Re: Update on an old member: Sue, about Immuran

[Guest guest]

Debby,

Thanks that helps a lot. Wow, you have trouble with meds, huh?

That has to be so frustrating having to keep trying different ones.

I am so glad to hear you are feeling better though. I hope it's just

medicine. The pain when it radiates to my back is so hard, I can't

sleep or anything. Now I am also getting extreme itching again, so

between the itching and pain, I am not sleeping much. You started

back on 6MP last Friday and you are already seeing a difference,

that's fast results, wonderful!!

Thanks for the great feedback.

Love,

Ruth

> > > Hi all

> > >

> > > Well, I haven't written in over a year to this group. Many

new

> > names

> > > now abound!

> > >

> > > So, why haven't I kept up? Busy, working, trying to get into

> > remission.

> > >

> > > I have been on prednisone since Dec 98. Levels anywhere from

40

> to

> > > 7.5mg. Imuran turned out to be a nightmare for me. We went

to

> > 250mg

> > > and found out that it was very toxic to me. Toxic levels are

> > anything

> > > over 5,700 - I was at over 26,000. Beneficial levels needed

to

> be

> > at

> > > 250 - I could only get to 123.

> > >

> > > That was last month. It's been very nice to be off Imuran.

I was

> > > nauseous, tired, etc. at the 250mg level.

> > >

> > > So that leaves me on prednisone...... still. Now, because of

the

> > > complications I with prednisone (diabetes, osteoporosis,

acne)

> that

> > dr

> > > want to take me off the stuff if I can't get into remission

asap.

> > >

> > > Which leaves me with not much of a choice. He did mention

another

> > > steroid to try - it's NOT indicated for AIH - but he figures

it

> > might

> > > work - it's that or liver transplant. ENTOCORTT EC

(budesonide)

> > > (Capsules is used to treat mild to moderate active Crohn's

> > disease). I

> > > don't have Crohn's disease.

> > >

> > > Has anyone tried this steroid?????

> > >

> > > Scares me to death, coming to this 'fork in the road'.

> > >

> > > Okay - so if that's not enough - I am being laid off. As of

June

> > 14 -

> > > I'm not employed. I am hoping like crazy that I get on my

> husband's

> > > insurance with no problems.

> > >

> > > More later..

> > >

> > > Colorado Sue AIH 12/98

>

>

>

[Guest guest]

Debby,

Thanks that helps a lot. Wow, you have trouble with meds, huh?

That has to be so frustrating having to keep trying different ones.

I am so glad to hear you are feeling better though. I hope it's just

medicine. The pain when it radiates to my back is so hard, I can't

sleep or anything. Now I am also getting extreme itching again, so

between the itching and pain, I am not sleeping much. You started

back on 6MP last Friday and you are already seeing a difference,

that's fast results, wonderful!!

Thanks for the great feedback.

Love,

Ruth

> > > Hi all

> > >

> > > Well, I haven't written in over a year to this group. Many

new

> > names

> > > now abound!

> > >

> > > So, why haven't I kept up? Busy, working, trying to get into

> > remission.

> > >

> > > I have been on prednisone since Dec 98. Levels anywhere from

40

> to

> > > 7.5mg. Imuran turned out to be a nightmare for me. We went

to

> > 250mg

> > > and found out that it was very toxic to me. Toxic levels are

> > anything

> > > over 5,700 - I was at over 26,000. Beneficial levels needed

to

> be

> > at

> > > 250 - I could only get to 123.

> > >

> > > That was last month. It's been very nice to be off Imuran.

I was

> > > nauseous, tired, etc. at the 250mg level.

> > >

> > > So that leaves me on prednisone...... still. Now, because of

the

> > > complications I with prednisone (diabetes, osteoporosis,

acne)

> that

> > dr

> > > want to take me off the stuff if I can't get into remission

asap.

