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RE: Naltrexone

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Joanne,

I only took one pill out of my prescription bottle, but I remember that I did not like the way it made me feel, at all! Due to HE at the time, and all that's taken place since, I cannot tell you what I experienced I only remember that I refused to take more. As reluctant as I am to tell you this, I felt like I should share. However, remember that Todd may not have the same reaction I did - like Urso made my UC go ape and according to my doc that only happens in less than 1% of patients taking Urso.

I pray that Todd's itching subsides because I know that can be THE worst physical symptoms of liver disease.

Thinking of you and your family during this holiday season.

Blessings,

Naltrexone

Unfortunately Todd's itching is back in full force. His doctor has

prescribed Naltrexone to try, but I am a bit frightened about this

medication (as he is also) because of some of the withdrawal side

effects it can have. Todd had been on high levels of pain medication

for a long time both pre and post transplant and experienced horrific

withdrawal symptoms. He did get through it, but it was not pleasant.

When I told him that withdrawal symptoms could possibly be a side

effect, his first reaction was - then forget it, I'm not taking it! We

don't want to eliminate trying it, but I wanted to know if anyone who

has taken this drug has had any significant side effects?

Thanks so much for any insite on this.

Together in the fight, Whatever it takes!

Joanne (mom of Todd, 22, psc 01, crohns 02, tx twice 03, rPSC 05,

diabetes 06, AIH overlap 08, trying his best to live life to the

fullest in spite of all PSC obstacles)

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

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Joanne,

I only took one pill out of my prescription bottle, but I remember that I did not like the way it made me feel, at all! Due to HE at the time, and all that's taken place since, I cannot tell you what I experienced I only remember that I refused to take more. As reluctant as I am to tell you this, I felt like I should share. However, remember that Todd may not have the same reaction I did - like Urso made my UC go ape and according to my doc that only happens in less than 1% of patients taking Urso.

I pray that Todd's itching subsides because I know that can be THE worst physical symptoms of liver disease.

Thinking of you and your family during this holiday season.

Blessings,

Naltrexone

Unfortunately Todd's itching is back in full force. His doctor has

prescribed Naltrexone to try, but I am a bit frightened about this

medication (as he is also) because of some of the withdrawal side

effects it can have. Todd had been on high levels of pain medication

for a long time both pre and post transplant and experienced horrific

withdrawal symptoms. He did get through it, but it was not pleasant.

When I told him that withdrawal symptoms could possibly be a side

effect, his first reaction was - then forget it, I'm not taking it! We

don't want to eliminate trying it, but I wanted to know if anyone who

has taken this drug has had any significant side effects?

Thanks so much for any insite on this.

Together in the fight, Whatever it takes!

Joanne (mom of Todd, 22, psc 01, crohns 02, tx twice 03, rPSC 05,

diabetes 06, AIH overlap 08, trying his best to live life to the

fullest in spite of all PSC obstacles)

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

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Joanne,

I only took one pill out of my prescription bottle, but I remember that I did not like the way it made me feel, at all! Due to HE at the time, and all that's taken place since, I cannot tell you what I experienced I only remember that I refused to take more. As reluctant as I am to tell you this, I felt like I should share. However, remember that Todd may not have the same reaction I did - like Urso made my UC go ape and according to my doc that only happens in less than 1% of patients taking Urso.

I pray that Todd's itching subsides because I know that can be THE worst physical symptoms of liver disease.

Thinking of you and your family during this holiday season.

Blessings,

Naltrexone

Unfortunately Todd's itching is back in full force. His doctor has

prescribed Naltrexone to try, but I am a bit frightened about this

medication (as he is also) because of some of the withdrawal side

effects it can have. Todd had been on high levels of pain medication

for a long time both pre and post transplant and experienced horrific

withdrawal symptoms. He did get through it, but it was not pleasant.

When I told him that withdrawal symptoms could possibly be a side

effect, his first reaction was - then forget it, I'm not taking it! We

don't want to eliminate trying it, but I wanted to know if anyone who

has taken this drug has had any significant side effects?

Thanks so much for any insite on this.

Together in the fight, Whatever it takes!

Joanne (mom of Todd, 22, psc 01, crohns 02, tx twice 03, rPSC 05,

diabetes 06, AIH overlap 08, trying his best to live life to the

fullest in spite of all PSC obstacles)

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

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Hi, I've been on Natrexone for 3.6 years. I took it

for 3 years, went off it to go on Fentanol patch for 3

months....no withdrawl symptoms noticed....however I

did have withdrawl symptoms for the Fentanol patch,

but after 1 week off that, started back on Naltrexone.

Naltrexone is my friend. The only thing I feel is

slightly numbed skin, which is the effect we go for to

stop the itching.

Just a note though, while on Naltrexone, when i have

had cholangitis attacks and ended up in the ER, I do

tell them that I am on it, however, that has never

stopped them from giving me morphine for pain.

Cindy Baudoux-Northrup

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Hi, I've been on Natrexone for 3.6 years. I took it

for 3 years, went off it to go on Fentanol patch for 3

months....no withdrawl symptoms noticed....however I

did have withdrawl symptoms for the Fentanol patch,

but after 1 week off that, started back on Naltrexone.

Naltrexone is my friend. The only thing I feel is

slightly numbed skin, which is the effect we go for to

stop the itching.

