So I just attended a Genetech webinar on Ocrevus. The neurologist answered my questions:
1. When can you get a vaccine once on Ocrevus? Vaccines (not live or live attenuated) can be given any time after an infusion. Midway may be a good time but there is no rule.
2. Hair loss as a side effect? Could be multi-factorial to include a side effect of the steroids. But not a known Ocrevus side effect.
that was nice your questions were answered.
Thank you erash 🦋
Do you think that it can depend on the vaccine? My PCP said that per the drug rep for the pnemonia vaccine, 3 weeks prior to the next infusion was the prime time.
I am not sure they know when safest and when vaccines will be most effective...I think they are assuming Ocrevus will be at a nadir close to the next infusion but I also heard that ocrevus lasts beyond the 6 mos.
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Maybe they assume we can mount some if not full response to the vaccine, hence some protection...
Are they measuring ur B cells?
Why no vaccines 6 weeks pre infusion but the pneumonia vaccine 3 weeks before is ok? Did they give a rationale?
I bet they r basing on experiences with chemo?
That makes more sense to me Iona60 and not just for the pneumonia vaccine.
Or is 3 weeks before to short of a window before the pneumonia vaccine can mount enuf of a response before O infusion knocks out B cells again? Why initial recs 6 weeks but pneumonia vaccine 3 weeks??? I’m going to call Genetech today🧐
I’m excited to hear their response. The flu shot is available now and I need to get one, but I wasn’t sure if it was B cell mediated and I needed to wait until O clears my system or what. My MD didn’t know yesterday, so I really appreciate your detective work!
I appreciate you sharing what you learned. So many questions! It’s still fairly early in the Ocrevus experience, so for those of us who are thinking about it, experiences and information are really helpful!
Thanks for the info erash . The info about vaccines makes no sense in light of other info from studies like in the link below. It would seem the optimum time to get a vaccine is closer to when you need the next infusion not just any old time. That is when you would have the most B cells.
multiplesclerosisnewstoday....
That’s what I would have thought
Unfortunately, that link isn’t opening for me
You would hope a neurologist speaking for Genetech would have accurate info or state the best time isn’t known
Apologies if I’m spreading inaccurate info 🙃
So now the link opened and I’m not sure it identifies best timing as it comps vaccines 12 weeks after Ocrevus vs 1 day after NO Ocrevus and supports the idea I mentioned to @iona60 : some vaccine effect is better than none
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I am so sorry if the above info is inaccurate or misleading. It certainly seems controversial. I will call Genentech today and see what their pharmacists say and then share that. 🙄
Thank you!
erash thanks so much for the info. I am going to a PEP on O. a week from Friday and will try to remember to ask about vaccines there also.
Thanks! What’s a PEP?
erash a PEP is a Patient Educational Program. It is usually at a restaurant, with a nice meal provided by the drug co. They bring in a neurologist to speak about their drug as it relates to MS, but s/he will usually answer ANY questions during the Q&A. And they often bring in a speaker that has been on their product for awhile to give a patient's point of view. Even if it is a med. I am not really interested in I always learn something, and it is a nice "date" for my husband and me!
This is all so confusing. I hope that we can get some answers. We all need flu shots. Thanks erash
Yes - Flu shot. I will call my Ocrevus navigator today and see what they suggest.
Ocrevus/Hair Loss
Ocrevus side effect??
OCrevus and hair loss
Ocrevus and gynecological side effects?
