Oreavus questions: I'm slated to start... - My MSAA Community

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Oreavus questions

smw163 profile image
8 Replies

I'm slated to start Ocreavus, but am worried about immune supression. M.S. causes a "misfiring" autoimmune system, but without it, dormant viruses such as herpies simplex 6, from chicken pox, are not kept in check. There is a shingles vaccine, but what are the ramifications? What are your thoughts?

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smw163
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Royjr profile image
Royjr

Those are all good questions. Me personally will not take a vaccine with live viruses (ie, flu or chicken pox), but that’s just me.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

That's because your chicken Royjr 😁

Hi smw163 and welcome to the nut house.😊

1st off, We are NOT Dr's and only can share advice. So PLEASE always ask your healthcareTeam. 😊

I'm not on Ocrevus, but my PCP insisted on the flu shot. And gave a scrip for the pneumonia vaccine. 🙈

Fancy1959 Allen5280 are both on it

Jes🌠

Royjr profile image
Royjr in reply to Jesmcd2

You’re right 😀about me being chicken, that’s why I always start by saying “me personally “ because I know everyone is different. I guess I’m over cautious to a fault sometimes, but I’m trying to be better.

Iona60 profile image
Iona60

Some neurologist s recommend a flu, pneumonia, and shingles vaccine before starting O. My shingles titer was high enough, so I was able to skip it. The oncologist that administered the O for me said that in his experience, those that got many colds and viruses before O continued to do so after. I've been around a sick husband and daughter over the last month and haven't caught anything. Best of luck.

Raingrrl profile image
Raingrrl

Hi @smw163! You are wise to question the immunosuppresent affect of Ocrevus and what it means for vaccines. There is not alot of clear information out there on the affect. MS people should never get the live vaccines so the info I have is based on killed vaccines only. You will also want to discuss this with your own medical team.

I had my first dose of Ocrevus in Dec. I had a flu shot and pneumonia vaccine prior to it because I was told by medical professionals in my family, and confirmed with my neuro, that vaccines aren't effective without B cells to activate. Ocrevus kills off specific B cells. My neuro confirmed that going forward that I will have to time vaccines carefully to get the most effect but he can't tell me when the optimal timing is. I'm not happy about this at all.

Allen5280 profile image
Allen5280

smw163 , I have been on Ocrevus since May of 2017. It is my understanding that when on Ocrevus there should be no live vaccinations of any kind. Most flu shots are not live vaccines but must ask beforhand to be certain for there are a few that are. I think the nasal spray ones are. Anyhow, yes that eliminates the shingles vaccine. I have dealt with some skin infections, jock itch, folliculitis and seems not to necessarily cause some of them but makes it tougher to get rid of. Same with an upper and lower respotory infection, ( viral bronchitis) it was going around and I caught it, it is the sickest I ever remember being. I did not need additional medical care though. I wsse borde feline a few days but loaded up on my cold ease and vitamin C. Compared to all the other treatment I have been on it is by far the best. Some additional weakness for 4 to 6 weeks following my infusions. Still, by far the easier of the bunch. I am fairly happy (in comparison to others) with ocrevus so as long as I don't go into a state of decline again I will probably stick with it until anotheer option presents itself. If you like I have been posting updates from time to time. If you click on my profile and then posts I have tried keeping everyone up to speed on how it a has been going for me.

Hope it helps,

Allen

Allen5280 profile image
Allen5280

Oh and I forgot to mention that I did have a flu shot this year 2 weeks prior to my first full dose ( second round 6month) infusion. It is my understanding that ocrevus only wipes out the b-cell in the ammune system. So the b cells have to recoup prior to the vaccination. Must be 2 weeks prior to the infusion so there is some skepticism on if the flu shot will even work. However our community was plagued with the flu this season causing some local school closures. I did not get the flu. Whew, not out of the woods yet but take every precaution to avoid exposure to it.

Raingrrl profile image
Raingrrl in reply to Allen5280

That's my understanding too Allen5280 . My medical family members said 2 weeks prior to an infusion but my neuro wouldn't confirm. Just said 'we don't know'. Since other biologics also deplete B cells, I don't get why this isn't known and published. Maybe I just haven't found it yet.

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