[SoftTalker]

Hi All,

Just wondering if anyone has had a reaction to this year's flu shot.

Had flu shot - shot hurt like it has NEVER hurt (upper arm muscle).

My physical and verbal reaction shocked me and the Nurse Practitioner who gave it to me.

A couple of hours later, I was resting (routine afternoon rest/sometimes quick nap) and realized I was really feeling awful - extra weak - breathing affected slightly, and was having much throat clearing. (This symptom was one of initial MG symptoms, after the initial eye droop and has been fairly well controlled for years).

Then, I realized that my left arm had become extremely weak and I could not pick it up - I was sitting in recliner. And I had pain in arm = shooting pain down the arm.

Called pharmacy where I got the shot. NP called me back, said flu shot should not do that, that my speech was slurred and to call 911. Possible stroke symptoms she casually mentioned to me.

Well I knew I was very ill. Have gone to ER and subsequently hospitalized for MG crisis 2 times over the years --- but this was different.

Called 911 - my vitals were fine, just a little bit of high BP and higher heart rate. However, my droopy left eye (almost closed), and dropping mouth and body weakness (extra weak left arm) - DID seem to highly impress the EMT's.

Folks: We MG'ers can look like stroke victims with our infamous eye droop.


Fast forward with a quick ride to ER.

Triaged - and eventually given IV solumedrol. My regular neuro (of course) was not on call - but he certainly heard from me the next day.

LOL - he can hide - but he can't get away.

Obviously, I was not happy and he was not very happy either about this situation.

Anyway, I was finally discharged 7 hours later.

Eye droop had lifted, gagging (choking on saliva) stopped, general weakness better, breathing better, all good except for left arm where the FLU SHOT was given.

Left arm weakness is now better - after a few days home. But it still is not the same as my right arm.

Neuro has amped the NOT SO BELOVED prednisone up to 30 mg a day (had been slowly reducing and was down to 10 mg a day).

Neuro was/is quite puzzled about this. Says perhaps NP hit a really bad area in that muscle with the shot and the extreme muscle pain (trust me, it was a 12 on a scale of 10), and could have triggered this episode.

MG can be exacerbated by many things. Who knows? He doesn't. I doubt that anyone will ever REALLY know why I reacted so strongly.

He said to ask my Internal Med doc to send report to CDC, as they track adverse reactions to flu shots, etc.

I have had a set-back but am getting better.

This post is not made to scare people with MG - about flu shots. If your doc says to get one - get one.

Now, if my doc wants me to get one next year, I have to admit, that I am going to have to think twice ..... or maybe three times about playing that not so little gambling game.

Note that I have had flu shots many, many times since DX'd. No reaction, hardly any pain except for the initial stick.

But I am just wondering if anyone else has had a reaction to the flu shot?

The "literature" out there (online) about MG and flu shots generally advocates flu shots for those with MG. Including the MGFA.

I have been having a rough time lately with MG - hotter and more humid than usual here in CA and greater than usual personal stress, and reduction of daily prednisone dosage. Perhaps something in this new strain of flu shot was enough to push me over?


And now for the good news:

At least I did not go into myasthenia crisis.

Just a huge exacerbation.

Thanks for listening.

p.s. Wow, sorry for long post. It's the PREDNISONE.

[4-eyes]

That sounds bad. Sorry that happened. Did anyone explain to you that the steroids you took also likely cancelled any effects from the shot? You may want to ask you PCP for a script for Tamiflu to keep at home "just in case."

Hope you're feeling better soon.

[SoftTalker]

Originally Posted by 4-eyes

That sounds bad. Sorry that happened. Did anyone explain to you that the steroids you took also likely cancelled any effects from the shot? You may want to ask you PCP for a script for Tamiflu to keep at home "just in case."

Hope you're feeling better soon.

Hi, just clarifying, are you saying that the effectiveness of the flu shot may have been lost because of the high steroid treatment I received?

Hmmmmm....no one mentioned that to me.
ER = probably too busy
Neuro = probably didn't know this
Internal Med doc = haven't seen him yet

I will ask Internal Med (my PCP) doc this and ask for for script for Tamiflu.

Thanx

xoxoxo

[mrsD]

Most doctors do not know anything about vaccines, really.

This year's flu vaccine is different...has more strains, and may have stronger adjuvants. It is the adjuvants (additives) that create the reactions.

