My MSAA Community

Worrisome info about vaccines

This is specific to NEuromyelitis Optica but the overlap with MS and the odd fact that immunosuppressive DMTs are protective makes me want to "watch this space"

Plus if you are on an immunosuppressive DMT, I wonder how effective your immune response to a vaccine is? Is there reduced efficacy? medpagetoday.com/MeetingCov...

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Hummm.🤔

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How do you get the emolgies in here?

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so the first thing I found was related to inflammatory bowel disease, but as I suspected, vaccines are less effective when on immune suppressants.

So you have a chicken and egg problem :o

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Check with your doctor , my Dr told me that with MS our bodies fight them because they are invading in their in your body and our bodies think they have to fight it.

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Interesting. My doc believes a whooping cough vaccine booster a few years ago triggered an MS relapse. I wasn't on an immunosuppressant then, but I'm on two now. I'm afraid to even get a flu vaccine.

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Tutu per this study, immunosuppressant drugs will reduce relapses associated with vaccines...but I understand your concern!

It makes sense that vaccines, which are intended to stimulate an immune response could cause a relapse. This is the first I've read of a non-live vaccine doing this. Although it's not about MS specifically.

Then again, getting the virus could also cause a relapse 😬

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It's just hard to imagine how being on immunosuppressants would be okay. It just seems to be the opposite. I've been told I'm at high risk of catching anything (due to the immunosuppressants). Another UTI this week set off the dreaded immune response. With my experience, I'm not willing to take that chance right now. Maybe my docs could convince me otherwise. Thanks for the food for thought! 🤔

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Tutu

It actually makes sense biologically

If vaccines stim the immune system resulting in relapses and the immunosuppressing DMT suppresses the immune system, then a vaccine with an immunosuppressant on board will not stim the immune system as much and there will be fewer relapses

It just seems odd clinically.

Do you take an immunosuppressant to decrease vaccine related relapse, decreasing the benefit of the vaccine BUT if you are on an immunosuppressant you can't fight an infection and are apt to get more symptoms and relapses so you better take the vaccine 😜

Hence the chicken and the egg problem 🐣

Too much for my MS brain🤕

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You lost me at Tutu 😂

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Make sure your drinking a lot of water and juices, and go to the bathroom when you need to , it generally helps.

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I'm with you on that one.

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Tutu and erash... This discussion is perfectly timed for me. I had sent a message to my neuro today asking if I should look into getting the new shingles vaccine, which is non-live, before I start Ocrveus. I had the same thoughts about doing this that you guys have stated here.

I reminded him that I'm on Tysabri which is also an immunosuppresant but that we allow my immune system to ramp up a little by how we have been setting the cadence of infusions. (8 weeks in between instead of 4 because of how high my JCV index is). My neuro said he didn't see why I shouldn't get it since it is a killed vaccine and I should talk to my PCP about getting it. That was it....not exactly the thought out response I was hoping for.

So...I'm still trying to figure out if its beneficial to do this or not. Sigh...

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Gee, I would think your neuro would be the one to answer that. Let us know what your PCP says. Then you can get the vaccine and we'll wait to see how you do before we make our decision. 😉

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Tutu I'll let you know what my PCP says. She is generally very thorough about everything. Almost too thorough sometimes. I was just surprised at my neuro's answer. I kind of wonder if he even thought about it at all or just gave the nurse a top of his head sort of answer. The nurses are the ones that look at the messages so you never reach the neuro directly.

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Raingrrl

Likely better to get a killed vaccine than the disease: virus

But I agree

Not so simple

Then again Msaa and other ms orgs. likely would also suggest vaccinations

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Interesting!

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@erash, I have just read the report. Could you discern the bit that concerns me. I am not on any immune suppressant medication, but with having this bout of optic neuritis. I am due to have my flu jab next week, have I read it right that it can inflame it more? Thank you, blessings Jimeka 🦋 🌈

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jimeka I thought about you when I read this research

NMO isn't exactly like NO (I think) but it's certainly similar

This is only one small study and hopefully the neuros are following the latest from ECRIMS and can advise you/us...

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Oops I mean ON not NO

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erash thank you x

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erash Thank you, as always, for your explanations of complex issues. I have had no reactions to either of the two pneumonia vaccines, the shingles vaccine, or tetanus BUT last year, I had a two day reaction (vertigo and frightening balance problems) to the high dose flu vaccine for seniors. The high dose version contains more of the chemicals that stimulate an immune response. This year, back with the regular dose, no reaction at all. This incident certainly made me more aware of how my immune system is directly related to my MS...and made me more cautious, washing my hands more frequently, etc.

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And the interesting thing is that the high-dose flu vaccine while it increases immune response doesn't decrease getting the flu. At least according to the most recent research I've read

goatgal

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I asked my neuro earlier this month about both the flu vaccine and the shingle vaccine. He doesn't want me to get either. I'm on Tysabri. He doesn't want any of his MS patients getting these vaccines b/c of the possibility of relapse. I've always gotten the flu shot. I feel very torn right now. Of course, at the moment I have a nasty cold, so I couldn't get the shot anyway.

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Interesting Juleigh21. Both my neuro and PCP (an internal medicine doctor) have always made sure that I get the flu vaccine. I've not had any problems with it while on Copaxone or Tysabri.

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I was told by my MS nurse that we with MS should not take live vaccine shots because they put the immune system into overdrive and causes the body to attack itself. The flu shots are ok but the vaccines that are live viruses are bad for us.

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we are not talking about live vaccines causing this though craftygranny ?

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erash Tutu Raingrrl jimeka goatgal Interesting! They checked my shingles titer before I went on Gilenya last summer. It was relatively high as I had shingles the year before. If it was low, the protocol was to get the shingles vaccine, which was live virus at that time. I quizically asked the neuro about that logic. He said that it was the lesser of 2 evils and way better than getting shingles while on Gilenya.

I'm just connecting that I had a relapse within 30 days of getting a pnemonia vaccine last year. I had thought that it was due to stress. hmmmm.

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