Thanks brian..... so if I understand that mumble jumble (LOL) because I'm on immuran I shouldn't bother? Sometimes this double talk gets me... all I want is a yes or no! LOL

If your MG is not flaring and there are no other reasons not to (egg allergy etc.) then YES get the shot.

My final two cents is, "Your own neuro knows YOU" I won't be getting the flu shot, not only because of what my neuro says, but because of my own experience with it.
I don't want to take the chance. Please everyone, listen to your body.
This is why Myasthenia is the Snowflake disease. We all react so differently. And it also depends probably on how bad one has Mg. My breathing tanks way too easily for me to take a chance. Okay, I'm pretty terrorified to try again.
Becareful out there.
Love Lizzie

So I talked to my neuro's associate yesterday, and he said that I should absolutely not have the H1N1 shot. He said that they have seen patients who have gotten the flu shot go into crisis. He said that even the dead vaccines are dangerous for people with MG.

*knocks on wood* that I don't get the swine flu

That disagrees with the information provided to me by Dr. Nicolle. Absolutely follow your wishes and if your neuro's associate is telling you this feel free to do so.

I am going with what my GP and Dr. Nicolle's info tells me.

Brian.

I asked my Neuro, and he advised me to have it. I thought about it lots, and decided I really don't want to go through a bad flu, so had the vaccine.
I'm with Lizzie, we each know our one body, and with that as well as advice from our Neuro/GP should decide(not that it makes it any easier.)

I had the flu shot in one arm and the pneumonia shot in the other arm on the same day and had no problems. I am not going to get the HINI vaccine, though - too nervous about it. My regular doctor wants me to have it all - he is worried because of the breathing problems I've been having this year. I agree with everyone else, listen to your doctor and your body and make a decision accordingly.

I've been reading all the posts, but am out of town again at my daughter's in Richmond, VA, and not strong enough to be posting - but am keeping up and thinking and praying for all of you!

Agghh! I'm so torn.

First of all - sorry I haven't posted in awhile - I've still been reading, just felt I had nothing to say (rare - I know)!

Back to my Swine Flu Quandry -

I'm on pred and azathioprine so I'm immunosuppressed. My MG seems quite stable at the moment and I'm in the process of tapering my pred (right now at 30 mg every second day - nothing on the alternate days). I work in a high school (12 - 18 year olds) specifically kids with disabilities (one of the biggest high risk groups). We've already had about 12 confirmed cases of Swine flu in the school and lots of suspected cases. Some of you may remember I had a terrible flu in July which I thought MAY have been Swine Flu but it was never tested or confirmed and I was given no treatment for the flu - just told to take it easy. My neuro (if you can call him that) has not been in touch for OVER a year now so I have no advice from him.

So, what do you all suggest I do? I've had flu shots previous years and never had a problem. But maybe I'm ok if I already had the flu? Just looking for some friendly advice... hope you are all well! I think i'm leaning towards getting the shot, but still unsure. The other piece of the puzzle is that the GPs office has asked people not to contact them but wait to be contacted, but i know people who have fewer risk factors than me who have had the shot already. I don't want to annoy the doctors by reminding them I still exist, but i do!

Stay healthy!
~Kathy

Hi Brian, this is why the one expert said "The only this predictable about Myasthenia Gravis, is it's unpredictability." (two years ago, at the MG conference"
Not often, but some Neuro's will okay the flu shot, but many don't. I really have come to believe that it all depends on their personal experiences with their patients.
My Neuro is a Neuro Muscular Specialist, Has many many MG patients, and is a director of his cities MDA. But even among MG specialists, there will be verying opinions.
It's one of the reasons it's so important to know your own body.
How long have you've had MG? And how bad?
Much Love,and prayers
Lizzie

I've had it for two years now. How bad depends on who you ask I couldn't eat very well and lost 140lbs due to MG, but my limbs are not severely effected.

My current neuro is a generalist, that's why I went to see a MG specialist last week. He's an associate professor of neurology at the University of Western Ontario. He researches MG, teaches other neurologists and carries a practice through the University (teaching hospital). He was the medical editor for You, Me and Myasthenia Gravis ( http://youmeandmg.com/ ) Me, I'm going to believe whatever the man has to say about MG.

That said, You and your neuro know you best. If your neuro says you shouldn't have it, then you shouldn't have it. If you feel your MG is not very well controlled (i.e. it doesn't take much at all to push you over the edge to a week on the couch), you shouldn't have it. For the others who are wondering, I passed along the information provided to me by Dr. Nicolle.