> > >

> > > Which leaves me with not much of a choice. He did mention

another

> > > steroid to try - it's NOT indicated for AIH - but he figures

it

> > might

> > > work - it's that or liver transplant. ENTOCORTT EC

(budesonide)

> > > (Capsules is used to treat mild to moderate active Crohn's

> > disease). I

> > > don't have Crohn's disease.

> > >

> > > Has anyone tried this steroid?????

> > >

> > > Scares me to death, coming to this 'fork in the road'.

> > >

> > > Okay - so if that's not enough - I am being laid off. As of

June

> > 14 -

> > > I'm not employed. I am hoping like crazy that I get on my

> husband's

> > > insurance with no problems.

> > >

> > > More later..

> > >

> > > Colorado Sue AIH 12/98

>

>

>

[Guest guest]

Ruth, aactually, I started taking the 6MP on Thursday evening. Yes, I am hoping that I am not imagining things, but so far, so good....however, I thought the same for the Cellcept too. But for now, I am going to think good things! I was not sick before, and am hoping that it will continue!

debby

[ ] Re: Update on an old member: Sue, about Immuran

Debby, Thanks that helps a lot. Wow, you have trouble with meds, huh? That has to be so frustrating having to keep trying different ones. I am so glad to hear you are feeling better though. I hope it's just medicine. The pain when it radiates to my back is so hard, I can't sleep or anything. Now I am also getting extreme itching again, so between the itching and pain, I am not sleeping much. You started back on 6MP last Friday and you are already seeing a difference, that's fast results, wonderful!!Thanks for the great feedback.Love,Ruth> > > Hi all> > > > > > Well, I haven't written in over a year to this group. Many new > > names> > > now abound!> > > > > > So, why haven't I kept up? Busy, working, trying to get into > > remission.> > > > > > I have been on prednisone since Dec 98. Levels anywhere from 40 > to> > > 7.5mg. Imuran turned out to be a nightmare for me. We went to > > 250mg> > > and found out that it was very toxic to me. Toxic levels are > > anything> > > over 5,700 - I was at over 26,000. Beneficial levels needed to > be > > at> > > 250 - I could only get to 123.> > > > > > That was last month. It's been very nice to be off Imuran. I was> > > nauseous, tired, etc. at the 250mg level.> > > > > > So that leaves me on prednisone...... still. Now, because of the> > > complications I with prednisone (diabetes, osteoporosis, acne) > that > > dr> > > want to take me off the stuff if I can't get into remission asap.> > > > > > Which leaves me with not much of a choice. He did mention another> > > steroid to try - it's NOT indicated for AIH - but he figures it > > might> > > work - it's that or liver transplant. ENTOCORTT EC (budesonide)> > > (Capsules is used to treat mild to moderate active Crohn's > > disease). I> > > don't have Crohn's disease.> > > > > > Has anyone tried this steroid?????> > > > > > Scares me to death, coming to this 'fork in the road'.> > > > > > Okay - so if that's not enough - I am being laid off. As of June > > 14 -> > > I'm not employed. I am hoping like crazy that I get on my > husband's> > > insurance with no problems.> > > > > > More later..> > > > > > Colorado Sue AIH 12/98> > >

[Guest guest]

Dear Sue,

Sorry to hear about the immuran...... I know it must just be so frustrating to you... and those fires...... hope it will be contained soon.

Cheryl & Randy

[Guest guest]

Hi Ruth

I didn't have pain while taking Imuran - but I certainly was sick (at

to 200-250mg level). Nausea, confusion, etc. My dosage (through

the course of time) reached 250mg because we were not getting the results

we were looking for (reduction in my LFT's and removal of prednisone).

So the doctor did a couple of metabolizing studies that show how the drug

is being broken down by the liver. That is where I learned about

the good and bad side of Imuran. According to this study - therapeutic

levels (the good side) are 250 and above while toxic levels (the bad side)

are 5,700 and above. Even at 250mg daily of Imuran, I could only

reach 123 of the therapeutic side - but the toxic side went to over 26,000.

