Flu shots

[Guest guest]

Hi:

Then there's always the chance that the PARTICULAR flu bug " they " decide is

the LIKELIEST one to go around, that they then make the vaccine for, is NOT

in fact the one that rages around in the epidemic (which is what happened

here in Ontario last winter). I myself got the flu shot (didn't want to be

sick with littlest ones to look after), and it was supposed to be a flu that

manifested largely as a kind of cold-leading-to-pnuemonia.

Well, the flu that went around, that nearly everyone I know got - wasn't the

same virus, according to the docs. And in fact, anyone who got it pretty

much had to stay glued to a toilet, with a bucket held in front. It was -

well, violent! - and lasted anywhere from an afternoon to 4 days. People

frequently relapsed, with a second bout of it a few weeks later. I got off

lucky, just an evening of it, and Mickey too. My youngest daughter and

husband had the longer version... it was pretty hard on them. You felt like

you got run over - and over and over.

Flu shots are a guessing game... and sometimes they guess right, sometimes

they don't. I've had a flu shot myself, for the last 7 or more years (they

offered it free at work) and last year was the first time I got the flu in

all that time. So overall, I think its worth the chance, for me, but I -

well, not sure I believe it's good, in the long run. The more I read, the

more I doubt. Once I started reading up on vaccinations, what goes into

them, how much research is actually done on them, who gets to approve

them... well, I'm starting to have doubts. One of those individual choice,

best guess things.

Lynn

From: Georgina <gmckin@...>

Reply-

Date: Thu, 06 Sep 2001 11:36:39 -1000

Subject: Re: Flu Shots

Hi,

Year before last, Josh was at Shriner's for about a week. All the

children had to line up to be given a flu shot ... as the nurses said

they couldn't risk an outbreak on the ward. That was their routine.

Well, was the only child who they had orders not to give the shot

to. He was in the midst of a flare at the time but even apart from that,

his doctors have never suggested giving him one. Then again, neither my

daughter nor myself has ever had one either.

If someone were to suggest it, I'd ask about the pros and cons first. At

this point I don't think any of us will be getting one, though. Do the

benefits outweigh the possible risks? I'm not sure. I've heard from

those who said they wouldn't go a season without getting one, just in

case, and others who said they'd never get another one ~ no matter what.

I'm not sure what to think.

Take Care,

Georgina

faces1999@... wrote:

>

> Hi Christy...shame on me I know but I have not had flu vaccines for 12 years

> now. At age 23 when my health was actually ok I decided it inmy best interest

> to have a vacine and woe and behold I was sicker than ever and left with a

> major flare! I am sure it may have been coincidence but due to the " me never

> foregtting " I have not had one since. I guess I should re consider and take

> them again..tho..Anyone else have advise on this issue..Donna

[Guest guest]

Dear Georgina,

Just a quick reply about chickenpox. Kate got her chickenpox vaccination

in Sept. of 1997 -- was sick periodically with colds etc.. then in

December became very ill--was dx. with jra 2 weeks before Christmas.

While she was only just 3 and may have actually had the jra

already--it's always made me wonder.

and Kate (6 1/2 poly)

[Guest guest]

Dear Pat,

Wrote a reply to Georgina about the same thing. My Kate (6 1/2 poly) got

her chickenpox vaccination at age 3--was dx. 3 months later with jra.

Like I said, " Makes you wonder! "

and Kate

[Guest guest]

& Kate, yes it does. My son had chicken pox when he was little, thank

god nothing came of that. So I decide to have get the shot, and here

we are. I asked to doc about it, of course they can't say. I'm just

beginning to think that those people who won't immunize their kids have a

pretty good reason not to. But on the other hand, what could they have

gotten had they not received them? Can't win, can we?

Pat

[Guest guest]

..I got chills when I read what you wrote about when the diagnosis was

made. Tabitha diagnosis was in 1989 but the wierd thing is..hers was also

diagnosed 2 weeks before Christmas and she was released from Childrens

hospital of Pittsburgh on Christmas Eve.

Just got my attention for some reason.

(Tabitha 16..poly)

From: nLilly@...

