So kdali said something about “living it up until her B cells increase” (paraphrase
This got me curious as to when this occurs and I found a few studies suggesting that the 600mg every 6 mos dosing may not be right for everyone. People with more BSA reproduce their B cells quicker than those with less BSA. Suggesting that some may need infusions more frequently and some less frequently.
Another study identified similar variability but did not identify people characteristics that led to the variability. This researcher suggested that monthly measurements of cd19 (CD20) (surrogate for B cells) predicts when the next infusion is needed. Dose again when counts are > 20
Who here is having their B cells measured? How frequently? Is it determining your next infusion?
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erash
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Mine are not being measured, but I wish they were. I expect to be back to my normal BSA soon. I’m going to fast monthly to help keep the good times rolling 🕺
Prior to my last infusion, blood tests were done. One of them measured my cd19 (CD20) ~ normal range 3.0 - 20.0 %, and my number was 0.8 %. So, yes, I am being monitored, and perhaps I won't need to be infused every 6 months. This is the first time that this is being measured, and time will tell, and further tests, will determine if infusion scheduling needs to be revised.
Excellent article, food for thought, and thanks for bringing it to my attention. I will share with my doctor/neuro at my next visit.
Thanks for posting this erash ! I looked back over my labs for the last year and didn’t see anything monitoring B cells specifically. I had checked before and thought it was odd that my neuro just ordered the normal CBC. He is usually thorough so this doesn’t make sense to me that it doesn’t seem like this is being monitored by lab tests as well as MRI’s. My next appt is Nov. so I will bring it up then.
B cells or actually cd19 is not routinely monitored wit Ocrevus
But I’m thinking maybe it should be and I’m going to talk with my neuro (they don’t typically do and when I previously asked they shrugged, some do it)
Good article. I'm with Raingrrl on this. In looking over my lad results, it looks like my neuro just ordered the normal cbc tests and a few others but nothing that measured my cd19 (CD20). I too have my next neuro appt in Nov. Something else to talk to her about. Thank you for this post. I wish you continued success with your O treatments. ~terry
I had extensive blood tests before starting on Ocrevus. My understanding was this was more to rule out disease other than MS or any condition that would prevent me to get on Ocrevus.
Measures included: T-cells: CD3 & CD4, B-cells: CD19, Nk-cells: CD56. All was normal except CD7 & CD56 in absolute.
Tests included a bunch of other stuff (18 vials of blood).
I trust my MS doctor to do the right tests and right reading of them. He's already ordered a series of blood tests to be done prior to my next Ocrevus schedule (Dec/Jan). It looks like the same series has been ordered + Vitamin D and B12 because I'm on high-dose of D and non-meat diet might create a problem with B12.
Good article. It has never seemed right to me that pretty much everybody gets the same treatment dosage (pills or other- antibiotics, pains,....) regardless of body size.
Thank you -certainly sounds like u r getting comprehensive care. is ur neuro at a large health science center? Do you know what the importance is of the low cd56 or cd7? Reading about them, the seem important to cell function but I have no clue beyond that what the clinical implications are 🤷♀️
I don't know the differences between CD56 or CD7 or the others. Since I've been diagnosed, I've committed myself to learn more about all the various aspects of MS. Right now, I'm trying to learn about the various areas of the brains, their role, etc... so that I can read the MRI report and make sense of it in relation to my MS.
I want to learn more about our immune system but it seems to bring another level of complexity!
I'm followed at the MS center at UCSF. They have about 15 MS specialists working with patients and also doing research. While I've been assigned one MS doctors, I've already seen 3 others during evaluations for participation in various studies. Good to talk to different people who use different words or have a different perspective on the disease, yet practice the same approach so there's no confusion.
And good for you, researching the pathophysiology of MS and the brain. About 2 yrs ago I took a free Coursera neurology of the brain class. And I really expanded my understanding...but also just know how little I really know!
That is a course I would find interesting. The approach that I am intrigued with is the brain/body relationship. Happy brain/happy body. And the fact that our brains have redundant pathways, so relearning mechanical things should be do-able. I was going to say 'a no brainer' but I digress.
And you probably know more than me, so, thank you for sharing, and if you find/know any more, then continue to share!
Totally agree about mind/body connection and brain plasticity. The Coursera course was taught by a really dynamic professor from Duke Med School. I took that @ a yr ago.
So I asked an MS neuro colleague (not my neuro) and he said the research was interesting but it was too small of a sample size to base anything on. “Immature B cells take 6 mos to mature so the 6 mos infusion is appropriate”
🤷🏻♀️this doesn’t seem to account for individual variations but idk?
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