Just a note though, while on Naltrexone, when i have

had cholangitis attacks and ended up in the ER, I do

tell them that I am on it, however, that has never

stopped them from giving me morphine for pain.

Cindy Baudoux-Northrup

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Naltrexone, just like any other med will, as she has

indicated, affect each person differently. If he has

to take it, he should experiment on a day he doesn't

have to leave home and is under some supervision for

any adverse reactions.

....and a side note....itching not only is the worse

physical day-to-day symptom of liver disease that I

have experienced, it is the worst mental symptom too.

it can drive you insane, render you a babling idiot

and make you use implements to relieve the itching

that you KNOW is going to hurt or bleed, but you do it

anyway because your only focus is to relieve the

itching....you worry about the pain, soreness or

bleeding later.

I can sit there at night, see a toe nail that probably

needs to be trimmed, and instead of using the

clippers, just try to tear the end off, and then I sit

there and watch it bleeding - thinking, gee, did I

really do that...that is going to hurt sooner or

later.

Cindy Baudoux-Northrup

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Naltrexone, just like any other med will, as she has

indicated, affect each person differently. If he has

to take it, he should experiment on a day he doesn't

have to leave home and is under some supervision for

any adverse reactions.

....and a side note....itching not only is the worse

physical day-to-day symptom of liver disease that I

have experienced, it is the worst mental symptom too.

it can drive you insane, render you a babling idiot

and make you use implements to relieve the itching

that you KNOW is going to hurt or bleed, but you do it

anyway because your only focus is to relieve the

itching....you worry about the pain, soreness or

bleeding later.

I can sit there at night, see a toe nail that probably

needs to be trimmed, and instead of using the

clippers, just try to tear the end off, and then I sit

there and watch it bleeding - thinking, gee, did I

really do that...that is going to hurt sooner or

later.

Cindy Baudoux-Northrup

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Naltrexone, just like any other med will, as she has

indicated, affect each person differently. If he has

to take it, he should experiment on a day he doesn't

have to leave home and is under some supervision for

any adverse reactions.

....and a side note....itching not only is the worse

physical day-to-day symptom of liver disease that I

have experienced, it is the worst mental symptom too.

it can drive you insane, render you a babling idiot

and make you use implements to relieve the itching

that you KNOW is going to hurt or bleed, but you do it

anyway because your only focus is to relieve the

itching....you worry about the pain, soreness or

bleeding later.

I can sit there at night, see a toe nail that probably

needs to be trimmed, and instead of using the

clippers, just try to tear the end off, and then I sit

there and watch it bleeding - thinking, gee, did I

really do that...that is going to hurt sooner or

later.

Cindy Baudoux-Northrup

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Cindy,

Very good point on all of it. When I said physical, I was thinking of how the HE affected me mentally, but you're right it wasn't any worse than thinking I was going to lose my mind while itching! It's just that the itching phases came and went and for quite some time before tx, the H.E. NEVER took a break. Ugh!

(MO)

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Cindy,

Very good point on all of it. When I said physical, I was thinking of how the HE affected me mentally, but you're right it wasn't any worse than thinking I was going to lose my mind while itching! It's just that the itching phases came and went and for quite some time before tx, the H.E. NEVER took a break. Ugh!

(MO)

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

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Cindy,

Very good point on all of it. When I said physical, I was thinking of how the HE affected me mentally, but you're right it wasn't any worse than thinking I was going to lose my mind while itching! It's just that the itching phases came and went and for quite some time before tx, the H.E. NEVER took a break. Ugh!

(MO)

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

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Thank you Cindy, , and Arild for sharing your experiences. We are just so torn as to what to do. Fortunately he is home for a month for break and if he does choose to start the medication he will be under my care so that I can watch carefully for side effects.

Itching is also Todd's worse physical and mental symptom of liver disease. It affects all aspects of his life when it is this severe. He also scatches until he is bleeding and in pain, but then just moves on to another part of his body. It is heartbreaking to watch and I feel for all of you that suffer from this awful symptom.

Joanne (mom of Todd, 22, psc 01, crohns 02, tx twice 03, and all the rest-but too tired to type it all)

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I had it for a few months but I didn't find it helped with my itching

at all. I take rifampicin every day and up and down my dose for

however bad the itching is. If you haven't tried Rifampicin I would

ask to try it as I have no side effects at all from it.

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I had it for a few months but I didn't find it helped with my itching

at all. I take rifampicin every day and up and down my dose for

however bad the itching is. If you haven't tried Rifampicin I would

ask to try it as I have no side effects at all from it.

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I had it for a few months but I didn't find it helped with my itching

at all. I take rifampicin every day and up and down my dose for

however bad the itching is. If you haven't tried Rifampicin I would

ask to try it as I have no side effects at all from it.

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Joanne,

Please keep us updated about Todd. The itching is truly torture,

and I hope that Todd can get some relief.

Ricky

PSC 2003

From:

[mailto: ] On Behalf

Of jgrieme@...

Sent: Saturday, December 20, 2008 3:19 PM

To:

Subject: Re: Naltrexone

Thank you Cindy, , and Arild for sharing your experiences. We

are just so torn as to what to do.

Joanne (mom of Todd, 22, psc 01, crohns 02, tx

twice 03, and all the rest-but too tired to type it all)

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