[rj9000]

I'm on Ocrelizumab for MS, which wipes out memory B Cells. EBV lives in these cells. Ironically I'm sitting here at the cancer center now getting my semiannual infusion. Anecdotally this drug has made my day-to-day much easier.

[doctor_eval]

I know someone on Ocrelizumab and we just had this same conversation.

[ungamedplayer]

Medicine is a fucking miracle. Respect for the whole supply chain.

[ramraj07]

Fun fact, Tysabri was withdrawn from the market when some cases of a rare cancer were reported. It was introduced back only after lobbying by patient groups who insisted they’d take the small risk for the amazing QOL improvement from this drug.

[doctor_eval]

Do you mean PML? That’s not a cancer, but a viral infection.

[doctor_eval]

Right? 10 or 15 years ago there were litterally no drugs that changed the course of MS. But then Tysabri came along and suddenly things changed for RRMS. And now Ocrelizumab seems to work for both RR and progressive MS. It IS some kind of miracle.

[ramraj07]

Absolutely, though the cost of antibody drugs (even biosimilars) leaves a lot to be desired. We have ways to go in that regard.

[Mezzie]

I wish I could be on Ocrelizumab, but it's hard to get it covered because (ironically) I've been lucky and had next to no disease progression in the 6 years since I was diagnosed (8 since triggering relapse). I'd like to keep it that way...

[rj9000]

I wish you many more years of good health. Many people with MS have a normal life with little to no disability.

[diogenes_of_ak]

I have to switch of Tysabri soon… how’s O?

[rj9000]

I've been living with MS for almost 15 years and still doing very well. However about three years ago everything went wrong and I got on O as soon as I could.

It's been amazing. Wish they had it a long time ago.

[idontwantthis]

Do you get re vaccinated for everything twice a year too or do you just accept the loss of immunity?

[badtake]

That’s not how anti-cd20 bcell depleters work. It kills mature bcells but leaves intact your adult mature plasma cells and thus your immunological memory. Your vaccinations and other immunities acquired prior to starting on bcell depleters remain intact, it’s producing future responses to new pathogens that is blunted.

[Broken_Hippo]

I'm not on O, but on another drug for MS (fingolimod), and can almost promise they aren't getting vaccinated twice a year.

First, some of the vaccines are simply dangerous as some are live vaccines. I cannot take some travel vaccines because of this: The risk of me simply catching the disease is too great. Same for their drug.

Second, there is some concern about the effectiveness of the vaccines. For example, the covid vaccine: I wound up with an extra booster because they weren't sure how well I was protected. And this can be the case with other vaccines: You might not get the same sort of protection out of it.

The outcome is generally that it isn't worth it to revaccinate folks. And for myself: It isn't that I'm unprotected completely. My immune system is just... hampered. I think the infusions cause more of an issue, but again, isn't worth the revaccination.

[rj9000]

I had to get the shingles vax just before I got on O due to reactivation risk despite being way too young.

I got COVID vaccine and while I had a symptomatic reaction, the results of my antibody tests were concerning. I had my antibodies checked at LabCorp (forget exactly which protein they checked for) and my antibody count was something like 20, while my wife (as the control) had around 12,000.

Some of the most recent research suggests even though the antibody levels are low, there is a good T Cell response still.

You don't lose any immunity you already had, but any potential future immunity is likely blunted.