Re: Digest Number 1316

December 9, 2000

Hi Everyone, hope your holidays were great! I haven't posted in about two

weeks. I had so many posts I actually had to delete some because I couldn't

read them all. I hate to do that, because I know I'm probably missing out on

some great information and new members. Oh well, there's only so much time

to spare.

Has anyone gotten a flu shot this year? I thought if your immune system was

down and you were on Imuran you couldn't have any vaccinations. My liver doc

said I could one. They're usually recommended for small children, older

folks and people with compromised immune systems. I'm really confused over

this. What have you guys been told? And also, what about he dentist? I

need to go, but I've heard I need to take antibiotics first.

I hope you all are doing well. Continue to focus on being healthy. At this

same time last year I was bed-ridden because I was so sick with AIH. This

year I feel a lot better. I just pray that it lasts.

Take care, from Louisiana AIH 99'

December 9, 2000

In a message dated 12/9/00 4:38:35 PM Pacific Standard Time, boyds59@...

writes:

<< Has anyone gotten a flu shot this year? I thought if your immune system

was

down and you were on Imuran you couldn't have any vaccinations. My liver

doc

said I could one. They're usually recommended for small children, older

folks and people with compromised immune systems. I'm really confused over

this. What have you guys been told?

And also, what about he dentist? I need to go, but I've heard I need to

take antibiotics first. >>

I, too, am confused. I thought I read on my Imuran insert that flu shots

weren't possible. When I saw my gp for a regular checkup she insisted I

quickly grab one of the five shots the large HMO had available that day.

When I questioned Imuran/flu shot compatibility, she said that LIVE vaccines

are risky, but not flu shots. She's good, and she's careful, so I think

she's right.

Regarding dental work: My gastro guy and my dentist are both notables in

their fields. Neither had heard that toothcleaning might pose a problem. I'

ve read that oral surgery should be avoided with Imuran. On discussion

boards, I've heard people say that their dentists refused to work with them

or insisted on their taking antibiotics.

As I don't actually see my gastro guy, the question about having my teeth

cleaned was relayed by phone through an assistant.. I call in after my

weekly blood test and an assistant reads off the figures for what I should

take through the next week. I feel like a walking test tube, not a human.

However, I AM recovering uneventfully, and they haven't skimped on tests.

Last week's New York Times Science section had an interesting article about

doctors' not liking to make prognoses and being quite bad at doing so. One

study showed that doctors' prognoses were inaccurate to a factor of five in

the positive direction -- that they predicted that recovery would be five

times as rapid as it proved to be, or or that an individual would live five

times longer than was the case.

As background for the discussion, I'm taking 100 mg of Imuran a day. I'm

down . from 80 mg Prednisone to 10 mg, and my quite extreme liver levels

(discovered in May when I had severe jaundice and itching) are now normal.

You said you were in bed throughout last Christmas; I hope this year is

better for you. Have you had a transplant, or are you dealing with AIH on

its own?

December 9, 2000

My gp was VERY insistent on my having the shot. I was a bit reluctant, as

the waiting room seemed to be full of people in much worse shape than me --

and the HMO had only five shots total that day. My point is that she, at

least, believes it to be extremely important for AIH people to have.

Our options are so few when we do get sick. I had a cold this summer, and I

felt more ill than I would have imagined possible. It took me a month to

recover. Think carefully before turning down a flu shot if you can get one.

(Are any of you able to take Tylenol, etc? )

Also, I'm sure you've all been warned to stay away from anyone who's had a

live vaccine, as for polio, measles, or chickenpox.

December 9, 2000

In a message dated 12/9/00 5:28:42 PM Pacific Standard Time,

sue@... writes:

<< I don't think I'll get the flu shot. I haven't for years and years.

The last one I got (and I think the first) was the 'swine flu' shot

given in the mid to late 70's. That one scared me - too many people got

sick and some died. So, I'll take my chances and just be super careful

around people. >>

I'm repeating my message, because I didn't think to add my " name " at the

bottom. I'm very, very new at this process. Also, I want to add that this

may be a very difficult flu year because fewer people than usual will have

flu shots. Three years ago (The Australian flu year) I came down with it. I

believed myself to be extremely healthy back then, but I was in the hospital

for three days in a strange town and in a motel room for days afterward

before I was well enough to fly home. Even for those who are well, flu can

literally be a killer.

