Immunity info for those on Ocrevus

[Raingrrl]

This article popped up for me today. multiplesclerosisnewstoday.... 🤬

I posted awhile back that Ocrevus patients need to discuss immunity and vaccines with their neurologists because vaccines need to be carefully timed to maximize effectiveness and many doctors don’t bring this up. There is now further info regarding Ocrevus, vaccinations and immunity. It’s not good news especially in the midst of a pandemic and with flu season coming up. I was not happy to read this and will be sending the link to my neuro so we can discuss it.

[jimeka]

Good article Raingrrl thank you for sharing. How are you doing? 😊

[Raingrrl in reply to jimeka]

Hi jimeka ! I’m doing good. I hope you are too.

I was counting my blessings this morning. Considering the global pandemic, I’m lucky not to have to be completely isolated despite living alone. I have great neighbors and friends who are equally vulnerable but we can visit outside with social distancing. My friends and family stay in touch thanks to modern technology. My condo is half a duplex situated on a golf course. I don’t golf but it is a way to be surrounded by nature without having to maintain it. I love the 100+ year old oak trees that are nearby my back door. I love seeing the critters wander by...even the coyotes! I’m really blessed that after 30+ years with the MS beast, I’m still standing!

[jimeka in reply to Raingrrl]

Your home sounds idealistic, what a blessing. I live in a small village in the countryside but I am guilty of not always appreciating it and taking it for granted. I hope Ocrevus works for you. 🤗

[erash]

So, were you vaccinated for shingles after starting Ocrevus (I was) and would you have your timers checked and consider re-vaccination?

My thought is not to check and keep my fingers crossed 🤞 no shingles.

But it’s also 1 of the reasons I put my Ocrevus on hold in preparation for the Covid vaccine. I’d like a vaccine to be maximally effective.

[Raingrrl in reply to erash]

Hi erash ! I didn’t know about the vaccination issue with Ocrevus in time to get Shingrex. I’m still mad about it. I was planning to get the first dose 6 weeks prior to my last infusion but forgot. And now after reading this article, I’m not sure if it will be effective.

Earlier in the year, I learned from a family member that is a doctor that as we age, you can lose some immunity. As a result of that conversation, my sister, brother and brother-in-law had their MMR immunity checked. They each were missing immunity to one of the 3. So...I decided to have my checked too and was surprised that I’m missing immunity to the Measles. I had the original MMR vaccines PLUS a booster when my daughter was young. Weirdly my PCP said not to get another booster.

I’m going to talk with my neuro about this. I was planning to get the flu vaccine as usual but now I’m not sure it will be effective at all based in the article.

[erash in reply to Raingrrl]

They have been discussing boosters for MMR for just that reason.

[Raingrrl in reply to erash]

Apparently the MMR booster doesn’t last indefinitely either. Mine was 30 years ago.

[erash in reply to Raingrrl]

but I believe that's not a recommended vaccine for people with MS as it is a live attenuated vaccine

[Raingrrl in reply to erash]

Didn’t know that. Thanks!

[Jesmcd2 CommunityAmbassador]

My question is, if I had the chicken pox as a kid, does it mean I could get it again? And what about all the other vaccines we had? Measles, mumps rubella? OMG!😐🤗💕🦈

[rjoneslaw in reply to Jesmcd2]

I know u can get chicken pox again

[Raingrrl in reply to rjoneslaw]

That’s very rare according to John’s Hopkins, the Mayo Clinic and NIH. You are much more likely to get shingles if the same virus that hangs around in your nervous system gets activated. That’s why people are being encouraged to get the shingles vaccine.

[Raingrrl in reply to Jesmcd2]

Hi Jesmcd2 ! Read my reply to Erash. 🙂 We can lose some immunity as we age partially because our immune system loses some if it’s effectiveness. B cells are critical to the process of building immunity. Ocrevus, Rituxan and some other drugs do their work by killing off specific B cells. That’s why it’s important to time vaccines to try to maximize the effectiveness. Now after reading the article, I’m wondering whether or not vaccines can create any immunity while I’m on Ocrevus. I was hoping that an effective Covid-19 vaccine would be my get out of jail free card in the future but now I’m much less confident of that. Aargh!