Reply-

Subject: Re: flu shots

Date: Fri, 7 Sep 2001 07:51:46 -0500 (EST)

Dear Georgina,

Just a quick reply about chickenpox. Kate got her chickenpox vaccination

in Sept. of 1997 -- was sick periodically with colds etc.. then in

December became very ill--was dx. with jra 2 weeks before Christmas.

While she was only just 3 and may have actually had the jra

already--it's always made me wonder.

and Kate (6 1/2 poly)

_________________________________________________________________

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[Guest guest]

Dear Pat,

It really does make you wonder--as I have 3 girls very far apart in

ages-- 21, 15, and of course Kate 6 1/2 (I'll be glad when

she's 7 ! lol!!!) My oldest 2 never got the shots but Kate did--but I

also know of other kids who got them with no problem. Makes you wonder

if something was already inplace that the shots triggered? I remember

that was my first question to her dr. back then and I was assured it

didn't cause it--my only question is--if they can't find a cure because

they don't know what causes it then how can they be so definite?

[Guest guest]

Dear ,

Makes me wonder if there's some correlation between not just shots,

genes etc... but the seasons? This is one guessing game you get tired of

quickly!

P.S. Just wanted to add on to the group: Kate recently got fitted for

" transportation chair " (stroller like wheelchair) for distance " walking "

as it's getting harder for her and her endurance is low--due more to

problems of avascular necrosis of both hips. While she can run (because

you naturally tend to bend over) walking (which requires you to be more

upright) tends to wear her down. She'll only need it for trips to the

mall etc.. where you walk constantly. Dr. wasn't too thrilled when

therapist recommended it--but she only lasted 2 mins. and 4 seconds on

treadmill--so therapist won out. Have to say--we wanted to avoid this

but don't want her suffering. (she's been so tough through the years) So

waiting for insurance approval and to have it built--by the way she

picked hot pink for the seat part!

Everyone take care,

[Guest guest]

Hi my name is n and I am new to this group as of today. I

have an 11 year old girl named who was diagnosed with jra 2

years ago. she never had a flu shot. one shot that does scream

concern is this new hep b shot they are giving to kids today. Has she

had that one? I'm still trying to figure out what happened and when

and what was the cause. There are so many shots we have given our

children any one of them could have triggered this. But the doctors

say noooooooooo. They have no idea. Sometimes I think back over her

health history and she was my healthy kid. My oldest was always sick

when she was little with ear infections, viruses you name it (now 15)

but chrissy only a cold here and there low grade fevers not high and

would get better in 2 days.My older daughter NIcole would stay sick

for a week or more. Go figure. Now she has become very frail and has

just quit soccer because her feet hurt in those stupid cleats. Her

original Doctor from Schneiders Childrens hospital said it wasn't

hereditary food had nothing to do with it just take the Naprosin

which made her really sick. This lady was nuts my daughter was not

that bad and she was recommending methotrexate(spelling?) Since then

We have been doing wholistic health and it has been working fairly

well. She watches her diet (no

night shade vegtables, pizza is a no no, but she cheats, dairy we

keep it very low and now they are saying watch the carbohydrates.

High sugar can also make her feel worse. She has it in her hands and

feet and the summer was pretty good with the jra but she has been

sick with ear infections and soar throats june,july and august. Of

course she has been on antibiotics and that has kept the inflamation

down. A doctor who I work for wants her to take motrin 2xa day now

because her rh factor went from 50, 2 years ago to 115 as of this

month. Any advice on medication Im worried about long term and things

not working after awhile. Im still not sure if I want to stop

wholistic therapy. Confused as hell.

[Guest guest]

, that's my exact feeling. Because they don't know, they don't seem to

want to consider it. I suppose if any of them admitted that it could have

caused it, they would be an onslaught of lawsuits against the pharmaceutical

companies.

After all I have seen and read about chicken pox, it really makes me believe

it. Pat

[Guest guest]

..i agree about the guessing game! I don't even bother with trying to

figure it out or put blame on anything anymore. My one doctor said it was

hereditary..I can accept that because on my dads side somewhere in past

generations..someone had jra..also. So the only thing I think as parents we

can do, is accept it. As far as the shots go, I really don't think it was

related to Tabithas JRA.

karen

From: nLilly@...

Reply-

Subject: Re: flu shots

Date: Sat, 8 Sep 2001 00:57:21 -0500 (EST)

Dear ,

Makes me wonder if there's some correlation between not just shots,

genes etc... but the seasons? This is one guessing game you get tired of

quickly!