Harper AIH California

flatcat9@...

December 9, 2000

In a message dated 12/9/00 6:48:27 PM Pacific Standard Time, gefox@...

writes:

<< My dentist scripted set dosages and set times to take Ampycillin before

he would work on me. >>

Oddly, my gastro guy has hypothesized that Ampycillin may be a triggering

mechanism for AIH. He says he's seen an unlikely number of people who

developed AIH after taking Ampycillin -- me being one of them.

I'm very, very new at this. Can someone let me know if my messages are going

through? I'm not sure if I'm supposed to go through another step to respond

to this kind of message or whether it's just like regular e-mail.

December 9, 2000

In a message dated 12/9/00 8:21:58 PM Pacific Standard Time, gefox@...

writes:

<< Flatcat9..... you are doing just fine as far as I`m concerned.... That`s

a new one on me...seems like no matter what med you take it carries a

consequence.... many times tho it`s just a trade off...in my case I

developed bone marrow cancer from taking prograf.... but it was a

pretty good gamble-- the alternatives were much more immediate.... my

hep. feels I devloped AIH from numerous transfusions I had in

`93,`94.`and 95 or it even could have been carried in my donor`s

liver...usually it`s supposed to be gene related. Oh,well doesn`t matter

how I got it. Actually I haven`t seen a dentist since before my

transplant. Do you have a name besides Flatcat9 or did I miss it? The

members here know each other by at least thier 1st name if not thier

last.

Jerry Fox >>

I've since entered my name in the Profiles area. I'm just learning how all

this operates; I used my company's e-mail system at work, and only for work,

and it's quite specialized. I'm Harper , and I live in California.

Yes, the tradeoffs are interesting. I'm aware that Prednisone can cause

cataracts to develop very quickly and bones to go bad even quicker. But

without a liver, you don't have much use for clear eyes and strong bones.

There's a Steve movie that has him falling in love with a brain in a

jar. That's not my ideal future, but I guess I'm williing to trade off some

parts of my body to keep the basic burner going.

December 9, 2000

In a message dated 12/9/00 8:21:58 PM Pacific Standard Time, gefox@...

writes:

<< n my case I developed bone marrow cancer from taking prograf. >>

I'm sorry to hear that. I've rationalized that cancer from Imuran will take

longer to develop than cirrhosis from taking nothing. Is treatment for the

bone marrow cancer working at all? Life looks very different that it did

before illness. I try to view is as an enriching experience, showing me more

aspects of life, showing me how life is for people who were, I'm sorry to

say, invisible to me before.

Harper AIH California

December 9, 2000

In a message dated 12/9/00 8:22:24 PM Pacific Standard Time,

tnunley@... writes:

<< I was transplanted at CCF 5 yrs. ago >>

What/where is CCF?

Harper

flatccat9@...

December 9, 2000

In a message dated 12/9/00 8:45:19 PM Pacific Standard Time, gefox@...

writes:

<< Thanks Harper.... I saw that movie too good analogy..... In my case I`ve

lived at least 5 yrs. longer than I would`ve without a transplant so....

who am I to complain? This stuff now is a piece of cake. I find it

ironic that my cancer will destroy my bones and the meds. I take are

helping it along. The Clinic wants me to get a bone density test. I went

to my Gastro yedterday and asked him about it... he said ...so what are

they going to do if they find your bones are thinning?.... I guess give

me bone transplants. You can only worry about thngs so much... till the

worrying becomes worse than the reality.

Most things are beyond our control. It may be too early yet but my

eyesight has been getting worse and my eyes water a lot... anybody else

have watery eyes?

Jerry >>

Yes, watery eyes, too, which I didn't have before. (I became ill only back

in May.) However, I have so little access to doctors' time that watery eyes

are way down on my list to ask about.

I'm enjoying life very, very much now (no depression, thank goodness), but I

don't feel particularly attached to it. Life just seems like a remarkable

molecular alignment that I had the good luck to take part in for a while. As

it happens, I'm probably going to make a good recovery that may last for

quite a while; I seem to respond well to basic treatment.

Harper/AIH/California

flatcat9@...

