Neuro appointment today - Ocrevus discussion

[Raingrrl]

Hi All,

Just wanted to share a little about the discussion I had with my neuro today at my appointment. I told him what my niece and her husband said to me about vaccines and Ocrevus. (Both of them are in medicine.) He confirmed what they told me...that timing of vaccinations after starting on Ocrevus will be critical to the vaccines having any protective affect. Too close to the time of an infusion and there won't be the necessary B cells for the vaccine to build up the proper immunity. This is such a catch 22!!

I told him I was disappointed that this wasn't made clear to me in time to get the new shingles vaccine but at least I got my pneumonia booster done. I can't delay the first Ocrevus infusion because of the weeks since my last Tysabri infusion.

I asked if there is an optimum time to get vaccinated and he said no sooner than 12 weeks following an Ocrevus infusion. Then he said they don't really know the optimum time at this point because it hasn't been studied. That's just great. It seems irresponsible not to have the answers for this because it adds risk for the people on the Ocrevus protocol despite the marketing hype that it has a "better safety profile".

And one more thing he told me is that it was good that I had the minor surgery procedure last week, because he would have veto'ed it as too much risk for infection this close to my infusion. I was so surprised by this that I couldn't think of what to say so didn't ask the questions I should have.

We also discussed the disagreement amongst MS neuros about prescribing DMT's for their older patients. He is thinking about starting his own database to capture data on his older patients like me.

[Morllyn]

Lots of good questions Raingrrl !

[ssdw1958]

Please don’t take this the wrong way but how old are you I am 58 going to be 59 in December. Did he say anything about the flu shot and I got an infusion for Osteoporosis I thought as long as the shots were not alive all was good. Too many questions not enough answers.

[dianekjs in reply to ssdw1958]

ssdw1958 , the flu vaccine isn't harmful while immunosuppressed because it's not a live vaccine, but it also won't work unless very carefully timed. My doctors told me that it probably wasn't worth getting while on B-cell depletion therapy but said if I really wanted to try to time it they'd arrange it. However, even then it's unlikely to be as effective. I tend to have bad reactions to vaccines anyway, so I don't mind skipping it. Keep in mind that the flu vaccine is only about 49% effective this year anyway, and some years it's considerably less than that. The year I caught the worst case of flu imaginable I had dutifully gotten the flu shot, while there've been many years I didn't get the shot and was just fine. I'm not saying you shouldn't get it, just that it might not make a big difference, particularly if you follow basic precautions during flu season.

[Sukie427 in reply to dianekjs]

I've had the same experience. Every time I get a flu shot I get the flu, but when I don't get it I don't get the flu. My husband got a flu shot, as he always does, and got the flu and gave it to me.

[jimeka]

Raingrrl i don't think Ocrevus as been around enough to know all the variables. A lot of research as yet to be done. Good on you for asking what you did and Thankyou for letting us know. Blessings Jimeka 🦋 🌈

[Raingrrl in reply to jimeka]

Hi jimeka ! I realize Ocrevus hasn’t been around long enough to know those variables. BUT the issue of vaccines while on B cell depletion therapy isn’t new. There should have been research into this while the trials were going on or the issue could have been researched on Rituxan that has the same action.

I’m glad Ocrevus seems to be helping people without the same PML risk as drugs like Tysabri. But the vaccine issue raises the question about other risks IMO.

[erash in reply to Raingrrl]

I agree Raingrrl

That is a drug class effect that they should have made u aware of

[bxrmom in reply to erash]

I totally agree with you erash and Raingrrl

[Sggmcswain]

Was told by Nero to get any vaccines, I started Ocrevus right out, no problems. Was told to talk with her reguarding any surgery. (sorry about spelling,medicine makes me loopy)

[erash]

Raingrrl I'm sure that was a bit disconcerting. Hope the O goes well for you! Keep us updated and I'm very interested in what happens with the data he collects on older clients.

[Sukie427]

Is there a new shingles vaccine on the market that is okay for Ms patients to take? Because my neuro keeps telling me that I can I take a shingles vaccine because it is a live vaccine. I am seeing my neuro on Monday and will ask him about that.

[Raingrrl in reply to Sukie427]

Hi Sukie427 ...there is a new shingle vaccine that is not live and is given in two doses. It’s called shingrix.

[Sukie427]

Thanks, Raingrrl . Will ask my neurologist tomorrow