B cells coming back 🎉: 18 mos after my... - My MSAA Community

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B cells coming back 🎉

erash profile image
51 Replies

18 mos after my last Ocrevus infusion my B cells are finally coming back. They were zero when checked at 9 and 11 and 13 mos after that last infusion. Now they are 1.7%

My understanding is that they need to be at least 10% to. Mount any minimal response to a vax. Rechecking in 6 weeks because the doc says they snowball back after they reappear.

Then I guess I re-vax 🙀 but glad the B cells have joined the party again 😊

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erash profile image
erash
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51 Replies
falalalala profile image
falalalala

I'm glad for you :)

Morllyn profile image
Morllyn

I hope their numbers come back up quickly. Take care of yourself.🤗

kdali profile image
kdali

Congrats!! 🎉 Ty for sharing! How many doses did you have prior?

erash profile image
erash

5-6

Amore55 profile image
Amore55

Yes, it IS time for a party! Congratulations! May they multiply quickly.

Iona60 profile image
Iona60

Yay! Are you switching DMTs? I'm considering Mavenclad, but would need my B cells to regenerate first. Neuro said that it may take 1 year. From your experience, sounds like it will take much longer.

twooldcrows profile image
twooldcrows

didn't hear about this before ,so i guess i will ask the doctor about it ,i have an appointment on the 17 th of this month.....thank you for the info...have a great day well actually a great future with good info on your MS...love and much happiness...

erash profile image
erash

I’ve read 6-18 mos. Longer return Bs for lower bmi .No dmt because they say I’m ppms so just healthy lifestyle.

jimeka profile image
jimeka in reply toerash

Did the Ocrevus not work for your PPMS?

Iona60 profile image
Iona60 in reply toerash

Wow. I didn't realize that your Dx had been switched to PPMS. Does your healthy lifestyle include dietary changes?

erash profile image
erash in reply toIona60

Healthy food, limited junk food. Following some of the stricter diet protocols stress me out too much and that’s not good for MS so…

Iona60 profile image
Iona60 in reply toerash

So funny, I'll use that line to respond to my dietary choices. "I choose foods that don't cause me stress."

erash profile image
erash

It definitely did at first…then seemed to make no difference 🤷🏻‍♀️

hairbrain4 profile image
hairbrain4 in reply toerash

That happened to me too. It seemed !Ike the last infusion was just saline.

Iona60 profile image
Iona60 in reply tohairbrain4

I mentioned that to my old neuro that some of my O infusions seem like "saline". His eyes grew wide in concern as there was a report here at the local hospital of one of the RNs substituting saline for pain meds. But, I doubt that any drug user would want to steal Ocrevus.

hairbrain4 profile image
hairbrain4 in reply toIona60

You would be surprised what people would do. They know that drug is expensive & can get a good price on the black market that sells to crooked doctors.

Iona60 profile image
Iona60 in reply tohairbrain4

Yikes! We'll never know if these invisible, side effect free drugs work or not.

kdali profile image
kdali in reply toerash

I am in that boat also.

Sandydemop profile image
Sandydemop

i wish you many many b cells. May they grow up to be big and strong and give birth to new little b cells of their own.

Sandydemop profile image
Sandydemop

i got my art supplies yesterday. You?

erash profile image
erash

yep, don't peek in the envelopes ;)

Ali5678 profile image
Ali5678

And without your B cells are you sick more often??

Neworleanslady profile image
Neworleanslady

Omg if it’s not one thing it’s another!

JSSimp profile image
JSSimp

Happy for you🙏🏾

greaterexp profile image
greaterexp

Hurrah! I'm glad they are coming back!

Hi! Im just wondering why your doc is checking your B cells. I also was on Ocrevus for 2 years and have been on nothing for the last 2 years . I know the B cells are slow to come back but I don’t understand how that effects the vaccines. I had 2 Pfizer vacs and then monoclonal antibodies when I got covid 6 months later. I just saw my neuro and she’s not concerned with the B cell count yet she does want me to get boosted ASAP.

erash profile image
erash in reply to

Because I had NO response to the covid vax’s

sailing42 profile image
sailing42 in reply toerash

Does this mean you stopped the Ocrevous infusions? my neuro was checking my Bcell levels each time before my next infusion but then he stopped testing because he told me they just didn't tests for b cell levels any more.. Really??