[ahrogers in reply to Jesmcd2]

It is rare but I did get it twice. I had a pretty good case of it around age 7. When my son was around 5 he got it and he had had the vaccination previously. I thought I had nothing to worry about because I had it as a kid...wrong. I had pox head to toe but luckily didn't feel very I'll. I had heard people who get it as an adult are sicker. I was worried it put me at higher risk for shingles but a doctor told me that isn't the case. I plan to get the shingles vaccine at end of November since my next Ocrevus is in January.

I work as a nurse and around 13 years ago they had everyone get boosters to TDAP and MMR if they were born before a certain year. That must have been when they discovered the vaccines don't last forever.

As others mentioned you can get a blood test to check if you still have immunity

[rjoneslaw]

I have never gotten immunity and vaccine shots

[Raingrrl in reply to rjoneslaw]

That’s obviously a personal choice so even if you are on Ocrevus, the article doesn’t pertain to you. I believe in vaccines as part of taking care of my overall health and as a means to try and avoid illnesses that can cause an MS flare or even a pseudo-exacerbation. Raising my core temperature causes me trouble especially when it is from a fever.

[kdali]

Ocrevus did not change mine at all, it’s been the same number for 20 years. It’s a little lower than the norm, but getting a vaccination was not recommended. Perhaps I will check it again after being on it for a longer duration.

Ty for sharing!

[Raingrrl]

Good to know kdali ! Maybe it’s not a consistent thing?? The way I read the article it seems that the patient had multiple health conditions and that there is a suspicion that those may have something to do with the loss of immunity. It’s still worrisome to me since I’m ‘older’ and also have Hashimoto’s though it hasn’t destroyed my thyroid yet.

[kdali in reply to Raingrrl]

I remember being in nursing school and one of my mates had to get injections again because his first set didn’t take. I believe it was the MMR. Maybe some people are more likely to lose immunity or less likely to have a strong (or any, in his case) immunity once infected or injected. I would be doubly concerned having the wonky thyroid too!

I had to redo so many labs when I took travel assignments to certain areas, and I never thought about it, except that it was a nuisance because I could prove I had the shots 🤣 I was always immune 🙌 I hope to stay that way, but this is important for us to discuss periodically because no one else seems to care about it. Yet.

[Elizt3]

My example is related to the Hep B vaccine. Before I started on Ocrevus in January 2019, my neurologist wanted me to have the three series Hep B vaccine (in addition to a pneumonia vaccine and shingles vaccine). Because of timing, I was only able to have two of the Hep B injections before I started Ocrevus. My neurologist wanted me to have my vaccines completed about two months before starting Ocrevus. I then had to have the third in the Hep B series about two months after starting Ocrevus. About six months later, my neurologist had my Hep B antibodies measured. It looked like I had never had the vaccination. He was puzzled. He said since my risk of contracting Hep B is very low, he didn’t recommend I repeat the vaccine.

Now I’m wondering how much benefit I’ll receive from the flu vaccine or a future Covid vaccine.

[Goldilockssearching]

My 2 cents is to talk with a pharmacist. They are much more knowledgeable when it comes to ANY drug as that is their specialty.

[carolek572 CommunityAmbassador]

Sounds interesting, Raingrrl Please keep us posted as to what your neurologist has to say.

[MoparMom]

Where does this website gather and verify its information? I thought I read somewhere earlier this year (when I was first diagnosed) to be careful about this site & what it publishes. Any thoughts?

[Raingrrl in reply to MoparMom]

Hi MoparMom ...it’s good to be careful about what’s posted. There is a lot of wacky stuff out there. No one verifies individual posts here that I’m aware of. Hopefully someone will correct me if I’m wrong. Personally, I’m a science and fact-based person. I thoroughly research and double check things all the time. I would hate to post something that caused someone harm or to be lead astray

As for the link I posted to start this discussion, it is an article based on an actual study and published in a well respected journal. (The study, “Varicella Zoster immunity loss in multiple sclerosis patient treated with ocrelizumab,” was published in the journal Clinical Immunology.)

The credentials of the person that fact checked the information in the linked to publication: Patricia Silva, PhD

Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.

[Lilith08 in reply to Raingrrl]

Well said. Yes, lots of wacky or vague stuff to sift through on the web. Like you I try to be careful about sources.

[MoparMom]

Thanks for the info...just to clarify....the site I meant for being cautious on was the multiplesclerosisnews site not this site.