I was taken off Imuran immediately and am being tested for liver damage.

I don't think there is any damage - but I wouldn't want to go through THAT

again!.

So that leaves me still on prednisone. He mentioned another drug

that we may try. I'll know more later this month.

Hope this helps.

Sue, Colorado AIH 12/98

(30 miles away from the Hayman fire!)

hrby97111 wrote:

Sue,

My doctor seems to think the pain I am having, and nausea

is from

the immuran. Did you have pain while you were on it?

I think the

pain is from something else. It starts at RUQ and below right

and

radiates to my back, the only thing that helps is the oxycodone

the

ER doctor gave me. The doctor was upset because the ER doctor

and my

primary along with a couple other HMO providers decided I needed

a

catscan to check out the pain I have been complaining about, with

the

fevers. So he upped my immuran to 100 mg, from 50 mg., his

theory is

if I feel worse on the change in dosage it proves it is the immuran.

I hate to say this but I think it is his ego that is hurting his

judgement. I also have had a lot of edema in my feet and

legs, when

I have the edema, my blood pressure goes up. I had the catscan

today, sure was kind people who ran the tests and checked me in.

I

asked the doctor, who is the gastro that is leaving for California

and will no longer be my doctor if I should have a diaruetic, he

said

no because he didn't want to give me medicine to counteract a side-

effect problem caused by the immuran or predisone. I just

thought

you or anyone else could tell me their experiences with immuran.

Isn't cellcept another one they give for people who can't take

immuran, or maybe I am getting that mixed up with another one.

Everything is still new to me. Thanks for your input Sue.

Ruth

> > Hi all

> >

> > Well, I haven't written in over a year to this group.

Many new

> names

> > now abound!

> >

> > So, why haven't I kept up? Busy, working, trying to get

into

> remission.

> >

> > I have been on prednisone since Dec 98. Levels anywhere

from 40

to

> > 7.5mg. Imuran turned out to be a nightmare for me.

We went to

> 250mg

> > and found out that it was very toxic to me. Toxic levels

are

> anything

> > over 5,700 - I was at over 26,000. Beneficial levels

needed to

be

> at

> > 250 - I could only get to 123.

> >

> > That was last month. It's been very nice to be off Imuran.

I was

> > nauseous, tired, etc. at the 250mg level.

> >

> > So that leaves me on prednisone...... still. Now, because

of the

> > complications I with prednisone (diabetes, osteoporosis, acne)

that

> dr

> > want to take me off the stuff if I can't get into remission

asap.

> >

> > Which leaves me with not much of a choice. He did mention

another

> > steroid to try - it's NOT indicated for AIH - but he figures

it

> might

> > work - it's that or liver transplant. ENTOCORT™ EC (budesonide)

> > (Capsules is used to treat mild to moderate active Crohn's

> disease). I

> > don't have Crohn's disease.

> >

> > Has anyone tried this steroid?????

> >

> > Scares me to death, coming to this 'fork in the road'.

> >

> > Okay - so if that's not enough - I am being laid off.

As of June

> 14 -

> > I'm not employed. I am hoping like crazy that I get on

my

husband's

> > insurance with no problems.

> >

> > More later..

> >

> > Colorado Sue AIH 12/98

[Guest guest]

Dear Sue,

Thanks for the info on immuran. That's scary, I hope you don't

have liver damage from it. You are that close to the wildfire? I

will be praying for you. I have been praying for Colorado as I hear

about it on the news. Colorado is such a beautiful state, I am so

sorry you are having this awful fire, and so early in the season.

Love,

Ruth

> > > > Hi all

> > > >

> > > > Well, I haven't written in over a year to this group. Many

new

> > > names

> > > > now abound!

> > > >

> > > > So, why haven't I kept up? Busy, working, trying to get into

> > > remission.

