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 Kathy,
In France, people treated with immunodepressants are recommended to get the A/H1N1 flu shot without additive…
Maurice

Hey Kathy,

If you've made the decision to get the vaccine, then I would call your GP's office and let them know. The last thing I would concern myself with is bothering them about something as important as this. I know how confusing this all is, but I'm sure you'll make the right choice for you. Maybe you could discuss it with your GP again. Good luck, stay well and take care.;)

Hugs,
Pat

Hey Maurice,

Thank you for the information concerning the additive. I've seen several health segments on TV discussing the fact the H1N1 vaccine had the additive, but not that there was one available without it. Very good to know.;)

Hugs,
Pat

Hi Kathy,
I am taking Imuran and on 30mg prednisone/day. I got the H1N1 shot on Nov. 2nd. I get the flu shot every year with no problems. I feel that getting the shot was the right decision for me. Take care ~ Melanie

Almost all vaccines have additives. The vaccine to avoid is the nasal spray delivery which has some live virus in it; the injected one has all dead virus.

Thanks guys! I think I just needed some reassurance. I rang my GP today and they apologised they hadn't been in touch. I have an appointment for next week.
Thanks again,
Kathy

I am taking CellCept. My neuro told me not to get either shot because of my suppressed immune system. I am a high school teacher. My GP told me to stay home if the flu breaks out. It broke out 3 weeks ago, but I have been going to school. We have one teacher who has been out 2 weeks with H1N1, we have had students miss a week at a time.

I am going on 3 weeks with a temp of 99.5 to 100.8, but I feel fine. Other than I am tired.

Hey Tbarney,

Have you been tested to see if you have the flu? I know that from the things that I have read, you gotta be careful if you're on immunosuppressants and run a temperature...It's best to see the doc. about it, just in case. I'm sure that you prolly have, though...

I remember a while back reading/hearing about the swine flu, and how docs. were saying that this flu is most dangerous to those who have 'strong' immune systems, like young adults...It's so confusing...the theory was that the immune system is what causes the damage in this type of flu...Then, a few weeks ago, they were saying that kids who get it have a mild flu...Now, about 3-kids in Canada have died from it...So it seems to be that those with weak immune systems, or those who are unacquanited with this flu (apparently, elderly people have antibodies from a previous flu outbreak where the virus was similar to this one so they're 'least' affected in terms of severity) are most at risk since they are dying from it...I'm just wondering why they said that those with strong immune systems were at risk, at least before...sigh

Hi Nicky,

My little daughter is fighting H1N1. I can tell you firsthand that this is a very serious thing for folks, like her, with underlying health issues. For heaven sakes, at the first sign of symptoms (this thing progresses like wildfire) rush to a clinic and get Tamiflu.

If you aren't ill yet, and can access vaccine, get the shot!!!!

I'm so angry that the chronically ill had to wait while professional hockey players, doctors' friends, rich hospital donors and healthy prisoners got vaccinated first.:mad: So much for our "everybody's equal" public healthcare system. :mad: I hope some heads roll when this is all over.

Keep Well

I am not going to get a flu vaccine.

Why? Mostly due to my past reactions to medications and injections. I don't want to deal with an almost guaranteed side effect from a vaccine.

Another reason, and I have to admit that I haven't looked up my facts on this one so I may be wrong, is that the vaccine contains thimerosal which isn't good for someone with an autoimmune disorder.

I think I had the flu in May and it was terrible with a high fever...and after about one week afterwards I started my MG symptoms. I think this fever was at least partially responsible for me getting MG.

Got Both
 

I received the seasonal shot about a month ago and H1N1 yesterday. The doc had told me to get H1N1 as soon as the vaccine was available but I told them after children and pregnant ladies. So they called yesterday and said there was enough vaccine for me to get mine.

Hey GI,

Nice to hear from you. Glad you got your shots and I'm sure you'll do fine. Hope you've been feeling well. Take care.;)

Hugs,
Pat

I'm wondering about the flu and autoimmune diseases such as the Pernicious Anemia i have ... can getting the flu be more severe or cause some damage for me more than a healthy person?

I was reading some info about this online and they mention my disease as well as MS among others as being cautious about getting flu shots as they can do some harm.

Would it be better to get the vaccination or not to? I'm not on any prescribed meds to supress my immune system so i should be good to go I guess.

I'm new to my illness with regards to preparing for the flu and stuff so any help would be appreciated. The official CDC website does not list my illness but it does list some Neuro disorders. The website lists this stuff ....

People at High Risk for Developing Flu-Related Complications
Children younger than 5, but especially children younger than 2 years old
Adults 65 years of age and older
Pregnant women
People who have:

Asthma
Neurological and neurodevelopmental conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].
Chronic lung disease (such as chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)
Blood disorders (such as sickle cell disease)
Endocrine disorders (such as diabetes mellitus)
Kidney disorders
Liver disorders
Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids)
People younger than 19 years of age who are receiving long-term aspirin therapy


Thanks!

Hey Megatrends,

Welcome to the group! I'm sorry but I'm not too familiar with Pernicious Anemia, but I believe a few people here have it and may post. Do you have MG as well? I'm glad you were able to find some good info online. Have you called your doctor to see what he/she thinks you should do? Thanks for posting all the great info. Hope to hear from you more.;)

Hugs,
Pat

Susan, I'm not getting either because of a terrible reaction I've had in the past. I'm just going to be very careful and hope for the best.;)

Hugs,
Pat

Hey Tbarny,

What a terrible position to be in. I have a friend who is a HS nurse and she can't have the shots either due to health issues. If you did get the flu would you be able to take Tamiflu? Not too much has been mentioned about that. I hope your fevers go away and you manage to stay flu free. Please keep us posted.;)

Hugs,
Pat

I snooped around the internet and found some answers for me.

