Flu shots
 

Who is getting the flu shot and the N1H1 when it becomes available? I still have some concerns.

I would appreciate any comments or concerns you may have. Thanks.

Pat

Got pneumonia and flu shots, getting H1N1 asap.

Thanks Brian. Have you always gotten the regular flu shot without any problems?

Thanks Lizzie. I too had a terrible reaction years ago from the regular flu shot and haven't had one since. The swine vaccine frightens me even more, but so does the thought of getting the flu. My doctors all have mixed reviews which only confuses more.:confused:

Hugs,
Pat

nope. I've only had it one other time and it wasn't the right mix that year. I was sick as a dog who got into the neighbor's trash ;) So far so good this year though.

Thanks Brian. When I was recently in hospital, they asked me if I wanted the flu shot and the pneumonia shot. I wish I had taken the pneumonia shot since that's what people get so sick from with the flu and is so dangerous. Maybe I can still get one at my pcp's office.

I have been debating about this.... I'm actually going to call tomorrow to the "big cheese" doctor I go to who teaches etc. on MG... to see what he recommends.

Lizzy, that's what happened to me quite a few years back, so I never had another one. My cousin is an RN and works for a major medical center in NY. He only got the regular flur shot and was home on a machine for his breathing for a week and couldn't get out of bed. He's so relieved the manditory H1N1 has been called off. He was so afraid to have that one too! It was on the news that something like 44 percent of parents in this country are not letting their school age children get vaccinated with the H1N1 vaccine. I thing I am going to become a hermet for the next few months. It reallly is a confusing topic.

Thanks everyone for you responses...I really appreciate your input and help.;)

Hugs,
Pat

My neurologist told me to not get the flu shot...I haven't talked to her about the swine flu shot, but I'm assuming I'm not supposed to get that one either...

Kinda relieved...I'm pretty sure that I would get really sick from it, but then I still worry about getting the actual swine flu...:S

I understand just how you feel Nicky. It can be scary.:eek:

Flu shots
 

I am not getting either one. My Neuro said if I wanted to get the seasonal he was ok with that. My Int. Med Dr told me yesterday she wanted me to get both but the H1N1 has to be a vaccine not the nasal spray. I told her I am terrified of them and plan to be extra careful this year. The scariest part is that once they are injected they are there and you can't reverse it. My sister was DXed with H1N1 about a month ago. She is perfectly healthy and is on her 6th round of meds. It has attacked her lungs terribly. She is getting better but her Dr. told her that it is spread through the eyes, ears and mouth. He suggested using a sinus rinse daily to get any bacteria out of the sinuses before they set in. He also said drinking a hot drink at night will help kill bacteria in the mouth. He suggested she wear glasses or sunglasses whenever possible to keep anything from getting in through the eyes. He said all of these are in addition to the basics, staying out of overpopulated areas as much as possible, washing your hands often and using hand sanitizer in between. I also have a friend going through radiation for breast cancer and she told me the same thing about the hot drinks and sinus rinse. I plan to try it. It certainly can't hurt. I am a firm believer in the sinus rinses. I used to get sinus infections yearly and haven't had one since I started using mine.
Kendra

Thanks Kendra, The sinus rinse and a hot drink at night sounds like a good idea.

I've pretty much decided not to get any flu shot. We older folks are supposed to have some immunity left over from a flu strin in the 60's (perhaps the Hong Kong Flu? I got that one really bad - - and have never had flu since) And anybody who was born 1946 or earlier is supposed to have even better immunity.

I have a neuro appointment next week. I won't bring it up - but will be curious to see if they do!!

Sue

Hey Kendra,

I totally agree about the sinus rinsing...I have one called, hydrasense, and it works pretty well...

One thing that I have been doing for years, before hearing about the nasal rinses, and I don't know if this is unhealthy or not, is snorting water up my nose then blowing it out...I've always had trouble clearing my nostrils...