Sagesewer profile image
Sagesewer

I am so happy for you! I went through my 1st half infusion,2nd half infusion and 1st full dose 6 months ago. Very little change did I see. This month or next I’ll get another full dose. Have been feeling doubtful until I saw your comment. Thanks for restoring my faith in the medicine!

erash profile image
erash

Yes, I had stopped. Last infusion was Nov 2020

Tazmanian profile image
Tazmanian

Congratulations!

MSohio2021 profile image
MSohio2021

Please explain why that’s a good thing because I honestly don’t know. I thought the point of O was to get rid of the B cells - that they weren’t wanted? I’m just finishing 1year of O and I’m done. Maybe going to try Kesimpta next because I felt like O was an overdose for me! (I weigh 100 lbs)

erash profile image
erash

It is the point and I wish Ocrevus was still working for me but I didn’t think it was and weighing the pros and cons, I was more concerned about covid.

Iona60 profile image
Iona60 in reply toerash

Have you considered Evusheld? I'm placing a lot of hope in it as I never knew if any of the 3 vaccines worked or not.

erash profile image
erash in reply toIona60

My 3 doses of moderna showed no immune response on labs

erash profile image
erash

Yes…believe it or not the hematologist/ oncologist they referred me to because they didn’t believe my zero B cells at > 1yr were due to Ocrevus, nor the neurologist I’m seeing were aware of Evusheld. Neuro is referring me to infectious disease doc to discuss Evusheld. Grrrr 😖

mcknighm profile image
mcknighm in reply toerash

Do you know if Evusheld is covered with insurance?

erash profile image
erash in reply tomcknighm

Good question?

mcknighm profile image
mcknighm

when i asked my insurance about evusheld they said they never heard of it.

anaishunter profile image
anaishunter

glad for you. if you don't need Ocrevus every 6 monts than take it as a blessings. every 8 months or so work for me. always have blood tests to check. if your B-cells are not back up, you don't need it!

erash profile image
erash in reply toanaishunter

My neuros say they don’t routinely check B cells 😵‍💫

Sandydemop profile image
Sandydemop

so i'm in the not understanding camp. we want the B cells to come back but don't they attack the myelin? And i hope you are doing well overall. No matter what your B cells are doing.

erash profile image
erash

You’re correct. B cells bad…unless you want them in order to develop antibodies to vaccines. We need DMTs that specifically target the MS myelin attacking B cells. Drugs being developed 🤞

carolek572 profile image
carolek572CommunityAmbassador

That's what I understand, erash I was part of a study that measured my b-cells and my antibodies that I had after 2 shots. Not only did I have no antibodies ~ zero ~ but I have no evidence of ever being exposed to COVID! I have my doubts of the booster helping me. Until I am convinced of that, I am hesitant of getting it because I will be vaccinated but not protected ~ again.

erash profile image
erash in reply tocarolek572

that's why I got the Evusheld shots

carolek572 profile image
carolek572CommunityAmbassador in reply toerash

i am cautiously optimistic of Evusheld, erash :-D

erash profile image
erash in reply tocarolek572

Glass half full… I just received my second round since the FDA has adjusted its dosing🤪

carolek572 profile image
carolek572CommunityAmbassador in reply toerash

I am still full steam ahead with Ocrevus, erash :-D

erash profile image
erash in reply tocarolek572

Wishing you success with O. You might want Evusheld then…what does your Neuro say?

carolek572 profile image
carolek572CommunityAmbassador in reply toerash

I just started seeing a new neurologist here in Arizona. I will ask about Evusheld at my next appointment. :-D

mcknighm profile image
mcknighm

Today I received 2 shots of the evusheld 👍🏽

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