Pneumonia Shot - Confused!

[TOBEY32]

I've heard both regarding this. The last from my lung doc who suggested I get it.
I've gotten the flu shot w/ no problems.
Did you get/has it been suggested you obtain the pneumonia shot? Any problems if you did?

[HypnoticEyez]

I got the flu shot before being discharge from the hospital 9/16/2011 and had no problems because of it.

[TOBEY32]

Got the flu shot already. It was the pneumonia shot I wasn't sure of...

[HypnoticEyez]

I was suppose to get the flu shot when I was in the hospital, but at the time they were only giving it to hospital employees. Because I had already started Cytoxan while in the hospital my doctor said It was too late to get it. She wasn't very happy as she thought I had already had it in the hospital.

[annekat]

My lung doc suggested a flu shot but I haven't gotten it. He didn't suggest a pneumonia shot, possibly because I am on Bactrim DS. A doctor friend, a pediatrician, on finding out I have WG, suggested I get a pertussis shot (whooping cough) because cases are on the rise. I haven't rushed out to get any of these shots because I don't know the repercussions for people with WG on immunosuppressants, and neither of these docs are WG specialists. I've actually never gotten any of these shots, since before knowing I had WG, and haven't felt it was a big deal not to. I've always felt pre-WG that my immune system was pretty good at fighting these things off. Maybe I just don't like shots.

Anne

[Dirty Don]

The explanation I got from my doc was that since I was already on mtx & pred by the time they even thought about shots I shouldn't get one or either...but, they did recommend my wife get both of those shots as they don''t want her getting anything to pass on to me. I have been told that mtx and pred react and suppress even the shots...immune system thinks we're sick again and the mtx is already battering it...LOL...anyway, best of luck, keep an open eye and mind to this thing...

[Thakator]

My rheumie insisted on my getting both the flu shot and a pneumonia shot before starting me on cytox. - - especially the pneumo. one. There's a particular form of pneumonia (a nasty one) that needs to be guarded against while immunosuppressed, hence the shot. She also put me on Bactrim and kept me on it all the while I was on the cytox.

[annekat]

My rheumie insisted on my getting both the flu shot and a pneumonia shot before starting me on cytox. - - especially the pneumo. one. There's a particular form of pneumonia (a nasty one) that needs to be guarded against while immunosuppressed, hence the shot. She also put me on Bactrim and kept me on it all the while I was on the cytox.

My understanding was that the Bactrim DS, three times a week in a pill, is to guard against that particularly nasty form of pneumonia, unless you are talking about a different nasty one. But a shot in advance of that would certainly help, too.

Anne

[Sangye]

Personally I don't get within 10 feet of any vaccines. The assumption is that the vaccines actually do what they say they do and that they don't harm you in the process. I think both those assumptions are wrong.

But if you do want to get a vaccine, it's important to do your research beforehand and make a decision based on facts, just as you would with any other drug or medical procedure. If you feel the facts support the decision to get a shot, then do the shot and don't look back. And shots or no shots, you still have to do the same things to protect yourself from infection.

[delorisdoe]

Is the pneumonia shot different than the flu shot as far as a live virus vs a dead virus? also, If you take bactrim does that negate the need of the shot.

[Al]

Is the pneumonia shot different than the flu shot as far as a live virus vs a dead virus? also, If you take bactrim does that negate the need of the shot.

Bactrim is used to guard against some kinds of pneumonia, as Anne says, that are more common to CTX users. It is also sometimes uses prophylactically to keep S. Aureus ("Staph") microbes tamped down, on the assumption that staph infections can lead to a flare.

[HopeinTN]

Yes, the Bactrim helps fight off a PCP infection in the lungs.

Pneumocystis pneumonia (PCP) or pneumocystosis is a form of pneumonia (http://en.wikipedia.org/wiki/Pneumonia), caused by the yeast-like fungus (http://en.wikipedia.org/wiki/Fungus) (which had previously been erroneously classified as a protozoan (http://en.wikipedia.org/wiki/Protozoa)) Pneumocystis jirovecii (http://en.wikipedia.org/wiki/Pneumocystis_jirovecii). Pneumocystis is commonly found in the lungs of healthy people, but being a source of opportunistic infection (http://en.wikipedia.org/wiki/Opportunistic_infection) it can cause a lung infection in people with a weak immune system (http://en.wikipedia.org/wiki/Immunodeficiency). Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system.