> > > >

> > > > I have been on prednisone since Dec 98. Levels anywhere from

40

> > to

> > > > 7.5mg. Imuran turned out to be a nightmare for me. We went

to

> > > 250mg

> > > > and found out that it was very toxic to me. Toxic levels are

> > > anything

> > > > over 5,700 - I was at over 26,000. Beneficial levels needed

to

> > be

> > > at

> > > > 250 - I could only get to 123.

> > > >

> > > > That was last month. It's been very nice to be off Imuran.

I was

> >

> > > > nauseous, tired, etc. at the 250mg level.

> > > >

> > > > So that leaves me on prednisone...... still. Now, because of

the

> > > > complications I with prednisone (diabetes, osteoporosis, acne)

> > that

> > > dr

> > > > want to take me off the stuff if I can't get into remission

asap.

> > > >

> > > > Which leaves me with not much of a choice. He did mention

another

> >

> > > > steroid to try - it's NOT indicated for AIH - but he figures

it

> > > might

> > > > work - it's that or liver transplant. ENTOCORT™ EC

(budesonide)

> > > > (Capsules is used to treat mild to moderate active Crohn's

> > > disease). I

> > > > don't have Crohn's disease.

> > > >

> > > > Has anyone tried this steroid?????

> > > >

> > > > Scares me to death, coming to this 'fork in the road'.

> > > >

> > > > Okay - so if that's not enough - I am being laid off. As of

June

> > > 14 -

> > > > I'm not employed. I am hoping like crazy that I get on my

> > husband's

> > > > insurance with no problems.

> > > >

> > > > More later..

> > > >

> > > > Colorado Sue AIH 12/98

> >

> >

> >

[Guest guest]

Hi Ruth, Cheryl & Randy

I think I'm fine - no liver damage. But the doctor is watching

carefully. He was smart enough to see how well the Imuran was working

- I'm glad for that.

The fires are about 30 miles south and east of us. We live on

the south west outskirts of Denver in the foothills. Smoke in the

air is pretty heavy at times. It's heading in our direction - but

I really don't think we will have to evacuate. I believe the firefighters

will be able to get a handle on it. I'm not too worried - but I do

keep close watch on the news. They will do a reverse 911 to areas

that need to leave - or have police/sheriffs knock on your door.

I'm praying as well - especially those people who are homeless now,

and the evacuated ones.

Sue AIH 12/98

Smoky Colorado

hrby97111 wrote:

Dear Sue,

Thanks for the info on immuran. That's scary,

I hope you don't

have liver damage from it. You are that close to the wildfire?

I

will be praying for you. I have been praying for Colorado

as I hear

about it on the news. Colorado is such a beautiful state,

I am so

sorry you are having this awful fire, and so early in the season.

Love,

Ruth

> > > > Hi all

> > > >

> > > > Well, I haven't written in over a year to this group.

Many

new

> > > names

> > > > now abound!

> > > >

> > > > So, why haven't I kept up? Busy, working, trying

to get into

> > > remission.

> > > >

> > > > I have been on prednisone since Dec 98. Levels anywhere

from

40

> > to

> > > > 7.5mg. Imuran turned out to be a nightmare for me.

We went

to

> > > 250mg

> > > > and found out that it was very toxic to me. Toxic

levels are

> > > anything

> > > > over 5,700 - I was at over 26,000. Beneficial levels

needed

to

> > be

> > > at

> > > > 250 - I could only get to 123.

> > > >

> > > > That was last month. It's been very nice to be off

Imuran.

I was

> >

> > > > nauseous, tired, etc. at the 250mg level.

> > > >

> > > > So that leaves me on prednisone...... still. Now,

because of

the

> > > > complications I with prednisone (diabetes, osteoporosis,

acne)

> > that

> > > dr

> > > > want to take me off the stuff if I can't get into remission

asap.