I had used the search feature here and just went into this thread without realizing it was for MG sufferers. No I do not have MG but have read around here to see what it is.

I found that if I get the H1N1 flu my intestinal disease that is causing my Pernicious Anemia could get worse which hopefully it wouldn't. It has been dormant for me for about a year which is nice.

That leaves me with feeling like I have one disease instead of 2 to deal with.

I am not taking any immune system suppressants so i should be okay if I get struck with it besides the intestinal thing I just described. If my intestines were flared up i would be so this stuff is still good to know about for future reference.

Thanks for the helpful response .... even though i was lost and should have posted my response elsewhere.

Hey Megatrends,

Glad you found such good information and your Anemia has been doing well. You are welcome to come visit us anytime! Take care and stay well.;)

Hugs,
Pat

Hello everyone,
The whole family received seasonal flu shots in October.
As far as H1N1 vaccines go, I have been the only one to receive it so far.
My infusion nurse brought me one last week. I fit several of the high risk criteria, so after much deliberation, I agreed to get one.
The only available to the children right now is the nasal mist and I'm not sure if I am comfortable with it.
My husband totally refuses to get it and thinks Tamiflu will be enough to get through, should something arise.:rolleyes:

So far, I feel fine and felt no revving up of any MG symptoms. I am concerned about how much of an immune response I'd actually get since I am so immunosuppressed with Imuran and my inhaled steroids for asthma.:confused:

Hopefully, we will all make it through the season with a little illness as posssible.

Team Purell! :winky:

Jenna

Hey Jenna,

Glad you were able to get one. According to the news this morning, in the NY area at least, there are more vaccines available now of the H1N1. Hope we all make it through this season fluless or only a mild case of it. Stay well!;)

Hugs,
Pat

Finally got my H1N1 shot yesterday. They *&#(ed up the distribution here something awful and had to keep bumping back everybody with chronic health problems because they kept running out of it giving it to the (healthy) parents of school kids.

Hey Brian,

Glad you finally got yours. A lot of people I know have been complaining and are still waiting. Stay well;)

Hugs,
Pat

yeah, I'm too late for it to do any real good for this wave of the flu. Just have to hope my wife and daughter don't bring it home. But they're expecting two or three more waves of it through the winter....:eek:

My Neuro advises me NO FLU SHOTS - says he had a colleague with MG who got the flu shot and became paralyzed - that's enough to scare me away from the shots.

Hey Liakel,

Welcome to the group! Wow, that is scary! Hope to hear from you more. This is a great site. Take care.;)

Hugs,
Pat

Welcome to the group.

Sounds like you're getting a very very small part of a story there though. It is kind of like the kid in Toronto who died of H1N1... there is more than we're hearing here. I got the flu shot and the H1N1 shot, I'm still walking around ;)

I'm getting it!
 

Hello all! I've decided to get them both - better safe than sorry!

Love,
Erin:D

I wish I could get them too, but I'm not willing to take the chance of getting another severe reaction again. Unfortunately there are some people who aren't able to tolorate them. Stay well everyone.;)

You're absolutely right Pat, if you get a severe reaction or cannot tolerate the flu shot,you should not get it. But that's the case whether you have MG or not. These are separate issues and seem to be getting confused in the discussion. There is nothing about the flu shot that is bad for MG.

Vaccine with thimerasol
 

Be sure to get the vaccine without the mercury containing preservative thimerasol - mercury is not good for anyone, but is especially bad for people with immune disorders like MG. Research and you will see for yourself.

There is more mercury in a can of tuna than there is in the flu shot. The only flu shot to be avoided by people with immune disorders is the inhaled version which contains some live virus. The injected version contains only dead virus.

I am too upset by this thread, which is why I haven't responded much. I can't keep quiet anymore.

http://www.globalresearch.ca/index.p...t=va&aid=13925

http://www.ncbi.nlm.nih.gov/pubmed/10640454

Both mercury and squalene are in the H1N1 vaccine. If you are scientifically minded and read even a small bit of info on the Gulf War Syndrome or any other science articles on vaccines and these ingredients, you will be alarmed. Most biochemists, the ones NOT working for drug companies, would tell you the havoc this stuff wreaks on the mitochondria of each cell in the body (Kreb's cycle, etc.). The chemical reactions within the Kreb's cycle are fascinating and complicated and can be thrown off by certain drugs/ingredients. Even additives, like MSG, can interrupt that cycle.

These vaccines "super charge" your immune systems to produce antibodies to these viruses. If you are genetically predisposed to autoimmune diseases (like many Northern Europeans are, and people of other backgrounds), you have an increased risk of getting an autoimmune disease. Or another one.

Our immune systems can usually fend off a virus or bacteria. If they are "weakened or overreacting or thinking our bodies are the target," in the case of those with MG or other autoimmune diseases, then a vaccine MAY help. It is a double-edge sword, however, because it might get your immune system making even more MG antibodies as well.

The statistics from the CDC are interesting on the H1N1 flu. More children are getting the flu, however, more adults are dying from it. The reason? Parents bring their children in right away for the Tamiflu!!! Adults don't go to the doctor as quickly. They found that in Mexico, due to a lack of Tamiflu, more people were dying. So early intervention may be more important than the actual vaccine.

Deciding upon whether to have a vaccine or not is up to each of you and your doctor. It's a complicated issue. I am not going to tell anyone what they should or shouldn't do. Not my place.

Read up on the information. Talk about it. Decide for yourself.

Brian, I wouldn't eat tuna from a can either. I personally think it's dangerous to think the chemicals or metals in our food or vaccines or drugs are benign.

And if you think our government or drug companies or even the CDC (which is a government agency) wouldn't lie to you, think again.

Annie