[HopeinTN]

...I did not get a Pneumonia or flu shot. I'm leary since I've never had either and I guess it scares me. I hear it's a good idea to get both though.

[Al]

...I did not get a Pneumonia or flu shot. I'm leary since I've never had either and I guess it scares me. I hear it's a good idea to get both though.

BTW, HK, I love your epigraph. In my business, we have a similar rule: Never allow a person to touch electronic equipment who cannot grow green plants.

Al

[HopeinTN]

That's a good one Al.

[LisaMarie]

ok...Here my opinion....i had to get both shots before they would let me out of the hospital last year. Bactrim DS is an antibacterial so it does not effect a virus...and as it was explained to me it was in my best interest to have both vaccines then risk getting sick and ending up back in the hospital:rolleyes1:

[Sangye]

ok...Here my opinion....i had to get both shots before they would let me out of the hospital last year.
What do you mean? No one can force you to take those vaccines.

[Al]

ok...Here my opinion....i had to get both shots before they would let me out of the hospital last year....it was explained to me it was in my best interest to have both vaccines then risk getting sick and ending up back in the hospital

Huh? You were in prison and these were the conditions of your parole? Last time I checked, LisaMarie, no one is captive in a hospital except by court order. You don't seem felonious to me, so why are they telling you what to do? I guess I'm not getting it....

Al

[annekat]

Huh? You were in prison and these were the conditions of your parole? Last time I checked, LisaMarie, no one is captive in a hospital except by court order. You don't seem felonious to me, so why are they telling you what to do? I guess I'm not getting it....

Al

Well, in Lisa Marie's defense, it can be a little hard to argue with doctors and hospitals, especially if you haven't heard all sides of the issue yet and have no reason to question what they are telling you...... It is unclear here whether she did argue or question them about it before they "made" her take them. In any case, it sounds like it turned out OK for her, which is good. Personally, I wouldn't want to be in the position of them telling me I had to take the shots.

[Al]

Well, in Lisa Marie's defense, it can be a little hard to argue with doctors and hospitals, especially if you haven't heard all sides of the issue yet and have no reason to question what they are telling you...... It is unclear here whether she did argue or question them about it before they "made" her take them. In any case, it sounds like it turned out OK for her, which is good. Personally, I wouldn't want to be in the position of them telling me I had to take the shots.

You're right, of course, Anne. In fact, I know from personal experience as well that it is hard to argue with authority. I think, though, one of the things that is valuable about this forum is that our own feelings are more important than simply going along with someone else's plan regarding my pain. Flu shots (or whatever) may (or may not be) a good idea, but you, Dr. Bigshot (or Nurse Bigshot, or whoever) need to convince me!

Al

[annekat]

You're right, of course, Anne. In fact, I know from personal experience as well that it is hard to argue with authority. I think, though, one of the things that is valuable about this forum is that our own feelings are more important than simply going along with someone else's plan regarding my pain. Flu shots (or whatever) may (or may not be) a good idea, but you, Dr. Bigshot (or Nurse Bigshot, or whoever) need to convince me!

Al

Of course, I agree with you. The key point is the value of this forum, giving us concrete reasons to question some of these things, in addition to any feelings of reluctance we may already have had. I've always felt uncomfortable about flu shots, but couldn't give a good reason. And I know there must be good reasons to get them. But as a person with Wegener's who reads this forum, I've learned enough to question a lot of things said by doctors and nurses who may know next to nothing about the disease. Even the ones that know a fair amount, but don't have it themselves and haven't read the forum. The hard part can be convincing THEM that you haven't been convinced. And many people could be convinced by them pretty easily if not armed with the knowledge available here.

Anne

[LisaMarie]

I almost died last year...and being the stubborn nurse that I am...I bargained....from my experience and since I work in a hospital I was advised it was in my best interest.to.take both...I lost a close friend to the flu a few years back...she left behind 4 kids under the age of 12....so I want out of the hospital....14days was long enough and I wanted to return.to work asap...O2 and all..so the deal was both shots...I always get the flu one..and I could go back to work on a week if I took it easy...I have a job that is more like family so I took the shots....I never want to be in the hospital that long again..but with WG I probably will be

[Al]

Of course, I agree with you. The key point is the value of this forum, giving us concrete reasons to question some of these things, in addition to any feelings of reluctance we may already have had. I've always felt uncomfortable about flu shots, but couldn't give a good reason. And I know there must be good reasons to get them. But as a person with Wegener's who reads this forum, I've learned enough to question a lot of things said by doctors and nurses who may know next to nothing about the disease. Even the ones that know a fair amount, but don't have it themselves and haven't read the forum. The hard part can be convincing THEM that you haven't been convinced. And many people could be convinced by them pretty easily if not armed with the knowledge available here.

