I thought the Rituxan people were also on methotrexate when they developed PML, but it’s been a while since I looked that up.
How is your world?! I’ve been wondering about you and your daughter and hoping she was able to get her dose and suffer no downtime.
Kdali,
It is so great to be missed. Thank you so much for asking about us & thinking about our daughter. I have never heard of methotrexate or taking it with Rituxan (Ocrevus)... I will ask my daughter's MS doctor this month about that drug.
I took a long hiatus from all MS stuff when our 14 year old had all MS symptoms go away and she was stable on Ocrevus. We lived the past 6 months like she didn't even have MS. She didn't get sick any more, actually, she didn't get sick once & she is very prone to Bronchitis. Her one blurred vision eye restored itself completely even before she went on Ocrevus.
It wasn't until last month that we even thought about MS again: She was suddenly sooooo tired & lots of horrible headaches. We didn't know that Ocrevus was taking care of these problems- We thought she just hated her horrible school & that was what was causing the fatigue & headaches. As soon as she got her 6 month Ocrevus infusion 2 weeks ago, she returned to her normal high energy self with her bubble personality. Ocrevus really is a miracle drug for her!
Also, fyi, her first full Ocrevus infusion (two weeks ago) of 600 mg had awful side affects (much worse than her first two 300 mg doses) of fatigue, sore muscles, headaches, no appetite. She literally laid on the floor, followed me around room to room, moaning & crying for 4-5 days. On day 5-6, she transformed back to her bubbly self. So,,,, it was worth it. Some of this might have been from the IV steroid given with the Ocrevus, which I am kind of against & will push back on harder next time.
I hope you are well!
How could I forget?! A rare post here about a kiddo with MS really gets my heart. The Rituxan and methotrexate combo is for people with severe RA and a few other rare awful combination of diseases 😵
YASSS, FANTASTIC!!! 🎉🎉🎉🎉 Happy tears for you both 😭👏🙌🏻 Yes, I am dreading my first full dose since I had an unpleasant 3 days last time, but it will be worth it a week later! I don’t think I could handle the histamine reaction if I went without the steroid, but my body gets mad easily and I’m old 🤣
Please let us know how the next one goes! Again, super happy for you, ty for responding 🥰
You are so kind, I will relay this to my daughter. 
And re: methotrexate being an arthritis med- no wonder we hadn't heard of it. Thanks! Will be in touch!
Oops, forgot I am not supposed to use names... can't help it.
You can edit your response to remove the personal names, just saying 
How do I edit it?
Nevermind, just figured it out. Thanks!
At the bottom of your reply, there is a 'more' word, click on it and you should see the option to edit your reply. I use it all the time to correct typos. Hope this makes sense and helps
Well, it’s not just for arthritis...it’s technically chemo and use to be used for MS before better drugs came along. I’m not very familiar with it but I know it’s still common for people with RA, which kinda blows my mind because there are better drugs??? But maybe it’s similar to putting people with MS on shots first and waiting to bring out the more effective meds 🤷♀️
I’m so glad your daughter is on the most effective drug!!!!
You're not old, kdali
Heh, you’re sweet! 🥰 I decided that every relapse is like dog years, you add 7 to your age 😬 WOOF! I’ll be turning 74 in a few weeks 🎂
I shoveled snow last night after V went to bed 🤣 32wks 🤰I was so mad because it froze over while my husband was out of town 🙄
This old dog is paying for it today, but my driveway is NICE! 🎉⛄️
So you're saying that the 70's are the new 30's?
🤣🤣🤣 I guess I am!
Did you notice that you responded to info I posted 2 years ago when info on Ocrevus was sparse? I’ve had 20+ years since diagnosis and have been on multiple therapies including Tysabri while JCV+ so I’m fully aware of the risk of PML from that treatment. I do lots of research all the time on MS, current studies and treatments so I don’t need to be lectured. Thx.
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
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
Amy, have u had the biomarker testing (braca) to help determine your risk?
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!!
You’re welcome! Most definitely, progression needs to be stopped!
I dont know if someone said this yet, but Rituxan has been around since 1996 and never caused breast cancer in anyone. Ocrevus is a slightly improved formula.
It was explained to me that there is ZERO Breast Cancer Risk. Those trial results showed the same level of Breast cancer as the rest of society given that the majority of MS diagnoses are women in their late 40s. The trial group for Rebif just by chance had less women who got breast cancer. Secondly, Ocrevus is essentially Rituxan which has been around since the 90s, and there hasn't been ONE documented case of Rituxan causing Breast Cancer. So go forth with confidence!
I can only wish you well, there’s no way I would ever offer advice on whether you should or shouldn’t take a med. the more you talk to the pros, the better ammunition you’ll have to make a decision.
I support whatever you decide.
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