I reported my prolonged B cell depletion (3 yrs post last infusion) and added T cell decreases to
Genetech. And my concerns that Ocrevus dosing should be weight based. The universal 600mg dose may be overdosing for people with low body weight.
I mentioned that there were others in this chat room that had similar immune issues and they would like to hear from you.
They took a thorough history (20-30 min.), were respectful, and seemed genuinely interested. The adverse reporting # is on the Ocrevus site. I’ll post that later. The site is separate from the prescribing site to prevent conflict of interest.
While this may not help those of us who have already had this experience it could help future users.
By the way, I see that the pkg. insert now recommends monitoring B cells before, during, and after discontinuance unti B cells are repleted. Too bad some of our neurologists are not aware of this 🙃
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erash
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I wonder how we know if we are receiving too high of a dose while we are on Ocrevus? It sounds like one only knows until they go off the med and then wait for months/years for B cells to return.
it’s why they need the studies. It’s up to the researchers to determine how that study can be accomplished. They’re doing it for those with obesity to determine if higher doses are needed. Elizt3
Do we need stay off DMTs until our CD 20 returns to normal, if we want to switch DMTs?
I'm not sure what to do - I have had a gynecological infection since January, went to a specialty gyn clinic, and they told me that I'm the 4th woman they have now seen who is on a b cell depleting medication and experiencing this unusual infection - do I report my situation to Genentech? Been on O since 2019
I’m sorry you’re going through this, but thank you for letting us know. I’m not on ocrevus, but Rituximab, which is similar. My neuro and colleagues actually were published in a medical journal for research on low dose Rituximab infusions. They found that the low dose was just as effective as the higher dose. It seems like it would make sense that people would need different doses, especially taking weight into consideration. We do that with most other medications.
Also, just wondering, did your dr not check your labs before or after infusions? If not, how would they know the efficacy?
No. They only checked my labs when I demanded it bc I wanted to know if I mounted antibodies to the covid vax. Basically, neuros looked at me like I was a hypochondriac.
Wow, I’m very surprised. I’m so sorry 😣. My dr checks labs before and after infusions. He’ll even delay an infusion if my B cells aren’t coming back. He likes them to return to a low normal level before the next infusion.
I asked for labs before each ocrevus infusion and was always told it wasnt necessary and got the hypochondriac look too. So the last few years I decided to stretch my infusions several months longer then the normal 6 months. They finally ordered labs and testing for Bcells last year before my 8th infusion. It has been 9 months since my last infusion and I still have no Bcells so they are having me wait another 3 months and then test again.
I take it you are not on any DMT at this time, would it even be an option if you wanted to be🤷♀️ I have a feeling I might be done with ocrevus also.
Did any other labs get concerning, like immunoglobulins
I’m not on any DMTs. If the purpose of Ocrevus is to suppress the b cells, then it did its job and I didn’t need another infusion. Now that my B cells are coming back. I guess I’m no longer protected. Yes my T cells also decreased. According to Dr. thrower from the shepherd center in Atlanta, they are checking both B and T cells and will stop in infusions if they notice a drop in T cells .
I really like OMS. But I’ve never been much of a meat eater, so vegan suits me well. Regarding OMS and benefits for my MS, 🤷♀️. I don’t think it’s making my MS worse 😊
I learned that flax seed oil that tastes bad, fishy, is actually rancid. Good flax seed oil has little to no taste.
But I agree. Eliminating processed foods is likely the most important thing. Though, there’s research supporting no dairy because it has proteins that in simple terms mimic MS. 🐄
Yes, I remember that. It is the one thing all ms diets seem to agree on. I dont notice anything different with or without dairy, but I am giving it up again Dec 1.
Also, I’m on the smaller side as well and my body cannot handle a full Rituximab dose or an increased IV rate. I’ve been getting half of what is “recommended” for the last 5 years with the same results.
You’re welcome! I was able to access it because I was in school in 2020 and I had access to all the medical journals. I can’t anymore though! I may have actually saved it somewhere, but I’ll have to find it! If I do, I’ll send it to you. Also, it looks like there’s more/newer research now that supports their original research.
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