Flu Shot

Is it safe to have a flu shot if you suspect you may have an auto immune disease? I have not been diagnosed yet, but symptoms seem like that is what I may have. I asked my GP about this, and she said no, that I shouldn't have the shot, but I'm going to Stanford Medical in a couple weeks to hopefully get some answers about my symptoms and I will be in a plane for 5 hours as well as exposed to all those people in the airports where there are lots of germs. I would hate to get sick and then Stanford could refuse to do any procedures or tests on me if I'm sick. I'm coming over from a long way just to see if I can get a diagnosis. We are spending alot of money to make this trip, so want to know if anyone out there has had a flu shot having a possible auto immune disease that they haven't really been dianosed with yet?

Thanks, Terri

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I have Myasthenia Gravis and I was also diagnosed with Sarcoidosis ( but I've been questioning that since I was diagnosed 2 years ago ). Back in April, I got VERY sick. Diagnosis: H1N1. I was told that I should have gotten the flu vaccine. And if my fever didn't break within 24 hours I was going to be hospitalized. Luckily it broke, so I didn't end up spending time in the hospital. But I was told that people with Auto Immune diseases should get vaccinated, as it can be really devastating if we don't. Now, I'm sure opinions vary greatly on this topic. But that's just what I was told. I have not gotten vaccinated as of yet.

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Hey Catney,
My office was giving free flu shots a couple of weeks ago and I contacted my neruo as I also have MG and he said that there should not be a problem with me getting the flu shot. I got it, so far no problems. Good luck to you, Annette

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I have Sjogren's, i was just DX about 3 month's ago. My Doctor said it was a good idea that i get the Flu Shot. With Autoimune Disorders your body can't fight sickness like most people. So getting the Flu shot was highly suggested!!

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Thanks everyone for your imput. I still am undecided because my doctor said no, and I started getting sick with most of my symptoms last year 2 weeks after getting the flu shot. I'm wondering if it might have triggered my problems somehow? Guess I will call the people at Stanford and see what they say.

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Thanks Kiki!

I am going to the Rheumatologist today to hopefully get the appropriate blood tests to help decide if I do or do not have Sarc too. So, I will talk to him about me needing the flu vaccine too, I wonder if they give it there or if I need to see my medical doctor.... I will ask! =)

All I know is I was so incredibly ill from H1N1 and having auto immunes... I DO NOT want to go there again! =)

@ Hawaiigal... Is this just your primary care physician??? What do they think you may have? What are your symptoms? I have found that most primary care doctors may know of auto immunes but don't really know anything about them, persay. I would get a second opinion because if you do have an auto immune disease, your immune system isn't working right and it won't help fight off the flu very well.

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Hi i have auto immune hepatitis dx a year ago. my specialist almost demand i get a flu shot, if i would get the flu it would be much more devastating on me than the risk of the flu shot. just make sure you have no allergies to eggs,latex,or thimersol. also that you have no seizure disorders or history of guillain-barres syndrome or other seizure disorders.

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I have an autoimmune disease ....Wegener's Granulomatosis. The rheum at the Cleveland Clinic has told me two years in a row to get the flu shot. My regular rheum told me to and my primary care doctor gave me the high powered dose because of my condition.

I had a very ,very minor flare of my WG disease a couple days after but I don't know if it was related and I'm extremely sensitive to meds.

So , I would get it again because with autoimmune ,you can get the flu so easily ....especially on a plane.

However, please ask your doctors at Stanford . That's the best advice anyone could give you. And good luck.

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Yes, this is my primary care doc. She has given me alot of ANA tests and they are always negative. Also, I went to a rheumatologist at UCLA back in March and he ran several tests for a host of autoimmune diseases including lupus, rheumatoid, and sjogrens. Nothing came up positive, so nothing was done. I started having cardiac symptoms (angina) in July and was put in the hospital where all the cardiac tests came up negative too, including an angiogram. Then my cardio doc here in Hilo put me on calcium channel blockers thinking I may have coronary spasms or micro vessel disease because those won't show up on most standard cardiac tests. The calcium channel blockers have helped some where I have not had bad angina for a while, BUT I'm still having my other symptoms. I'm going to Stanford not only to see if I do indeed have spasms and micro vessel disease but also to see about my other problems.

