i dont make anti bs to the pneumonia vac...i am sure you dont either one reason we are on ig replacement...whooping cough is a booster shot to the one you got as a kid...they have recently realized a booster is needed not sure of the protocal yet....i had whooping cough in 2010 so i wont get one...i doubt i would make antibs anyway i havent to any vac that they have tested...
this yr is the first yr i WILL NOT get a flu shot dr schroeder (immune doc) told me not too..i dont make antibs to much so all it was doing was making my immune system (or others that i get through ig replecement) fight harder...so i wont get one this yr...i had the h1n1 twice the yr it was so bad once in oct then again in feb.....it was explained to me that we should be getting protection from the ig replacement...except for the yearly flu since the plasma that we are getting hasnt had the seasonal flu shot...
he did say EVERYONE in my house needs to get the flu shot so i can avoid getting it throught them....
and of course when the flu is at peak form i am a homebody.....
just my thoughts and what i have been told...i have had every doc i have asked tells me something different...but since i think dr schroeder really knows the immune system i feel comfortable listening to him....
i would ask your doc what he thinks you should do....

I have had the same experience as pconville with not making antibodies to the pneumonia vaccination, and was also told by my immune specialist that this means that vaccinations would not be helpful for me. I'm not sure if this is how it is for everyone with CVID, but it was one of the tests my doctor ran to confirm my diagnosis. I agree that you should ask your doctor about what is best. But also, if your doctor hasn't already tested your response to vaccinations, it would probably be helpful to ask that they do so that you will know whether or not they actually work for you.

I was about to ask a similar question, for my home healthcare nurse is pushing me to get a flu shot, but the doctor I had when I first started ivig said when on ivig one should not get the flu shot. I have not asked my current doctor yet, but am curious as to if others get flu shots and if not is it because you don't make the antibodies or because you were told not to when on ivig. Last year was the first year I didn't get the flu shot and was the healthiest flu season I think I have ever had (was also first flu season on ivig, so very likely the reason)

All of my doctors insist I get the flu shot and as a matter of fact just paid Rite Aid to administer as my HMO didn't have it yet. From what I understand the flu virus is encased differently then the pneumonia, a different protein or something way above my head lol. Theoretically we will be getting some protection from our donors ivig/scig from 2010 the flu shot this year, however, is called "2009" something or other mixture. Its based on what the experts anticipate the outbreak will be this year. It won't hurt you (NEVER get a live vaccine of anything) and could only give you ADDED protection. I haven't gotten the flu in years THANK God.

Kelli you are absolutely right, the pneumonia shot is specifically dependent on antigen presentation by immunoglobulins to create immunity. Flu shots are not, is a viral antigen shot and we should be able to repond to it. That being said, I did not have any flu titres despite having been vaccinated for the flu every year for the past 15 years.... Mind boggling...

i talked with dr mannon at the IDF meeting sat.

he had talked about t cells and b cells and it sounded like with cvid you have either one or the other defect ....i have very low t cells and b cells ....something he had said made me think that is probably the reason i still get sick so much...he said one deals with bacterial the other viruses and fuguals (of course he said it much better than i just did but close enough)

i wonder if responding to the flu vac or pneumonia vac are based on whether you have t cell or b cell defect and if you have both it would explain things....

not sure just know i have gotten the flu vac since i can rememeber and i have gotten the flu every year.... this is the first year EVER i wont get the flu vac so we shall see...i always thought maybe i didnt get the flu as bad since i got the flu vac...this yr will tell...

Pam, I sure hope I am not one of the people that have both, B cell and T cell defects. I am counting on my T cells since I have proof of my B cells not working (B cells and plasma cells are the ones that produce immunoglobulins, which are needed to kill some types of bacteria and stuff-by antigen presentation) I am counting on my T cells. I am ordering my T cells to stay healthy. T cells, I am ordering you to ignore your bad genetics and continue to work for me....
I would also hope my NK (natural killer) cells are working to kill viruses and fungus and stuff...
I haven't gotten my flu shot this year... But I thing I will. Maybe I produce low titers that are not detectable but do a little something to help me???????

BTW @Stimpy, the current season flu shot includes the H1N1 (swine flu) vaccine inside it.

well both of mine dont work (b and t cells)no clue why...but that was in the work up by dr schroeder........

so it might explain why he told me NOT to go to a hospital.....and why i am on 55 g ig and daily antibs and still getting sick....

also why he told me not to get the flu shot whereas others it might still get protection....

that is why everyone needs to ask their doc....if i didnt know i would error on the side of getting it...i always thought being exposed to a small controlled amt was better than having the illness itself....

Ooooooooh I got a headache just reading all this LOL! Who is that famous woman doctor that is in New York that is a complete specialist in this disease that I have heard Mark talk about, and also others on here, I wonder what SHE would reccomend. Does anyone know who I am talking about? Is it Rundles? Cunningham? I would totally trust her answer. I really think my doctors are clueless. But I guess it wouldn't hurt to get a flu shot.

Unless you are allergic to eggs it will not hurt you to get a flu shot. It will not GIVE you the flu as it is a dead virus. DO NOT get the Flu mist (nasal mist) vaccine as that has a live virus in it.

Oh it is Dr. Charlotte Cunningham-Rundles who is the CVID guru :)

Oh, o.k., so to get a flu shot wont hurt. But I wonder, does this doctor have some kind of a website that she gives out information, since she is the guru of this. Wouldn't she be the one to know FOR SURE? I mean in any case anything that reguards CVIDS. I think from what I have read on here is that some people who have CVIDS have all this other stuff going on, T cells, B cells, bad lungs, etc.....now is that because they have an "advanced" stage of CIVIDS, are those chronic dibilatating conditions a direct result of having CVIDS, and if so who has told us this, the expert Dr. Rundles? I know Mark and I who have had it for at least 15 years, we do not have continuing conditions as long as we get our IVIG, so is it that we are lucky and the universe just dealt us a lighter shade of grey? And then the rest of you who are on IVIG, are still getting SICK, even though they have been on IVIG therapy for a long time. I really don't know if I have low T cells or B cells, all I know is that they determined I had CVIDS through when I got tested for aids. What blood test do you ask for if you want to check your T & B cells, or does that show in a regular blood draw? I'm just asking because I'm thinking about the future. My doctor told me yesterday, that we have to worry about cysts in the lungs or tumors, oh great.

Stimpy, they might have not told you or they might have not done it.... I know from the original testing I had done in June after my IGG were low they did mitogen stimulation testing, CD4, CD8 counts, etc, etc, etc... all the 'standard' workup for CVID at the Immunologist I go to. Ask your doctor when you have an appointment what your workup shows if you are interested...

@ stimpy at the IDF meeting last sat the question was asked about getting a full genetic workup all docs agreed it does not change treatment and the only reason is for research...the testing is very expensive (one quoted $14,000) with no change in treatment the reason i have a complete workup is because me and my family are a part of dr schroeder's research study that deals with the genetics of cvid....so unless it is for research all docs on the panel (6 of them) agreed that genetic testing wasnt necessary.....that was the panel of docs from the IDF....
apparently my family genetics have been talked about amongst the docs...(atkinson, mannon, and schroeder) they looked liked vampires when they were talking to me...apparently they get excited when it runs rampant in a family....
so consider it a blessing they are not excited to get your blood and play with it! thats a good sign.....not a bad one....