P.S. Just wanted to add on to the group: Kate recently got fitted for

" transportation chair " (stroller like wheelchair) for distance " walking "

as it's getting harder for her and her endurance is low--due more to

problems of avascular necrosis of both hips. While she can run (because

you naturally tend to bend over) walking (which requires you to be more

upright) tends to wear her down. She'll only need it for trips to the

mall etc.. where you walk constantly. Dr. wasn't too thrilled when

therapist recommended it--but she only lasted 2 mins. and 4 seconds on

treadmill--so therapist won out. Have to say--we wanted to avoid this

but don't want her suffering. (she's been so tough through the years) So

waiting for insurance approval and to have it built--by the way she

picked hot pink for the seat part!

Everyone take care,

_________________________________________________________________

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[Guest guest]

Glad to meet you n! Welcome to the group! I'm 39 and have had JRA for over

30 years now. As a teenager My mom also had me on a restricted diet Night

shades, sugars, food dyes, msg,etc. I followed this very close for about three

years. The end result was that my allergies were much much better and as I

believe that my allergies were a trigger to this whole JRA thing this all seems

to just make good sense that one would improve the other. Also joint pain, and

stiffness are also symptoms of allergic reactions. So in my case I was not to

know which was causing which! I still did have flares during the strict three

years but I wonder if they may have been much worse had I not had diet

controlling allergic reactions. However I don't feel diet is a cure by no means

or that you can ignore the potential damage that inflamation ,if gone unchecked

or untreated, can inflict even later on in life. Because not all joint damage

shows up right away. Inflamation as a child will set your joints on a path of

destruction that can reach out to your old age and inflict damage to the point

of replacements ...even though your sedimentation rates reflect a remission

status. As for your wholistic therapy ..is it working really well ...or is your

daughter simply learning to compensate and deal with her symptoms ..a thing that

all JRAers do?

Well I hope I haven't upset you with what I've had to say ..this is just my

OPINION !!!!

As a mom myself I know the huge, huge challenge this disease poses, with all the

decisions, what's right for my child? What's wrong for my child? We walk a fine

line of risk taking and guessing and the ultimate loss if there is one will be

placed on our wonderful children. Most of all we know are children the best and

no matter what a doctor recommends we have the great duty of weighing the

options , the pros , the cons and how will my child handle this on a daily basis

.. The sometimes enevitable choices that are often bad and worse, can make our

jobs as mom's a living nightmare. Knowledge is power and the is a great

source for knowledge , support, friendship , venting, relaxing , laughing, and

caring!!!! KEEP Smiling n and :):):)Tree

Re: flu shots

Hi my name is n and I am new to this group as of today. I

have an 11 year old girl named who was diagnosed with jra 2

years ago. she never had a flu shot. one shot that does scream

concern is this new hep b shot they are giving to kids today. Has she

had that one? I'm still trying to figure out what happened and when

and what was the cause. There are so many shots we have given our

children any one of them could have triggered this. But the doctors

say noooooooooo. They have no idea. Sometimes I think back over her

health history and she was my healthy kid. My oldest was always sick

when she was little with ear infections, viruses you name it (now 15)

but chrissy only a cold here and there low grade fevers not high and

would get better in 2 days.My older daughter NIcole would stay sick

for a week or more. Go figure. Now she has become very frail and has

just quit soccer because her feet hurt in those stupid cleats. Her

original Doctor from Schneiders Childrens hospital said it wasn't

hereditary food had nothing to do with it just take the Naprosin

which made her really sick. This lady was nuts my daughter was not

that bad and she was recommending methotrexate(spelling?) Since then

We have been doing wholistic health and it has been working fairly

well. She watches her diet (no

night shade vegtables, pizza is a no no, but she cheats, dairy we

keep it very low and now they are saying watch the carbohydrates.

High sugar can also make her feel worse. She has it in her hands and

feet and the summer was pretty good with the jra but she has been

sick with ear infections and soar throats june,july and august. Of

course she has been on antibiotics and that has kept the inflamation

down. A doctor who I work for wants her to take motrin 2xa day now

because her rh factor went from 50, 2 years ago to 115 as of this

month. Any advice on medication Im worried about long term and things

not working after awhile. Im still not sure if I want to stop

wholistic therapy. Confused as hell.