Here are my symptoms.: Nausea, stomach cramping, fatigue, muscle, joint aches and weakness, burning, red and sore eyes, weight loss, hair loss, and bladder infection.

Plus I have had numerous tests on my digestive system to see if I had an ulcer, gallstones, cancer, celiac disease, intestinal blockage and stool tests----nothing was found. My thyroid was also tested with negative results. So the only thing I can think of is an auto immune disease, even though all those tests also came up negative, I have learned in all my research that it can take years for the tests to come up positive, and also my eyes are really inflamed and red, so that is a clue for me. How long did it take you to be diagnosed with auto immune problems?

The main reason why I'm afraid to get the shot is because I am not taking anything except for my angina, and I'm afraid the flu shot will make my symptoms even worse. I will call Stanford today and see what they say.

Thanks for your advice. Terri

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My docs say get the flu shot. It is a dead virus. If you have any synptoms of the flu do not get the shot. Your arm may be sore and you may have a low grade temp for a day or so, but this is associated with the med and the body's reaction to something different. I had the flu and pneumonia vaccine on the same day. Will get the flu shot again this year. Wear a mask on the plane and in the airport. Use portable hand sanatizers, wash hands frequently, take several pairs of disposable gloves to use to flush toilets and don't worry about what other people think about your mask. It's your health.

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Oh gosh I am sorry for the place you are in. Hope you come here and keep us up to date, vent, what ever you need as this can be a process that is harder than one can bare.

I noticed change in my eyes about 10-12 years before I was diagnosed. Maybe more if you count the strange and severe eye fatigue (as it was called). And at the end in the 2 years before I was diagnosed the docs just got mean. I was told I needed to go the psych dept athe major university hospital I now am treated at. That doc was an infectious disease expert.

It took a very progressive and brilliant internist to say 'oh it sounds like you have sicca!' This after I told her how much water I had to drink everyday to feel anywhere near comfortable or just not miserable. The other doc had been in her hosp and had sent me to psych to the dept that diagnoses diseases manimfesting from mental illness/trauma. I never wnet to those appoitments cause I knew it was real.

I have to stop talking aobut it as it was so so horrible on me. My family didnt even back me. What kind of disease other than diabetes makes a person drink alot of water.... I was tested for diabetes over and over. Also I was WEAK!!!! I literally had to drop out of school and could make it from one end of the groc store to the other.

One thing that was found after the Sjogrens was that I was severly vitamin D deficeint. Taking care of that alone made me so much better I got back to work part time. It reduced the amount of infections I like like magic. If you have not been tested get it done nomatter if you need to buy th test yourself. The info on this is at the great site Vitamin D Council. It is my vit D Bible.


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Everyday, I called the pharmacist where they are giving the flu shots today and was told there is one live virus in the shot. The other virus is dead. I think they are combining the N1H1 with the regular flu shot this year.

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Thanks for your support Poppy51. Wow, can't believe it took 12 years for you to be diagnosed from the time your eyes acted up!! Sure hope that doesn't happen to me, because I'm already 60 years old and can't even imagine going without treatment until I'm 70!! It will probably kill me at that age!!

I too have been to doctors that have already suggested it is in my head! Just hope the Stanford docs will listen. What were your other symptoms other than feeling weak and drinking alot of water? I do take vitamin D3 too--- about 2,000 mgs. How much are you taking?

My primary tested my vitamiin D level and it was 30. She said it should be at least 60. How long does it take to feel better on vitamin D? Been taking it for about 10 days now and don't feel much better yet. Hope it helps. What else do you take for your sjogrens? Did you get lots of bladder infections with sjogrens? Sorry I'm asking so many questions, but I just want to see if your case is similar to mine. Just hope I'm diagnosed soon! Can't live like this much longer. Thanks for your help, are you getting the flu shot? Terri

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If you can tolerate more than 2000iu take it. My daughter didnt see the best results till she was up to 5000iu which is taken by many people including medical professionals. I just put up a message for someone who is stunned that she is taking vit D as directed and seeing little change. I lived that very thing so I told her everyone is different. I was diagnosed with the def in 2006 and it took tons of experimentation to figure out dietary wasnt working for me (food plus supplements). I had been all the right things AND walking for 3 months outside and was at such low levels. Ultimately I had to go to a tan salon and tan to get it up into the upper 30s then 40s and higher. It takes me 3 times a week of tanning.

