Just FYI. I did another round of blood tests prior to scheduling the next O infusion. Neuro says my immune system has not bounced back enough so he wants to wait. In the meantime, he told me to get the new COVID booster.
My last infusion was in Dec-2022, or 10 months ago and it was a 1/2 dose. O depletes my T-cells so much that he always wants them to come back to a normal level prior to scheduling the next round. I've been on Ocrevus for 5 years with full doses for the first 2 years, but it looks like I'm trending toward a 1/2 dose once a year.
I'm still protected because the B cells have barely started to come back too.
I'm not complaining about it. And it's not like the insurance is charging less. Just sharing the experience so that if you're on Ocrevus, get your blood tests done!
That said, I've not had any infection whatsoever. And it's not like my ms is "mild". I had a "severe" lesion load when diagnosed. I'm just a "petite" and at 57 year of age, it might make sense for me to get a lower dose.
Bottom line, be diligent about blood tests prior to Ocrevus infusion so that your immune system remains capable of protecting you from the nasty infections going around.
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anaishunter
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Thank you for sharing and the reminder. My neuro is finally running labs before infusions, which have thankfully been okay so far.
I have never understood ocrevus dosing not taking size/weight into account🤷♀️
I started stretching the time between my infusions too, going several months longer between and my ms neuro is okay with that, my local neuro is totally against it. I also have a standing order to check for bcells after 6 months.
I'm all for this! I requested labs and delayed dosing if appropriate, but was laughed at by the specialist 🙃 A half dose sounds amazing! I'm glad it's working well for you 🥰
My latest infusion has been delayed due to billing issues, anaishunter , and I have been concerned about the 5 week delay. Your post has comforted me somewhat in that it is not as big an issue as I am making it out to be. Thank you.
So my B cells finally inching to norm but Tcell down so they did a bone marrow Bx b/c it's been 3 yrs since my last infusion and they say it's not due to Ocrevus (Hah!). Good news is bone marrow ok, Bad news is I live in Orlando, 3rd world health care, and no one does labs routinely for O
I requested labs before each O infusion and was told no, it was not necessary. Yet I was always reading on here of others who had labs before each infusion. Now finally after 5 years they are being ordered routinely, without my asking 🤷♀️ makes one wonder
My neuro will not order my next infusion until she sees the lab work and says A-ok. I have it drawn approx 2 weeks prior my anticipated infusion. We don’t bother w B cell counts bc when done previously they were returning quicker than expected. On 5 month regimen.
Interesting how different providers are. Makes me realize how subjective our care can be at times and the importance of self awareness and advocacy.
Glad your bone marrow biopsy was good erash and that your b cells are heading towards normal. I’ve never had my Tcells checked despite all the trouble Ocrevus caused my immune system. The high efficacy drugs can be risky so I wonder why there isn’t a consistent protocol for monitoring the effects on our immune systems.
I wonder if we all need to file reports with the FDA or Genetech so that this is identified as a post-hoc issue that needs to be addressed. There seems to be a definite body weight related difference in effect and I’m wondering if there are also genetic mutations that impact effects?
agreed. there's definitively a need for different dosage on Ocrevus. And this has nothing to do with the ms severity. I don't know if it's body weight or specific characterictics of you immune system. Ocrevus is supposed to deplete your B-cells.
In may case, it also depletes my T-cells, which means a much weaker immune system. So it's got to be monitored closely.
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Ocrevus Infusion 
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