To manage your subscription settings, please visit:

For links to websites about JRA:

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[Guest guest]

Dear n,

Kate's been on diffferent meds over the past 3 1/2 years--some with side

effects. She started out on Naprosyn (developed severe bruising and

scarring of her skin) Methotrexate (went into TOTAL remission--but her

liver counts sky rocketed through the roof--so was pulled off that. She

is currently on high doses of Ibuprofen and Enbrel injections. She takes

Prilosec to keep stomach problems from meds from getting bad. She can't

take much of anything else as she suffers from avascular necrosis of

both hips and some of the " stronger " meds would only make it worse. I

tell you all this not to worry you---but to be honest with you. There

are a lot of kids in this group who are on the meds Kate can't take and

are doing well with them. Every child is different in what they can take

and what they can't. I think others would agree that it's alot of trial

and error. I worry alot with Kate about side effects but I had a very

dear elderly neighbor as a friend who had rheaumatoid arthritis her

whole adult life and refused to see a dr. or take meds. She was totally

crippled and bedridden by the time she was 50. She's now 82 and in a

nursing home and while her mind is all there (more than mine! lol!) she

is so disfigured and twisted that it just breaks your heart--and also

makes you think that maybe the side effects of these meds aren't as bad

as the outcome without them. I hope I haven't depressed you but just

wanted you to know I've personally seen both sides of the issue. I

think all you can do is follow your heart and instincts as a parent and

know that your doing the best that you can. Good Luck

and take care.

[Guest guest]

:

Thanks for the info. I have been reading through all the mail today and its a

little nerve racking but at least I have the info and other parents who care

and share. I don't want her to be a cripple and I want her to lead the best

life possible and like you said it trial and error and gut feeling. I am in

the process of looking for a rumy because the last one was not tolerant of

the wholistic method and would not even work with me. We live in NY so any

good suggestions are appreciated. Thanks

n

[Guest guest]

Dear n,

I'm not sure of the drs. in New York as I live in Indiana. I'm sure

there are other members who might know. I think you should maybe check

with your local hospitals or if there's an Arthritis Chapter there then

give them a call. I've found that with different insurances etc..you may

have to go one place or another. I also think it's a good idea to try

and keep them with a pediatric rheaumy as the adult rheaumy can treat

them too but kids with jra have so many different issues with the

disease. I'm sorry I'm not much help--but keep me posted and let me know

how things are going.

Take care

[Guest guest]

n,

Where in NY are you? We are in Rome and there is another

family in the group from Utica.

Teri (mom of )

[Guest guest]

Terri

Sorry I took so long to respond. We are on Long Island. The shock here has

been unreal. We had family that worked in the area but all are ok. It took us

all day and into the evening to get to everyone. My duaghter

however has child in her class whose dad is a NYC Firefighter and he is

missing. Its been a little crazy here trying to keep calm and giving blood

and also shopping for supplies to send to the rescue teams. Today was my

first chance to sit down and go through some of the mail. I feel this entire

nation needs to pray for all the families and for our President and the other

powers that be ,to make the best possible decision to this horrific attack .

Just my 2cents. is still sick with something. It started with a

fever then the throat then a double ear infection which as been the case over

the last three months. This happened in June, July then August. I don't know

what is going on but she has been on antibiotics on and off all summer.

Thanks so much for asking and thinking about us. Have a great day. Talk to

you soon.

[Guest guest]

Hi n,

So glad to hear that you and your loved ones are okay. I grew up in Long

Island. Have been getting emails from my old friends there and nearly

everyone knows at least one person who was at the World Trade Center

that day. Fortunately, most are safe. It must be so hard especially for

the children, like your daughter and her classmates, knowing that their

friend's Dad hasn't been found. That's so sad.

