Re: also new to group!!!

[Guest guest]

Welcome to the group Sharon!

Cheryl

[Guest guest]

Sharon,

Welcome... both to cyberspace and the support group!

You will find there are alot of people here to commiserate with as well as

share knowledge. Can't personally share Imuran info - I was never on it.

There is total agreement here the meds are worse than the disease. Your down

the road outlook could always be worse. AIH is rarely fatal, it's just the

learning to live with it! I want to say welcome and I'm sure you'll get some

imuran responses.

Patty

[ ] also new to group!!!

Hey Guys,

I'm Sharon,

Am not only new to the grp but brand new to using the internet as

well!!! My son , who's 19, just gave me a quick crash course

today before leaving to go back to college so I'm on my own w/this

computer!

I hardly have a clue about the internet, but do have some

experience w/AIH. Was dx'd w/AIH in Feb/01 after biopsy,

rollercoastered w/Prednisone for 1 1/2 yrs, & just recenty in Dec

faced up to this thing & began Imuran 4 wks ago. I had been avoiding

Imuran like the plague! Prednisone was hell & I'm still on a low dose

of it. Do you guys have to stay on it even w/Imuran? Imuran is

already killing me w/ nausea & other side effects.

What the meds have done to me are worse than the disease itself!!!

The meds for me are the hardest part, & I'm scared of what they will

end up doing down the road. I've always been real sensitive to any

antibiotics or other regular meds but I'm really scared of the

immuno-suppressants.

I live in upstate NY close to Saratoga, & just did a trip to

Columbia Univ Med Ctr in NYC this past wk to see a top liver

specialist. But the Imuran is all new & I'm still freaking out about

everything!

Any info & advise I can get along the way from you guys would be

great. Other than Drs, I haven't been able to talk to anyone who knew

anything about this -I've never known or met anyone w/AIH so you guys

will be a godsend!!!

Happy to have found you!!!

Sharon........

[Guest guest]

Sharon...welcome, swim on in.

Just quickly..... look at it this way... left untreated AIH kills 90% of

those with it in 10yrs. Prednisone and imuran will not.

Once you settle in on imuran they should

be able to wean you from the prednisone at least to a low maintenace

level. If you are absolutely unable to tolerate imura there are

alternatives. The other people here will tell you of thier expeiences

with the meds.....just remember all those who will write you are still

alive and some hee have had transplants (including myself....8 yrs. ago.

Bottom line don't allw yourself to be emotionally tied up with needless

fears or worries. With treatment you should live a normal life span.

Again we ar glad you are here.

jerry fox

[Guest guest]

Patty,

thank you for your welcome, I appreciate it !!!!

hope to talk more later,

Sharon

" J. " <scott_p@...> wrote:

Sharon,Welcome... both to cyberspace and the support group!You will find there are alot of people here to commiserate with as well asshare knowledge. Can't personally share Imuran info - I was never on it.There is total agreement here the meds are worse than the disease. Your downthe road outlook could always be worse. AIH is rarely fatal, it's just thelearning to live with it! I want to say welcome and I'm sure you'll get someimuran responses.Patty-----Original Message-----From: oceanseranade <oceanseranade@...>[mailto:oceanseranade@...]Sent: Saturday, January 18, 2003 4:34 PM Subject: [ ] also new to group!!!Hey Guys,I'm Sharon,Am not only new to the grp but brand new to using the internet aswell!!! My son , who's 19, just gave me a quick crash coursetoday before leaving to go back to college so I'm on my own w/thiscomputer! I hardly have a clue about the internet, but do have someexperience w/AIH. Was dx'd w/AIH in Feb/01 after biopsy,rollercoastered w/Prednisone for 1 1/2 yrs, & just recenty in Decfaced up to this thing & began Imuran 4 wks ago. I had been avoidingImuran like the plague! Prednisone was hell & I'm still on a low doseof it. Do you guys have to stay on it even w/Imuran? Imuran isalready killing me w/ nausea & other side effects.What the meds have done to me are worse than the disease itself!!!The meds for me are the hardest part, & I'm scared of what they willend up doing down the road. I've always been real sensitive to anyantibiotics or other regular meds but I'm really scared of theimmuno-suppressants. I live in upstate NY close to Saratoga, & just did a trip toColumbia Univ Med Ctr in NYC this past wk to see a top liverspecialist. But the Imuran is all new & I'm still freaking out abouteverything! Any info & advise I can get along the way from you guys would begreat. Other than Drs, I haven't been able to talk to anyone who knewanything about this -I've never known or met anyone w/AIH so you guyswill be a godsend!!! Happy to have found you!!! Sharon........