> > > >

> > > > Which leaves me with not much of a choice. He did

mention

another

> >

> > > > steroid to try - it's NOT indicated for AIH - but he figures

it

> > > might

> > > > work - it's that or liver transplant. ENTOCORT™ EC

(budesonide)

> > > > (Capsules is used to treat mild to moderate active Crohn's

> > > disease). I

> > > > don't have Crohn's disease.

> > > >

> > > > Has anyone tried this steroid?????

> > > >

> > > > Scares me to death, coming to this 'fork in the road'.

> > > >

> > > > Okay - so if that's not enough - I am being laid off.

As of

June

> > > 14 -

> > > > I'm not employed. I am hoping like crazy that I get

on my

> > husband's

> > > > insurance with no problems.

> > > >

> > > > More later..

> > > >

> > > > Colorado Sue AIH 12/98

> >

> >

> >

[Guest guest]

Hi Sue I am pleased to hear that there is no liver damage done your doctor sounds very good. I was so sorry to hear about the fire I am afraid it was the first I had heard about it here it must be scary and I feel for the wildlife. Do they know what started it. Jeanette UK AIH dx 1998 Cirrhosis dx 2001 Sue Irons <sue@...> wrote: Hi Ruth, Cheryl & Randy I think I'm fine - no liver damage. But the doctor is watching carefully. He was smart enough to see how well the Imuran was working - I'm glad for that. The fires are about 30 miles south and east of us. We live on the south west outskirts of Denver in the foothills. Smoke in the air is pretty heavy at times. It's heading in our direction - but I really don't think we will have to evacuate. I believe the firefighters will be able to get a handle on it. I'm not too worried - but I do keep close watch on the news. They will do a reverse 911 to areas that need to leave - or have police/sheriffs knock on your door. I'm praying as well - especially those people who are homeless now, and the evacuated ones. Sue AIH 12/98 Smoky Colorado hrby97111 wrote: Dear Sue, Thanks for the info on immuran. That's scary, I hope you don't have liver damage from it. You are that close to the wildfire? I will be praying for you. I have been praying for Colorado as I hear about it on the news. Colorado is such a beautiful state, I am so sorry you are having this awful fire, and so early in the season. Love, Ruth > > > > Hi all > > > > > > > > Well, I haven't written in over a year to this group. Many new > > > names > > > > now abound! > > > > > > > > So, why haven't I kept up? Busy, working, trying to get into > > > remission. > > > > > > > > I have been on prednisone since Dec 98. Levels anywhere from 40 > > to > > > > 7.5mg. Imuran turned out to be a nightmare for me. We went to > > > 250mg > > > > and found out that it was very toxic to me. Toxic levels are > > > anything > > > > over 5,700 - I was at over 26,000. Beneficial levels needed to > > be > > > at > > > > 250 - I could only get to 123. > > > > > > > > That was last month. It's been very nice to be off Imuran. I was > > > > > > nauseous, tired, etc. at the 250mg level. > > > > > > > > So that leaves me on prednisone...... still. Now, because of the > > > > complications I with prednisone (diabetes, osteoporosis, acne) > > that > > > dr > > > > want to take me off the stuff if I can't get into remission asap. > > > > > > > > Which leaves me with not much of a choice. He did mention another > > > > > > steroid to try - it's NOT indicated for AIH - but he figures it > > > might > > > > work - it's that or liver transplant. ENTOCORT™ EC (budesonide) > > > > (Capsules is used to treat mild to moderate active Crohn's > > > disease). I > > > > don't have Crohn's disease. > > > > > > > > Has anyone tried this steroid????? > > > > > > > > Scares me to death, coming to this 'fork in the road'. > > > > > > > > Okay - so if that's not enough - I am being laid off. As of June > > > 14 - > > > > I'm not employed. I am hoping like crazy that I get on my > > husband's > > > > insurance with no problems. > > > > > > > > More later.. > > > > > > > > Colorado Sue AIH 12/98 > > > > > >