I'm sorry to hear that is still sick. How's her arthritis

doing? Is she still having some pain? Has she still been taking just the

Motrin? I was concerned when I read that her RH factor increased like

that in the past two years. I guess after having that bad experience

with Naprosyn, it can scare you away from wanting your child to take

strong meds ... but there are quite a few NSAIDs on the market now so if

your child has a bad reaction to one or doesn't respond as well as you'd

hope, there are others that can be tried. Not to say that making healthy

changes in her diet like reducing her sugar and red meat intake and even

avoiding the nightshade family of foods isn't a good thing ... just that

JRA is sometimes hard to treat and manage with these kinds of mild

approaches. It can cause some serious damage. That's probably why that

one doctor suggested starting a disease modifying anti-rheumatic drug

like methotrexate. To try to prevent long term damage from taking place.

It may sound scary but if has a positive RH factor, she may be

at an increased risk of having some damage to her joints.

Has she had an MRI done or xrays, of her hands and feet, and a bone

density test? It might be a good idea to have these sorts of tests done

so they'll have a baseline image to go on to see if things are staying

the same or progressing, as time goes on. They can check for slight

cartilage damage, soft tissue lesions, osteoporosis. Things that a lot

of people feel are precursors or predictors of later joint damage.

Have you found a pediatric rheumatologist in your area yet, that you

feel confident about working with? Two in New York on our groups' list

of doctors, are Dr. Imundo and a Dr. Norman Ilowite, in New Hyde

Park. Dr. Lehman, who's well known and very respected in the field of

pediatric rheumatology, is also located in NY. In the city. There's a

website you can visit to help you locate physicians in a given area,

http://my.webmd.com/find_a_phys/doctor You start a search by location

and can find more about them and their credentials, which is good for

getting preliminary information. There's also a section where patients

can rate the doctors, which may give you a better idea before you even

make the first phone call. You might want to include your opinions about

that doctor you saw in the past, so others will know. Anonymously.

Of course, the American College of Rheumatology probably has the best,

most comprehensive listing. You can find doctors in NY state by

visiting: http://www.rheumatology.org/directory/states.html#NEW YORK

I hope some of this helps, maybe even encourages you to keep searching

for the right doctor to help you treat ?

Take care,

Georgina

doepp82@... wrote:

>

> Terri

> Sorry I took so long to respond. We are on Long Island. The shock here has

> been unreal. We had family that worked in the area but all are ok. It took us

> all day and into the evening to get to everyone. My duaghter

> however has child in her class whose dad is a NYC Firefighter and he is

> missing. Its been a little crazy here trying to keep calm and giving blood

> and also shopping for supplies to send to the rescue teams. Today was my

> first chance to sit down and go through some of the mail. I feel this entire

> nation needs to pray for all the families and for our President and the other

> powers that be ,to make the best possible decision to this horrific attack .

> Just my 2cents. is still sick with something. It started with a

> fever then the throat then a double ear infection which as been the case over

> the last three months. This happened in June, July then August. I don't know

> what is going on but she has been on antibiotics on and off all summer.

> Thanks so much for asking and thinking about us. Have a great day. Talk to

> you soon.

[Guest guest]

Hi Georgina,

is taking the Motrin but not every day. There are days she feels

fine and her hands and feet are not that swollen But I know because she

lives with pain every day it doesn't seem so bad to her on certain days. Her

sed rate on the last blood test was 11 even though the rh factor jumped. She

has been getting a lot more rest since quitting soccer and swimming. We

started an exercise program at home. We have an orbitrek machine and she gets

on that 2X's a day and uses some light weights for the muscles in her arms,

which to us seemed to be getting rather thin.WE also do some stretching

exercises. Hopefully this will help keep her strength up. did have

x-rays done on her hand and feet and is going for a done density in 2 weeks

for that base line. So far the X-rays look normal not damage to the bones.

I'm still looking for a good Doc and I appreciate the names you gave me .I

have heard of Dr. Illowite he is affiliated with Schniders Children's

Hospital and that was the first place we went and saw Dr.Beth Gotlieb. She

was just given a grant by the arthritis foundation for research on JRA and

the best meds to treat with. I will definitely keep looking for a Doc who

will work with us wholistically and also if things worsen will be there to

make the changes they feel necessary . Thanks so much for your help and

support

n

[Guest guest]

[ >> Please pardon me if this posts to the list more than once.

groups listserv is bouncing emails, thus I am attempting to post hoping

one of the three addresses I have will get through. << ]

Lorraine wrote:

> Hi folks, What are your thoughts on the annual flu shot? My work

Take large 500-1000 mg daily doses of Vitamic C instead. Not only is it

safer, it works better. *** MO, of course. ***

Regards,

-----------------------

Geoff Crenshaw, ACC ** Usual Disclaimers **

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[Guest guest]

Thanks to all of you who responded to my question re: flu shots. Take

care, Lorraine

[Guest guest]

In a message dated 10/24/2001 11:55:26 PM Eastern Daylight Time,

marleyfalina@... writes:

<< The only problem I anticipate with the flu shot is

that I wanna do it myself and in the left thigh, not

the arm. >>

Diane - I doubt your doc.'s office will let you inject yourself - probably

insurance reasons, but I guess you could always ask. If you feel strongly

about having it in the leg rather than arm, I'm sure they would inject you

there if you asked.

[Guest guest]

hi chellie and other new-comers, i am a jra-er myself and do not post as much as i used to but i have something to add on the flu shot matters. last year i did not get a flu shot, my docs said there was some kind of shortage last year. i got the worst case of flu i have ever had in my life and it eventually turned my fate that i would become very ill with kidney probs, and hospitalized. afterwards, i was dx'd with a weird kidney disease. the docs have no idea if my having had that flu so violently and soo long had anything to do with my kidneys but could not say it didnt either. in other words, i am getting my shot this year, shortage or not. goodluck with your little ones, brandy ,24, dx'd at 5 with systemic jra Flu Shots I am glad other parents have the same concerns as I do. Tyler's Pulmonologist wants him to have a flu shot this year because on top of his active JRA he has been experiencing more frequent asthma attacks and respiratory illnesses.At first his Rheumy said no live vaccines,but now says the need outways the risk. My concern is what will this do to his RA,will he really benefit from the "risk?" He misses alot of school now and progress reports come out on the 9th. Although, he is only 5, I like for him to lead as normal of a life as he possibly can, and being in school is important. Being a preemie he had developmental delays. When he is in school he does great with his work(when motivated)I have seen progress in speech and writting.Now the decision is up to me Flu shot or Not........Chellie- Mom 2 Tyler- For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi Chellie:

Just my 2 cents but Mickey flared really badly one year just after the flu shot, and while her rheumies wouldn't seriously consider a connection, I sure did. She had been doing really well, and ended up in the hospital with a major flare. So although the doc keep saying we should, I keep my own council on it and we don't anymore.

Lynn

From: chellieae@...

Reply-

Date: Sun, 28 Oct 2001 19:25:46 -0000

Subject: Flu Shots

I am glad other parents have the same concerns as I do. Tyler's

Pulmonologist wants him to have a flu shot this year because on top

of his active JRA he has been experiencing more frequent asthma

attacks and respiratory illnesses.

At first his Rheumy said no live vaccines,but now says the need

outways the risk. My concern is what will this do to his RA,will he

really benefit from the " risk? " He misses alot of school now and

progress reports come out on the 9th. Although, he is only 5, I like

for him to lead as normal of a life as he possibly can, and being in

school is important. Being a preemie he had developmental delays.

When he is in school he does great with his work(when motivated)I

have seen progress in speech and writting.

Now the decision is up to me Flu shot or Not........

Chellie- Mom 2 Tyler-

[Guest guest]

I am by no means an expert on the subject but I know they would not let me

take one the last two years because of the usage of immuno suppressors when

for the treatment of RA...they did this even though I wasn't on any immuno

suppressors (I was on Minocycline and Celebrex)....HOWEVER....from what I

understand the flue shot does not use a " live " virus so it is thought it

should not have an ill effect on someone taking immuno suppressors....I

guess when it gets down to it it is really a matter of opinion.....BTW....I

got one yesterday...so far I am fine.....though a friend of mine who does

NOT have RA was ill today.

Tony

rheumatic flu shots

> I know this topic has been dealt with before, but like anything else, I

find

> if I don't need the information right away, I tend to forget it! What is

> the feeling about getting flu shots when you have RA?

>

> Thanks,

>

> (RA 25+ years, AP since Nov. 97)

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

HOWEVER....from what I

> understand the flue shot does not use a " live " virus so it is

thought it

> should not have an ill effect on someone taking immuno

suppressors....

As I recall that is similar to what one of my NIH docs told me - he

saw no problem since it was not a " live " virus.

Mark