[Guest guest]

Jerry,

so glad to meet you & thanks for your msg.

You are already an inspiration to me!

I don' t think I could ever handle all that you must have been through-seriously!

I hope you're doing really well now!

Looking forward to talking w/you more later,

Sharon

gefox@... wrote:

Sharon...welcome, swim on in.Just quickly..... look at it this way... left untreated AIH kills 90% ofthose with it in 10yrs. Prednisone and imuran will not.Once you settle in on imuran they shouldbe able to wean you from the prednisone at least to a low maintenacelevel. If you are absolutely unable to tolerate imura there arealternatives. The other people here will tell you of thier expeienceswith the meds.....just remember all those who will write you are stillalive and some hee have had transplants (including myself....8 yrs. ago.Bottom line don't allw yourself to be emotionally tied up with needlessfears or worries. With treatment you should live a normal life span.Again we ar glad you are here. jerry fox

[Guest guest]

thank you Cheryl,

I appreciate your welcome!!!

Sharon

Homeykat@... wrote:

Welcome to the group Sharon!Cheryl

[Guest guest]

> Sharon...welcome, swim on in.

> Just quickly..... look at it this way... left untreated AIH kills

90% of

> those with it in 10yrs. Prednisone and imuran will not.

> Once you settle in on imuran they should

> be able to wean you from the prednisone at least to a low maintenace

> level. If you are absolutely unable to tolerate imura there are

> alternatives. The other people here will tell you of thier

expeiences

> with the meds.....just remember all those who will write you are

still

> alive and some hee have had transplants (including myself....8 yrs.

ago.

> Bottom line don't allw yourself to be emotionally tied up with

needless

> fears or worries. With treatment you should live a normal life span.

> Again we ar glad you are here.

>

> jerry fox

Hi-

I've never done e-mail group chats and all and wasn't sure on the

technicalities of entering in. I hope someone will read this and

return a response.

I was diagnosed with crohn's disease (irritable bowel disease of the

upper and lower, autoimmune as well)last spring- only found diagnosis

because of strong family disease that finally got diagnosed after

having been misdiagnosed with IBSyndrome 6 years ago. Suffered alot

of sickness from there to here. Interestingly enough, even 6 years

ago liver levels were elevated temporarily but it was blamed on

a " parasite " . It took from May to mid December and an acute hepatitis

(my numbers got up to 1400s at one point), a diagnosis of CMV wrongly

placed sent me to bed with no help but finally,(because I ended up in

the ER) I am in the Integris Liver Clinic in OKC and after a failed

ERCP that gave me pancreatitis and had TPN catheter for a week in the

hospital and now have the diagnosis #2- autoimmune hepatitis. Wanted

to know if anyone in your group also has the combo of crohn's disease

and AIH. I have a brother and sister with crohn's, the sister also

has hashimoto's thyroiditis (which our mother has- I have the gene

but hasn't kicked in yet) and another sister with rheumatoid

arthritis (currently on remicade) from my mother's side as well. My

father had colitis as did his mother- and a mysterious liver ailment

that was discovered on autopsy (not privy to the results- but the dr.

told Dad's wife to " tell his children " that his liver was completely

cirrotic). The point is we have strong autoimmune disease from both

gene pools. My Gastroenterologist I feel should have referred me

sooner to the liver clinic, but refused to believe I could have

something non-viral. Regardless, I have gone from 40 mg prednisone

and 50mg immuran starting DEC 27 (they delayed treatment due to the

pancreatitis) and am now (jan20) on 20pred and 25 imm.until next

month. My eyes went goofy on me this last week, now I am in glasses

for the first time- which has helped the headaches- but I am still

with a barely recovering state of acute hepatitis and having a lot of

liver pain.

The other big question I have for y'all- and I know that it is

different for all of us- is - are you able to work and do normal

things after treatment? I have been so sick for so long- I'm just 37

years old, and have 4 children- but I am mostly still in bed and have

had to be since early October.

I am not looking for false hope but reality- I deal better with

knowing the truth and facing it squarely.