Here is the CDC guideline:
http://www.cdc.gov/vaccines/pubs/pinkbook/genrec.html

Certain drugs may cause immunosuppression. For instance, persons receiving cancer treatment with alkylating agents or antimetabolites, or radiation therapy should not be given live vaccines. Live vaccines can be given after chemotherapy has been discontinued for at least 3 months. Persons receiving large doses of corticosteroids should not receive live vaccines. For example, this would include persons receiving 20 milligrams or more of prednisone daily or 2 or more milligrams of prednisone per kilogram of body weight per day for 14 days or longer. See Varicella chapter for more information about administration of zoster vaccine to immunosuppressed persons.

and:
http://www.immunize.org/askexperts/experts_general.asp

Inactivated vaccines and toxoids can be administered to all immunocompromised patients in usual doses and schedules, although the response to these vaccines may be suboptimal.

Usually the use of steroids after a vaccine may inactivate proper immune response, so that the vaccine may be negated.

I'd get the exact ingredients from your vaccine, and who made it, including the lot #. Every year vaccines get recalled for one reason or another (errors, contamination, and even ineffectiveness). If this new vaccine has problems, you need to
have details at hand for your own liability claims.

Many vaccines don't even put ingredients now in their inserts that come with the vaccine. But if you have the name and company you can usually find them online somewhere.

Don't assume vaccines are "safe". We have had several injuries on PN forum. Currently we have a poster damaged by the adult whooping cough booster. And we had a poster from Canada injured by H1N1 vaccine.
This is my vaccine thread:
http://neurotalk.psychcentral.com/thread163906.html
Statute of limitations for vaccine injury claims is typically 2 yrs. However, that is only for the gov't bureau. The vaccine industry got an exemption from the Supreme Court to disallow liability suits from vaccine injuries. That says quite a bit IMO.

[schavarria]

Last year, about a month after I had the fall flu shot, I had a dark pink, flat, asymmetrical spot appear on the inside of my calf. Very painful to touch, walk, etc. It faded and within 2 weeks another area cropped up down by my ankle, same leg. Went to ER because of my MG and thinking it could be blood clots. Not clots. They couldn't figure it out, sent me to rheumotology. Finding no other explanation, they thought it was erythema nodosa from the flu shot, possibly masked by the prednisone I'm on. The second area faded within a couple of weeks, and haven't had a problem since. I've decided not to get the flu shot this year.

[Stellatum]

I will be getting the flu shot this year, though I don't think it's a no-brainer, by any means.

The reason I have decided to get the shot is that I had my first noticeable symptoms of MG after taking care of five kids with H1N1 for three weeks. I started to get sick myself, and then overcame the illness, and then immediately had my first MG symptoms.

My best guess is that it was fighting off the infection that sent my immune system into hyperdrive. Like I say, it's only a guess. And even if I'm right, I have no way of knowing if my reaction was typical. So, working with all these unknowns, all I can do is speculate that the flu is more of a threat to me personally than the shot is--especially because I'm on Imuran and Prednisone. But I will definitely get the killed virus (shot) and not the weakened one (nasal spray).

Abby

[southblues]

I took a flu shot last Friday. I had absolutely no problems with it.

People who are on immunosuppressants should probably not use any modified life vaccine like the one that is in the nasal spray flu vaccines.

[wbdolphin]

On October 24, 2011 I got my first flu shot. On October 26, 2011, 48 hours after the shot, my ptosis started. I had not had any other MG symptoms up to that point. The flu shot was not from a live vaccine. Coincidence or not, I won't be getting another flu shot, ever. I'm assuming MG was already present and would have surfaced at some point, but I believe the flu shot activated it. As I'm not on medications and am symptom free after my thymectomy, my Dr is leaving it up to me.

[bny806]

Goodness, so sorry to hear your reaction!!! I debate should I or shouldn't I get the vaccine each year.... Last year, I hesitated, but I did.. and did have an exacerbation of my symptoms.... this year, I'm planning on getting it again I think... I have a really really hard time when I get sick..


I have two small kids who get sick often due to preschool, and then I work around sick people.... sooo I will be getting exposed to it... I just debate.. is the flu itself or the vaccine worse... and then even worse case - do I have a reaction to the flu vaccine, and it still doesnt' protect me!! ahh (I hear getting IVIG can make it less effective too - anyone else heard that?) stinkin germs!

[southblues]

I get the flu vaccine every year. I am exposed to the actual flu so much that I think the benefit outweighs the risk. It is scary and sad to hear about reactions though. I had my shot last Friday and I am fine.