I dont have urinary infec. The dryness has left me with damage to my left eye surface so the right combination like pollen in the air and me being away from my humidified air can leave me in excruciating pain in my left eye now. I have to use Nite Systane on that eye esp if that left eye gets into that painful place or to even protect it from getting that bad. I put vaseline with a Qtip up into my nose to keep it from getting so sore and painful from the dry that it causes headaches and even can bleed.

I dont have sore joints like some do. But if I dont hydrate well and get away from my humidifiers for too long I get a different kind of headache and have more aches and pains in general. Of course there is the blurred vision from dry eye. The intolerance to smells from the dry nasal tissues. At this point Even the fragrance thing in the hallway outside can burn my nose. I have to be careful about any cleaning chemicals and generally try to find natural things or organic type cleaning products that are fragrance free. All my soaps and even my dryer sheet is frangrance free/low chemical in part to avoid the strong smells that would burn and hurt my dry dry nose.

Systane eye drops are my savior. Strangely enough after being diagnosed with probable myasthenia gravis and getting on a drug called mestinon alot of my symptoms got better. For normal poeple it can cause so much saliva and tears and runny nose they will stopo taking it or take less. for me it made me near normal for all those reasons!! Once in a while I have heard of docs letting non MG patients take little doses of it to get this great affect.

Eeyes worse tonight so gotta go. Only thing I didnt touch on it how it affects my breathing. I can come back and get into that if you wish.


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Yes, tell me how it affects your breathing. So far, I don't have any problem with my nose being dry---could be because I live in Hawaii where it is more humid---we have alot more moisture in our air plus it rains at least a few times a week. However, my symptoms just started last year, so maybe this is just getting started and I will have the dry nose and/or breathing problem later. Sure hope I'm wrong!! Don't know for sure if I even have this, but would not be surprised if it is some kind of auto immune disease.

My eyes aren't as bad tonight for once. They seem to go through stages where they are bad and other times not so bad. That's terrible you have to go through so much with your eye. I'm on restasis and lots of moisturizing drops. I also have glaucoma and must take drops for that also. So, do you think I should up my Vitamin D to 4 or 5000 IU? I'll give it a couple more weeks and if I don't feel any better, I will up my dosage. Hope you have a good day. Thanks for your imput. Hugs, Terri

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Hi Hawaiigal,

NO, NO, NO do not get the flu shot. I had Guillain-Barre Syndrome (GBS), although I didn't get it from the flu shot which is one way to get it. It would be devistating for you. Remember this rule of thumb, whenever your immune system is low do not get any kind of foreign injections in you especially the flu shot. It is a germ from chicken eggs that will attack your digested sytem and if your immune system is off you have your organs where it starts from, your stomach, liver, kidneys and heart and you don't want to take any chances with that. I was in a coma for 4 months and in the hospital for a year with GBS. My immune system was down when I got this and this became the most horrible illness I ever got in my life. Listen to your doctor, he is right!!! God bless you and pray to Him for guidance on this. Take Care.

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Thank you for that information. What a terrible time you have had with GBS! Wonder how you got it, if not from the flu shot?

I have had a flu shot every year since I turned 50 (I'm now 60), without any problem at all, but now that I have been sick for a year and am not sure what I have (maybe auto immune), I am questioning if I should have it or not. I wouldn't have the shot for sure if I was not going to Stanford Medical, which is a 5 hour plane trip for me and will be exposed to all those people on the plane and airports. Then after the docs see me at Stanford and hopefully will have a more clear picture of what my illness is, we will be going down to LA to see my sister who is slowly dying in the hospital from multiple myeloma. I would be much grieved if I couldn't see her because I got sick from the flu and the hospital I'm sure would not allow me to visit. This is probably the last time I'll see her, as I live far away from her. So that is why I'm having so much of a problem making up my mind about the shot. My immune system is surely low because of all my symptoms I have had for a year, plus now I'm on antibiotics for a bladder infection that happened out of the blue,(haven't had one in 10 years) which tells me my immune system is not working right for sure. I will pray to God for the right answer and hope he will keep me from getting the flu so I can see my sister one last time. I know one day I will see her again as well as my Mom and Grand parents, and they will all be as good as new, but I really do need to see her now until that wonderful day happens. Thanks for your advice, God bless you and glad to hear you are recovering. Terri

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