Well said, Anne. You raise two points I consider worth keeping in mind for all of us: 1) The doctor may (or may not) know more than you, but maybe not that much more, and 2) when all is said and done, he or she gets to go home at night, to a cocktail and meal probably prepared by someone else...and forget about your problems. That is, he or she does not live in your body. You don't have the same luxury of forgetfulness. So, we have to keep in mind that the doctor is our employee (though one with many different bosses), not your manager. When I built my house, I hired a competent head carpenter to do the work, hire the best crew, and help me decide on the material. This doesn't mean that I took his aesthetic advice without a thorough discussion. He has never had to live in my house. I made the same contract with my doctor. And we shook on it.

Al

[Al]

I almost died last year...and being the stubborn nurse that I am...I bargained....from my experience and since I work in a hospital I was advised it was in my best interest.to.take both...I lost a close friend to the flu a few years back...she left behind 4 kids under the age of 12....so I want out of the hospital....14days was long enough and I wanted to return.to work asap...O2 and all..so the deal was both shots...I always get the flu one..and I could go back to work on a week if I took it easy...I have a job that is more like family so I took the shots....I never want to be in the hospital that long again..but with WG I probably will be
You never know, of course,Lisa Marie, but you may not have to be in the hospital again. I go with the old saw about hospitals being bad places for sick people. After my first long stint, I decided that everything else wold be as an out-patient--and (so far) it has been. It wasn't just the personnel--some were great, others just putting in their time. It was the whole schtick. In any case, I decided that I had a good family already, thank you very much, and that situation did not have to become a surrogate one! As for flu shots in particular, I am of two minds. But I am quite set against anyone telling me what to do with m body unless there is a good reason. Best of luck in dealing with your tormentors, whoever they may be!

Al

[annekat]

I almost died last year...and being the stubborn nurse that I am...I bargained....from my experience and since I work in a hospital I was advised it was in my best interest.to.take both...I lost a close friend to the flu a few years back...she left behind 4 kids under the age of 12....so I want out of the hospital....14days was long enough and I wanted to return.to work asap...O2 and all..so the deal was both shots...I always get the flu one..and I could go back to work on a week if I took it easy...I have a job that is more like family so I took the shots....I never want to be in the hospital that long again..but with WG I probably will be

I don't blame you for making the decision you did, and I'm glad it had no negative consequences. A lot of things are a gamble in the world of medical treatments. Since you had flu shots before, you had less reason to feel uncomfortable with them. Being a nurse, I'm sure you know more about many things than some of us. For me it's all hearsay, some people have had problems with flu shots, and some haven't, but having this disease, I'd rather err on the side of caution. I'm lucky I haven't had to be in the hospital for any real length of time with Wegs, nor have I lost a friend to the flu, so I haven't been in your shoes.

Anne

[delorisdoe]

ok...Here my opinion....i had to get both shots before they would let me out of the hospital last year. Bactrim DS is an antibacterial so it does not effect a virus...and as it was explained to me it was in my best interest to have both vaccines then risk getting sick and ending up back in the hospital:rolleyes1:

Taken out of context this sounds so simple..."no I am not getting it". For what ever it is worth LisaMarie, I knew what you meant when you said it, and I have been in that position before. I dont know if I am explaining myself so well. I would assume that seeing as you are a nurse you know when you do and do not want to follow a doctors advice. I still sometimes look at my doctors like all knowing gods...I am quite sure you are past that.

Wouldn't it be nice If we knew for sure what to do with this disease all of the time?

[KathyB]

When I was first diagnosed in late August, the doctors said no to the flu shot. Then I contracted pneumonia later in October and they said no to the pneumonia shot! But once I began meds for pneumonia, they did give me the flu shot! And my husband got his as well! No problems.

[LisaMarie]

I made the right choose for me..My WG specialist and ID and Lung doc all wanted me to get them...I asked Dr Specks and he said ok for this year so I got the flu this year too.....I will have to have an overnight stay when the open my trachea back up ...it is closing off again so i am glad cause as it was previously said....hospital s can make you sicker.....Will see when I go to mayo where my broncholes are at and what they want to do.....it will be an interesting christmas:rolleyes1:

[Chris G]

Lisa Marie - do you which pneumonia the vaccine covers?