Worrisome info about vaccines: This is... - My MSAA Community

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Worrisome info about vaccines

erash profile image
27 Replies

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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erash profile image
erash
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27 Replies
Morllyn profile image
Morllyn

Hummm.🤔

craftygranny profile image
craftygranny in reply to Morllyn

How do you get the emolgies in here?

erash profile image
erash

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

Birdymom3 profile image
Birdymom3 in reply to erash

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.

WAshingtongirl profile image
WAshingtongirl

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.

erash profile image
erash in reply to WAshingtongirl

WAshingtongirl 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 😬

WAshingtongirl profile image
WAshingtongirl in reply to erash

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! 🤔

erash profile image
erash in reply to WAshingtongirl

WAshingtongirl

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🤕

WAshingtongirl profile image
WAshingtongirl in reply to erash

You lost me at Tutu 😂

Birdymom3 profile image
Birdymom3 in reply to WAshingtongirl

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

Birdymom3 profile image
Birdymom3 in reply to WAshingtongirl

I'm with you on that one.

Raingrrl profile image
Raingrrl

WAshingtongirl 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...

WAshingtongirl profile image
WAshingtongirl in reply to Raingrrl

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. 😉

Raingrrl profile image
Raingrrl in reply to WAshingtongirl

WAshingtongirl 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.

erash profile image
erash in reply to Raingrrl

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

kdali profile image
kdali

Interesting!

jimeka profile image
jimeka

@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 🦋 🌈

erash profile image
erash in reply to jimeka

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...

erash profile image
erash in reply to erash

Oops I mean ON not NO

jimeka profile image
jimeka in reply to erash

erash thank you x

goatgal profile image
goatgal

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.

erash profile image
erash in reply to goatgal

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

Juleigh21 profile image
Juleigh21

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.

Raingrrl profile image
Raingrrl in reply to Juleigh21

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.

craftygranny profile image
craftygranny

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.

erash profile image
erash in reply to craftygranny

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

Iona60 profile image
Iona60

erash WAshingtongirl 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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