Thanks-

Jean

[Guest guest]

In a message dated 1/20/03 3:00:17 PM Eastern Standard Time, jshaze5@... writes:

The other big question I have for y'all- and I know that it is

different for all of us- is - are you able to work and do normal

things after treatment? I have been so sick for so long- I'm just 37

years old, and have 4 children- but I am mostly still in bed and have

had to be since early October.

I am not looking for false hope but reality- I deal better with

knowing the truth and facing it squarely.

Welcome Jean.

I think that once your disease is in remission that you will be able to get out of bed and back to normal activity.

I have four kids also, how old are your kids?

Cheryl

[Guest guest]

Hi sharon, please dont be afraid. i was dx just before christmas, and it was a

shock. i spent ages trying to decide if to go on meds or not. because of my

family, who need me, i agreed to go on meds. i started on 30mgs prednisone, now

down to 10mgs maintainance dose. the side effects of the steroids soon wore off.

about 3 weeks or so ago i started on 150 mgs imuran i was very sick at first,

but my doc. gave me something to stop it. it worked. yes, i have put on

weight, but now its starting to come off again. believe me, if i can do it, so

can anyone.i have discovered that the reality isnt half as bad as i thought, and

i will hopefully live long enough to be a pain to my children.

love, hugs and prayers

anita (england)

>

> From: " hepcrohns <jshaze5@...> " <jshaze5@...>

> Date: Mon 20/Jan/2003 19:59 GMT

>

> Subject: [ ] Re: also new to group!!!

>

>

> > Sharon...welcome, swim on in.

> > Just quickly..... look at it this way... left untreated AIH kills

> 90% of

> > those with it in 10yrs. Prednisone and imuran will not.

> > Once you settle in on imuran they should

> > be able to wean you from the prednisone at least to a low maintenace

> > level. If you are absolutely unable to tolerate imura there are

> > alternatives. The other people here will tell you of thier

> expeiences

> > with the meds.....just remember all those who will write you are

> still

> > alive and some hee have had transplants (including myself....8 yrs.

> ago.

> > Bottom line don't allw yourself to be emotionally tied up with

> needless

> > fears or worries. With treatment you should live a normal life span.

> > Again we ar glad you are here.

> >

> > jerry fox

>

> Hi-

>

> I've never done e-mail group chats and all and wasn't sure on the

> technicalities of entering in. I hope someone will read this and

> return a response.

>

> I was diagnosed with crohn's disease (irritable bowel disease of the

> upper and lower, autoimmune as well)last spring- only found diagnosis

> because of strong family disease that finally got diagnosed after

> having been misdiagnosed with IBSyndrome 6 years ago. Suffered alot

> of sickness from there to here. Interestingly enough, even 6 years

> ago liver levels were elevated temporarily but it was blamed on

> a " parasite " . It took from May to mid December and an acute hepatitis

> (my numbers got up to 1400s at one point), a diagnosis of CMV wrongly

> placed sent me to bed with no help but finally,(because I ended up in

> the ER) I am in the Integris Liver Clinic in OKC and after a failed

> ERCP that gave me pancreatitis and had TPN catheter for a week in the

> hospital and now have the diagnosis #2- autoimmune hepatitis. Wanted

> to know if anyone in your group also has the combo of crohn's disease

> and AIH. I have a brother and sister with crohn's, the sister also

> has hashimoto's thyroiditis (which our mother has- I have the gene

> but hasn't kicked in yet) and another sister with rheumatoid

> arthritis (currently on remicade) from my mother's side as well. My

> father had colitis as did his mother- and a mysterious liver ailment

> that was discovered on autopsy (not privy to the results- but the dr.

> told Dad's wife to " tell his children " that his liver was completely

> cirrotic). The point is we have strong autoimmune disease from both

> gene pools. My Gastroenterologist I feel should have referred me

> sooner to the liver clinic, but refused to believe I could have

> something non-viral. Regardless, I have gone from 40 mg prednisone

> and 50mg immuran starting DEC 27 (they delayed treatment due to the

> pancreatitis) and am now (jan20) on 20pred and 25 imm.until next

> month. My eyes went goofy on me this last week, now I am in glasses

> for the first time- which has helped the headaches- but I am still

> with a barely recovering state of acute hepatitis and having a lot of

> liver pain.

>

> The other big question I have for y'all- and I know that it is

> different for all of us- is - are you able to work and do normal

> things after treatment? I have been so sick for so long- I'm just 37

> years old, and have 4 children- but I am mostly still in bed and have

> had to be since early October.