December 9, 2000

In a message dated 12/9/00 8:59:56 PM Pacific Standard Time, gefox@...

writes:

<< ... CCF stand for the Cleveland Clinic Foundation.... in Cleveland .

It`s one the worlds absolute best hospitals. All of Clevelands sports

teams use it. Every time I`ve been there I`ve seen rich Arabic

types,with bodyguards and all---mideasterners seem to use it a lot. The

Shah of Iran was treated there. They`ve done 800 or more liver

transplants since 1984 and thier one year success rate is now over 90%.

They got it going on... we have list member(s) here who recieved a live

donor transplant there this past year and they have a terrific story. It

is either #1 0r #2 == depending on who`s judging == in the nation as a

transplant center

jerry >>

Thanks, Jerry. My doctor thinks my liver will last a few years, but I want

to keep looking at my options in the meantime. I hope some technology makes

liver availability less of an issue by then. I'm 57 now, and I'm not sure

how I'll feel ethically about competing for a liver with a young person.

I'll deal with that issue when I come to it. Funny, I'd never even heard of

this disease until May. I've seen the gastro guy only three times, I think,

and not at all since I was diagnosed. Life changes fast. I was able to get

short-term disability status through April. After that, I'll have to decide

what to do about work.

Harper / AIH / California

December 9, 2000

Hi

I'm confused on that point as well.

Being on 150mg of Imuran and 5mg prednisone myself - I asked my GI if I

should/can have a flu shot and he said 'yes' as well.

Considering the medications lower the immune system and then injecting a

flu shot seems odd.

BUT - I think the difference is the 'shot' does NOT contain 'live' virus

that would 'take hold' and cause us to get the flu that we are trying to

prevent.

It's the same as the Polio serum many many years ago. There were

actually two different serums available to the doctors to use. My

childhood doctor chose the 'non live' serum to give me and my brothers.

He was strongly concerned about not giving 'live' serum because he

felt it would put a person at greater risk. Some other doctors did

chose to give the 'live' version of the serum.

I don't think I'll get the flu shot. I haven't for years and years.

The last one I got (and I think the first) was the 'swine flu' shot

given in the mid to late 70's. That one scared me - too many people got

sick and some died. So, I'll take my chances and just be super careful

around people.

Sue AIH

Colorado

boyds59@... wrote:

> Hi Everyone, hope your holidays were great! I haven't posted in about two

> weeks. I had so many posts I actually had to delete some because I couldn't

> read them all. I hate to do that, because I know I'm probably missing out on

> some great information and new members. Oh well, there's only so much time

> to spare.

>

> Has anyone gotten a flu shot this year? I thought if your immune system was

> down and you were on Imuran you couldn't have any vaccinations. My liver doc

> said I could one. They're usually recommended for small children, older

> folks and people with compromised immune systems. I'm really confused over

> this. What have you guys been told? And also, what about he dentist? I

> need to go, but I've heard I need to take antibiotics first.

>

> I hope you all are doing well. Continue to focus on being healthy. At this

> same time last year I was bed-ridden because I was so sick with AIH. This

> year I feel a lot better. I just pray that it lasts.

>

> Take care, from Louisiana AIH 99'

>

December 9, 2000

Hi :

I was told to check with my Transplant Coordinator before I go to the dentist to see if I should take an antibiotic.

Also, to tell my dentist to follow the latest guidelines from the American Heart Association and to call my Transplant Office if she/he has any questions.

I was informed that if I didn't get a flu shots before the transplant, then it is not necessary to get one now. However, your doctor(s) may have a different opinion because everybody's circumstances are different. I would follow your doctor's advice for this area of concern.

I will pray for you. I hope that you continue to feel better each and everyday.