Last year I got the seasonal flu shot without any problem.
This year I wish I had think it over...
While I was on my Pred taper scheme (from 5 mg pd to 4), I had the usual "bad" week following the change but it lasted longer this time, after 2 weeks, I was still feeling that general weakness. I saw my neuro which advised me to go back quickly to 5 mg, otherwise I may risk some other problems, which I did after a couple of days.
Unfortunately before the situation went back to "normal", I had the pneumonia shot, also advised by my neuro...Three days later, I felt much better (probably the Pred action?). That lasted 2 days, then the situation quickly deteriorated up to the early MG symptoms, jaw muscle weakness, chewing problems...
Now, about one month after the shot, I'm still waiting for my previous condition with the help of 10 mg Pred and an additionnal 60 mg Mestinon.
Needless to say that I completely forgot the flu(s) shot, also recommended by my neuro...
Maurice.

As per my Neuro.. NO shots for me. I don't do well with them. But he told me even he isn't going to take it. Didn't say why, he is just against them.

I get the flu shot every year and I have for years. I am going to get the H1N1 shot next week and the flu shot shortly after. My neuro felt that since I just went into crisis from a sore throat in Sept. that it would be advisable. I have three small kids and germs are everywhere! It's a personal choice, you have to do what feels right for you. :)

Rezmommy,
It is highly recommended to have shots at least 3 weeks apart...
Maurice.

Thanks for the info Maurice. :)

There was a doctor on one of the morning news talk shows, that said you can get one in one arm and one in the other.:eek: I don't think so! Pat

Brian, did you happen to ask Dr. Nicolle what his thoughts are on this? They are sending me a letter about it, but wondered if you asked him when you saw him. Thx!

I didn't because I already had made up my mind to get it as soon as possible. My wife is a teacher and my daughter goes to middle school; they'll be bringing it home for sure before this is all over. I'd rather not get it personally :). But the reading material he gave me says this regarding immunizations / vaccinations:

-- General questions in Myasthenia Gravis; Wilma Koopman RN(EC), NP, and M. W. Nicolle MD, FRCPC, D.Phil

Of course, if you have an egg allergy like I do, the point is moot! ;)

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.

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:eek:

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!

I think the problem of H1N1 flu shot or not is partially based on the fact that they are 2 different kinds of H1N1 flu shots: one with an "additive" (I'm not sure whether it's the right word) and one without...
The objective of the additive is to boost the effect of the vaccine and this type of vaccine is not recommended for people like MG'ers (most likely under immunosuppressants) unfortunately, it is far more frequent than the other (without additive).
It is thus highly advisable for those of us who want to get the H1N1 flu shot to know exactly the type of vaccine you are getting, otherwise, skip it!
Maurice.

Hi Brian
 

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.

H1N1 and Flu Vaccine
 

Hi Guys!

I had both shots, the H1N1 and the Flu vaccine on the 29th, I have already been vaccinated for the pneumonia one in 2007. My doctor said it was safe for me and I made sure I did not get the nasal spray H1N1 since that is the LIVE virus. I haven't had any problems yet and it has been 3 days since.

A word of caution, the H1N1 does burn when it is injected.

I am so used to needles to where I only make a face SOMETIMES, but I did say OUCH when the nurse inserted it.

I hope everyone is doing well,

Stephanie

Brian,

You lost 140 lbs? That's a crazy amount of weight! Over what time period- two years?

I think that I lost about 20 lbs, but my weight is back up again, thank God...I only have minor problems with swallowing, though...Eating causes me problems because of a weak tongue, mainly...

Did they ever suggest giving you a feeding tube?

Yeah, this flu shot is throwing me for a loop...I suspect that I might be able to handle it since I get infections like it's no one's business already on account of the prednisone, and I don't go into crisis from those, although my speech goes up in flames...

I think that I will ask my GP, but he seems to always agree with everything my neuro. says...

I lost 140 over 10 months last year (between Jan - Oct). I'm back up about 10-20 now though :)

Thank you everyone again for all your responses. You guys are the best!;)

Big Hugs,
Pat