>

> I am not looking for false hope but reality- I deal better with

> knowing the truth and facing it squarely.

>

> Thanks-

>

> Jean

>

>

>

[Guest guest]

Hi Anita, so good to hear from you! It's hard to believe you just were dx b4 X-mas.

You sound so together about all of this & that's wonderful. Thank you for your kind words of encouragement!

Take care & be well,

Sharon

rainbow1953@... wrote:

Hi sharon, please dont be afraid. i was dx just before christmas, and it was a shock. i spent ages trying to decide if to go on meds or not. because of my family, who need me, i agreed to go on meds. i started on 30mgs prednisone, now down to 10mgs maintainance dose. the side effects of the steroids soon wore off. about 3 weeks or so ago i started on 150 mgs imuran i was very sick at first, but my doc. gave me something to stop it. it worked. yes, i have put on weight, but now its starting to come off again. believe me, if i can do it, so can anyone.i have discovered that the reality isnt half as bad as i thought, and i will hopefully live long enough to be a pain to my children.love, hugs and prayersanita (england)> > From: "hepcrohns <jshaze5@...>" <jshaze5@...>> Date: Mon 20/Jan/2003 19:59 GMT> > Subject: [ ] Re: also new to group!!!> > > > Sharon...welcome, swim on in.> > Just quickly..... look at it this way... left untreated AIH kills > 90% of> > those with it in 10yrs. Prednisone and imuran will not.> > Once you settle in on imuran they should> > be able to wean you from the prednisone at least to a low maintenace> > level. If you are absolutely unable to tolerate imura there are> > alternatives. The other people here will tell you of thier > expeiences> > with the meds.....just remember all those who will write you are > still> > alive and some hee have had transplants (including myself....8 yrs. > ago.> > Bottom line don't allw yourself to be emotionally tied up with > needless> > fears or worries. With treatment you should live a normal life span.> > Again we ar glad you are here. > > > > jerry fox> > Hi- > > I've never done e-mail group chats and all and wasn't sure on the > technicalities of entering in. I hope someone will read this and > return a response.> > I was diagnosed with crohn's disease (irritable bowel disease of the > upper and lower, autoimmune as well)last spring- only found diagnosis > because of strong family disease that finally got diagnosed after > having been misdiagnosed with IBSyndrome 6 years ago. Suffered alot > of sickness from there to here. Interestingly enough, even 6 years > ago liver levels were elevated temporarily but it was blamed on > a "parasite". It took from May to mid December and an acute hepatitis > (my numbers got up to 1400s at one point), a diagnosis of CMV wrongly > placed sent me to bed with no help but finally,(because I ended up in > the ER) I am in the Integris Liver Clinic in OKC and after a failed > ERCP that gave me pancreatitis and had TPN catheter for a week in the > hospital and now have the diagnosis #2- autoimmune hepatitis. Wanted > to know if anyone in your group also has the combo of crohn's disease > and AIH. I have a brother and sister with crohn's, the sister also > has hashimoto's thyroiditis (which our mother has- I have the gene > but hasn't kicked in yet) and another sister with rheumatoid > arthritis (currently on remicade) from my mother's side as well. My > father had colitis as did his mother- and a mysterious liver ailment > that was discovered on autopsy (not privy to the results- but the dr. > told Dad's wife to "tell his children" that his liver was completely > cirrotic). The point is we have strong autoimmune disease from both > gene pools. My Gastroenterologist I feel should have referred me > sooner to the liver clinic, but refused to believe I could have > something non-viral. Regardless, I have gone from 40 mg prednisone > and 50mg immuran starting DEC 27 (they delayed treatment due to the > pancreatitis) and am now (jan20) on 20pred and 25 imm.until next > month. My eyes went goofy on me this last week, now I am in glasses > for the first time- which has helped the headaches- but I am still > with a barely recovering state of acute hepatitis and having a lot of > liver pain.> > The other big question I have for y'all- and I know that it is > different for all of us- is - are you able to work and do normal > things after treatment? I have been so sick for so long- I'm just 37 > years old, and have 4 children- but I am mostly still in bed and have > had to be since early October. > > I am not looking for false hope but reality- I deal better with > knowing the truth and facing it squarely. > > Thanks-> > Jean> > >