Take care,

Tom

Re: [ ] Digest Number 1316

Hi Everyone, hope your holidays were great! I haven't posted in about two weeks. I had so many posts I actually had to delete some because I couldn't read them all. I hate to do that, because I know I'm probably missing out on some great information and new members. Oh well, there's only so much time to spare.Has anyone gotten a flu shot this year? I thought if your immune system was down and you were on Imuran you couldn't have any vaccinations. My liver doc said I could one. They're usually recommended for small children, older folks and people with compromised immune systems. I'm really confused over this. What have you guys been told? And also, what about he dentist? I need to go, but I've heard I need to take antibiotics first. I hope you all are doing well. Continue to focus on being healthy. At this same time last year I was bed-ridden because I was so sick with AIH. This year I feel a lot better. I just pray that it lasts.Take care, from Louisiana AIH 99'

December 9, 2000

Tom,..... I was transplanted at CCF 5 yrs. ago ... not only have I

got a flu shot every year but also pneumonia this year. The clinic

advises me to do this PRECISELY BECAUSE my immune system is weakened

from immunosuppressants . You are at a greater risk of catching the flu

or pneumonia ( which is why post-transplants take Bactrim--- an

antibiotic) The flu vaccine has dead micro-organisms - not live ones and

are not only advisible but perfectly safe for those on prednisone,

prograf, cyclosporine, etc. Not to 2nd guess your doctor but you would

be well advised as would everybody to get your flu shots. I think he or

she is doing you a disservice.I received my flu shot from my GP 2 mos.

ago while others had to wait as I was considered a high risk as both of

you are too. I urge you to get your shot. We`ve posted on

dentists and antibiotics numerous times. Genny is a dental assistant and

can tell you the reaons (infction-.heart problems) better than most,

but I think the general agreement here was antibiotics before procedure.

My dentist scripted set dosages and set times to take Ampycillin before

he would work on me. My various doctors have said the same.

Jerry

Hi :

I was told to check with my Transplant Coordinator before I go to the dentist to see if I should take an antibiotic.

Also, to tell my dentist to follow the latest guidelines from the American Heart Association and to call my Transplant Office if she/he has any questions.

I was informed that if I didn't get a flu shots before the transplant, then it is not necessary to get one now. However, your doctor(s) may have a different opinion because everybody's circumstances are different. I would follow your doctor's advice for this area of concern.

I will pray for you. I hope that you continue to feel better each and everyday.

Take care,

Tom

Re: [ ] Digest Number 1316

Hi Everyone, hope your holidays were great! I haven't posted in about two weeks. I had so many posts I actually had to delete some because I couldn't read them all. I hate to do that, because I know I'm probably missing out on some great information and new members. Oh well, there's only so much time to spare.Has anyone gotten a flu shot this year? I thought if your immune system was down and you were on Imuran you couldn't have any vaccinations. My liver doc said I could one. They're usually recommended for small children, older folks and people with compromised immune systems. I'm really confused over this. What have you guys been told? And also, what about he dentist? I need to go, but I've heard I need to take antibiotics first. I hope you all are doing well. Continue to focus on being healthy. At this same time last year I was bed-ridden because I was so sick with AIH. This year I feel a lot better. I just pray that it lasts.Take care, from Louisiana AIH 99'

December 9, 2000

Sue.... just to reitterate my previous post (I`m going thru these things

bakwards I guess)....... Those who take immunosupressants are at a far

greater risk of getting the flu virus than normal people and should by

all means get a flu shot .... one will find that he/she has priority

status and probably not have to wait to get one. The flu vaccine is made

of dead virus not live and poses no threat to those who receive a shot.

jerry

December 9, 2000

It is very important to not even be in the same room as someone who has

had a " live " polio shot, nor should you be near any one exposed to or

having chicken pox,measles.. as these deseases could be deadly to

someone on immunos. Note that it is not those who have AIH that are at

risk but ANYONE on high doses of immunosuppressants. For a time after

transplant I took Bactrim and Acyclovir as prophylaxses toward these

possibilities. That`s why one should also get his flu shot.. a

pneumonia shot is a very good idea also. Tyelenol can be very hard on

those with liver disease and should be avoided as much as possible

My gp was VERY insistent on my having the shot. I was a bit reluctant, as

the waiting room seemed to be full of people in much worse shape than me --

and the HMO had only five shots total that day. My point is that she, at

least, believes it to be extremely important for AIH people to have.

Our options are so few when we do get sick. I had a cold this summer, and I

felt more ill than I would have imagined possible. It took me a month to

recover. Think carefully before turning down a flu shot if you can get one.

(Are any of you able to take Tylenol, etc? )

Also, I'm sure you've all been warned to stay away from anyone who's had a

live vaccine, as for polio, measles, or chickenpox.

December 9, 2000

Flatcat9..... you are doing just fine as far as I`m concerned.... That`s