Today was my latest Ocrevus infusion. So far it has been keeping my condition stable so that’s the good news. Because of things I’ve read and discussions I’ve had with my neuro, I knew that it’s action has an affect on immunity and that you have to carefully time vaccines. It wasn’t until Covid 19 came along that I’ve been looking into this a lot more and questioning my immunity levels. I last saw my neuro in May and we discussed the question about Covid vaccines ability to produce immunity in immunosuppressed people. Consequently, she ordered blood tests to look at the cells in my immune system.
I did the test yesterday so that it would show the maximum number of CD 20 expressing B-cells before Ocrevus starts killing them off again . The results are already back and aren’t pretty. First I have to say that I’m surprised that the blood sample was analyzed by the Mayo Clinic and not locally here in Washington State . It has a a note at the bottom that the test is not approved by the FDA yet. What it shows is that my body has not repopulated any of the CD20 expressing B cells. At least not in the blood stream where this test can measure them. I’ve read before, that like everything else with MS, people handle Ocrevus differently . Some may completely repopulate those cells, others may be like me and still others may be in between somewhere. It’s a spectrum.
I’m waiting to hear more from my neuro. These cells also exist in places where the test can’t measure them like lymph glands and bone marrow. I do seem to still have T cells but don’t know if that gives me any Covid immunity.
This post is just to inform others that are on these types of DMT’s and to encourage conversations with your medical providers . YMMV. This issue doesn’t apply to you unless you are on a DMT like Ocrevus. As for me, I’m going to continue to mask up and be extra cautious. I can’t count on any immunity right now. (I did forward these results onto a family member that is a doctor to get her take. She agrees that it’s very concerning that those B cells didn’t repopulate at all.)
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Raingrrl
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Thanks, good read. I've been seeing more headlines finally addressing this and hopefully making the general public more aware that the risks remain for those of us who are immunocompromised even after vaccination.
J&J vaccine has a higher than comfortable risk of brain blood clots in studies and the real world. That was part of the reason it was paused for a minute here in the US shortly after it was released. Mostly in women too. I am already at higher than average risk for blood clots as it is having had multiple pulmonary emboli in 2013 and survived. To risk something like that when I can retake Moderna or Pfizer is almost ludicrous in my mind. Neither of those have shown an increased risk to anyone of blood clots to the brain or anywhere else
I had the 1st moderna vaccine, then got covid and had an antibody infusion, so I can't get the 2nd vaccine until August. I have two blood disorders that put me at higher risk of clots so I would need convincing to use J&J.
Well that's true, it's possible they were offered a choice. Most locations do not have a choice a of more than 2 if they have a choice at all. But, the J&J one was paused for a brief period due to the blood clot issue and J&J tried to downplay it by saying that the risk was less than when women take birth control pills. However they did not say that the clots in risk were of the kind that form in the BRAIN, not in the leg or elsewhere in the body, as the risk is with BC pills. The risk with BC has become much lower since they lowered the estrogen in them and balanced out the hormones but they are still not educating women to the risk and what to look out for. J&J is trying to do the same thing with their vaccine. this risk is for women, again, and not for men.. Women have become second class citizens in the medical community. No one was informed about this. Anyone here get the J&J vaccine? Were you told about the risk of blood clots to your brain? was it thoroughly explained to you?
Thanks for this erash . It really captures where I’m at. The world around me has started to move on but I can’t go with them. Many experts are predicting that Covid will become endemic. I never thought I would have to choose between keeping my M.S. controlled vs living a full life. 😕
terrifying to me. I have been telling my doctor that I don't think my immune system responded to the vaccination and he keeps telling me he read something somewhere that said a lot of MS patients mount an "adequate" defense with both shots of the vaccine. I am still like um.. that doesn't quell my worries doc, just sayin'
Sounds subjective. Adequate means what?? What I’ve read from credible sources say otherwise for specific MS patient populations . There are trials going on to gather the data that will answer this immunity question.
