let Genetech know if you’ve had adverse immune effects from Ocrevus

[erash]

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 🙃

[erash]

Phone: [phone]

Hours: 24 hrs/day, 7

[Elizt3]

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.

[falalalala]

I'm sorry you are going through that.

[erash]

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

[Elizt3 in reply to erash]

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

[erash in reply to Elizt3]

You or the provider can file an adverse events report. Re. staying off--that's a discussion u should have with your provider.

Were you aware there's an inc. in abnormal Paps with anti-cd20 dmts?

[Elizt3 in reply to erash]

No I didn’t know that about paps!!? My neuro isn’t aware of any gynecological matters and O. Hmmm. Thank you

[erash in reply to Elizt3]

multiplesclerosisnewstoday....

[Elizt3 in reply to erash]

Thank you. That article definitely describes me. And I’m not sure how many neurologist are aware or are thinking of this issue.

[Tazmanian]

Thank you

[Jer29-11]

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?

[erash in reply to Jer29-11]

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.

[Jer29-11 in reply to erash]

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.

[starlight5 in reply to erash]

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

[erash in reply to starlight5]

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 .

[starlight5 in reply to erash]

Thank you. I have not had T cells checked. I will request they check my T cells when I get the next B cell labs drawn.

Are you still doing OMS, how is that going for you🤞

[erash in reply to starlight5]

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 😊

[starlight5 in reply to erash]

I never did get used to the taste of the flaxseed oil🤢

OMS, Wahls, Keto, Carnivore, the main thing is stopping the seed oils and processed junk foods.

[erash in reply to starlight5]

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. 🐄

[starlight5 in reply to erash]

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.

[erash in reply to Jer29-11]

Could you provide a link to that publication. Thank you

[Jer29-11 in reply to erash]

Let me see if I can find it! It was awhile ago!

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.

[Jer29-11 in reply to erash]

pubmed.ncbi.nlm.nih.gov/218...

[Jer29-11 in reply to erash]

It’s titled: Maximally tolerated versus minimally effective dose: the case of rituximab in multiple sclerosis. March 2012

[erash in reply to Jer29-11]

Thank you so much! 2012! Wow! Im going to see if I can get access to the article. Thanks again.

[Jer29-11 in reply to erash]

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.

[erash in reply to Jer29-11]

No worries. I have university access and got it 😊