Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 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) Quote Link to comment Share on other sites More sharing options...
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