If your doctor isn’t an MS neuro or an immunologist, I would take their “I read somewhere” comment with a grain of salt. There is a huge difference in the immunity potential between MS’ers on immunosuppressant DMT’s and MS’ers on other less powerful DMT’s. That’s why I was careful to put a comment in my post that my info doesn’t pertain to MS’ers that aren’t on Ocrevus, Rituxan or similar.
understood. when i got the vaccine, both shots i was on Mayzent. 2-1/2 weeks after taking the second shot i had labs done and they showed my immune system was in the crapper.. B-cells were very low, absolute lymphocytes were in the 400 range and overall white counts were in the 4K range. I had no reaction to either shot. Not even a sore spot on my arm where they gave the shot. Nothing. I susp0ect my immune system did not respond to the vaccine at all. My doctor at this point won't hear me out on this. I have a new PCP appt on the 2nd of July with a new provider. I plan to talk to them about this and see what they have to say.. I also have an upcoming appt with the nurse practioner in the neuro's ofc, who is usually much more sane about these things than the actual doctor is
This is true, and she wasn’t selling me any confidence with her response, but the truth is the lab for checking the titer is “not reliable yet”, and apparently my MD is not reliable yet either.
Raingrrl Thanks for an informative post and sharing your lab results. I just had another ocrevus infusion last week. Sadly, my mask will not be coming off anytime soon either.
Good information ℹ️ I am still wearing my mask 😷 and went to Walmart and only seen 3-4 others with masks on. Being cautious still with ms and cancer ♋️ don’t want to take any chance. Yes I have had both shots also been couple months now. Read US has 51 percent vaccination 💉 done, Idaho were I am has 60 percent with 70 percent over 60. So still a lot not vaccinated. Have a great day 👍🙏😉🤗 Ken 🐾🐾🐾🐾
Was the lab draw at 6mo post infusion? Ty for sharing this, I’d love to see more labs and more labs being done after the 5yr mark. I don’t trust innate immunity to do much for me, which is currently failing against just kiddo germs.
Yes. The lab draw was the day before my infusion so at the 6 month mark from the previous one. I expected the CD20 B cell count to be low but not zero. My age could be playing a role too. I’m not a spring chicken. 😄
I posted 2 months ago on this thread about this exact thing - granted I may not have said that exactly 🤗
Anyway I was going to post pictures but cannot. My CD20 panel is always less than the detectable amount and they are ok with that due to O’s half life and that even if my body was making new b-cells I may not have made enough.
I also was back in neuro office the other week as I e had chronic leg tingles daily - told I can ignore it so it’s ok for now….
Anyway, we talked vaccine efficacy again, and there are presently studies being conducted and my clinic was looking for O patients that haven’t been vaccinated to help with research. Basically, Ocrevus reduces efficacy fir the vaccine but to what level no idea. Immunocompromised individuals even not in O could need a additional shot if looking at other vaccine efficacy. Dr reiterated they are still getting answers and to still be cautious.
So I’m living life in a mask for the foreseeable future cause I also have kiddos that are human petridishes. 😂
My neuro always runs a blood sample before allowing me to schedule an Ocrevus infusion as my Bcells (and Tcells) don't repopulate at 6 months but more like 8 and slowly.
We timed the Covid vaccine for when Bcells where back a bit so that I could build immunity to the virus. We're trying 1/2 dose of Ocrevus right now rather than full dose.
That said, I have not had the flu or any infection whatsoever since on Ocrevus (3 years).
They're doing more research on the vaccine and MS (I'm part of one). So hopefully they'll have better answers for us but I would still take reasonable protection to limit exposure to COVID and other virus.
This was the first time my neuro ordered a blood panel like this. The report shows I have some T cells I just don’t have any serum CD20 expressing B cells. Let us know when the research study you are part of will be published.
I read in Barts MS blog that there might be published results from studies like this in a couple of months. I hope so. In the meantime, I’m continuing to act like I’m not vaccinated. Too risky for me to do otherwise.
Given my experience, I'm surprised that blood tests are not mandatory prior to each Ocrevus infusion. If I were on the standard protocol, my immune system would be quite destroyed.
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