Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 HI Bob Welcome to our group. I am sorry I am unable to help with the itching, but I am sure you will get lots of advise from others. Near the top of the postings page there is a search box for this discussion group, you may wish to use this to see previous postings on itching. You have been diagnosed with PSC for quite a while, I know that those newly diagnosed with PSC can get into quite a panic as a lot of the information (outdated) says that the usual length of time from diagnosis to a liver transplant is 7 to 10 years. So its great that apart from the itching (which must be so awful) you are doing well. Best wishes from the bottom of the world in New Zealand. > > Hi, > > I am new to the group. I am 50 years old and have psc for 14 years now. The past year I have not stopped itching. It is worse at night. Does anyone have any success with any natural remedies, herbs or a special diet to stop the itching. I do not like to take the prescription drugs. > > Bob > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi , Thanks for the fast reply. My wife will be in Australia in a couple of hours. That is also towards the bottom. Do you have psc? Ifso, how long? bob To: Sent: Wednesday, February 4, 2009 10:28:51 PMSubject: Re: pruritis HI BobWelcome to our group. I am sorry I am unable to help with the itching, but I am sure you will get lots of advise from others. Near the top of the postings page there is a search box for this discussion group, you may wish to use this to see previous postings on itching. You have been diagnosed with PSC for quite a while, I know that those newly diagnosed with PSC can get into quite a panic as a lot of the information (outdated) says that the usual length of time from diagnosis to a liver transplant is 7 to 10 years. So its great that apart from the itching (which must be so awful) you are doing well.Best wishes from the bottom of the world in New Zealand.>> Hi, > > I am new to the group. I am 50 years old and have psc for 14 years now. The past year I have not stopped itching. It is worse at night. Does anyone have any success with any natural remedies, herbs or a special diet to stop the itching. I do not like to take the prescription drugs.> > Bob > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi , Thanks for the fast reply. My wife will be in Australia in a couple of hours. That is also towards the bottom. Do you have psc? Ifso, how long? bob To: Sent: Wednesday, February 4, 2009 10:28:51 PMSubject: Re: pruritis HI BobWelcome to our group. I am sorry I am unable to help with the itching, but I am sure you will get lots of advise from others. Near the top of the postings page there is a search box for this discussion group, you may wish to use this to see previous postings on itching. You have been diagnosed with PSC for quite a while, I know that those newly diagnosed with PSC can get into quite a panic as a lot of the information (outdated) says that the usual length of time from diagnosis to a liver transplant is 7 to 10 years. So its great that apart from the itching (which must be so awful) you are doing well.Best wishes from the bottom of the world in New Zealand.>> Hi, > > I am new to the group. I am 50 years old and have psc for 14 years now. The past year I have not stopped itching. It is worse at night. Does anyone have any success with any natural remedies, herbs or a special diet to stop the itching. I do not like to take the prescription drugs.> > Bob > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 I have been blessed not to have this problem, but I found /Wim's doctor's opinions to be quite interesting and a departure from what we usually hear in this forum regarding itching. Has anyone else been taking phenobarb? Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 I have been blessed not to have this problem, but I found /Wim's doctor's opinions to be quite interesting and a departure from what we usually hear in this forum regarding itching. Has anyone else been taking phenobarb? Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi , She went prepared for the heat wave. The problem is when she comes back to Israel and it will be freezing! How many people have told you about the tanning beds? I tried to access older replys to itching but did not understand how. I find for the tiredness it helps to take silyamarin (only from NOW vitamins) and a combination of ginseng koreani and ginseng siberi. How old are you? I had colitis from age 25 to 32 and then it went away thank God. My sister was just diagnosed last month with colitis. All the best, Bob Subject: Re: pruritisTo: Date: Wednesday, February 4, 2009, 9:58 PM Hi Bob,That was a fast response back too...grinIs your wife on holiday or business in Australia? At the moment all of Australia, even Tasmania, is in the grip of a heatwave, so she will be getting a very warm welcome. There are a few members of the group scattered in various parts of Australia.I was diagnosed 3 and a half years ago, it was quite a relief as my only symptom is fatigue, and now I know why I have always seemed to be permanently tired!! The specialist commented that he would not have been surprised if I had had PSC for 15 to 20 years, but we will never know. My older sister and younger brother both have colitis, but I don't. I am in awe of the members of this group who have so much information and support to help us get through.Again best wishes > Hi ,> > Thanks for the fast reply. My wife will be in Australia in a couple of hours. That is also towards the bottom. Do you have psc? Ifso, how long?> > bob> > Hi, > > > > I am new to the group. I am 50 years old and have psc for 14 years > now. The past year I have not stopped itching. It is worse at > night. > Does anyone have any success with any natural remedies, herbs or a > special diet to stop the itching. I do not like to take the > prescription drugs.> > > > Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi , She went prepared for the heat wave. The problem is when she comes back to Israel and it will be freezing! How many people have told you about the tanning beds? I tried to access older replys to itching but did not understand how. I find for the tiredness it helps to take silyamarin (only from NOW vitamins) and a combination of ginseng koreani and ginseng siberi. How old are you? I had colitis from age 25 to 32 and then it went away thank God. My sister was just diagnosed last month with colitis. All the best, Bob Subject: Re: pruritisTo: Date: Wednesday, February 4, 2009, 9:58 PM Hi Bob,That was a fast response back too...grinIs your wife on holiday or business in Australia? At the moment all of Australia, even Tasmania, is in the grip of a heatwave, so she will be getting a very warm welcome. There are a few members of the group scattered in various parts of Australia.I was diagnosed 3 and a half years ago, it was quite a relief as my only symptom is fatigue, and now I know why I have always seemed to be permanently tired!! The specialist commented that he would not have been surprised if I had had PSC for 15 to 20 years, but we will never know. My older sister and younger brother both have colitis, but I don't. I am in awe of the members of this group who have so much information and support to help us get through.Again best wishes > Hi ,> > Thanks for the fast reply. My wife will be in Australia in a couple of hours. That is also towards the bottom. Do you have psc? Ifso, how long?> > bob> > Hi, > > > > I am new to the group. I am 50 years old and have psc for 14 years > now. The past year I have not stopped itching. It is worse at > night. > Does anyone have any success with any natural remedies, herbs or a > special diet to stop the itching. I do not like to take the > prescription drugs.> > > > Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Hi once again Bob, Yes I find it hard using the search at yahoo groups as well. So I am attaching the messages in a couple of recent threads. I am 52 diagnosed when I was 33. Are you in Israel? We have several other members in Israel, most note worthy is Chaim Boermeester, he's a regular contributor but usually reads and answers post long after most of us on this side of the pond have gone to sleep. I live with my wife and four sons on the west coast of Canada. How many kids do you have? Ian (52) PSC 89 Hi , She went prepared for the heat wave. The problem is when she comes back to Israel and it will be freezing! How many people have told you about the tanning beds? I tried to access older replys to itching but did not understand how. I find for the tiredness it helps to take silyamarin (only from NOW vitamins) and a combination of ginseng koreani and ginseng siberi. How old are you? I had colitis from age 25 to 32 and then it went away thank God. My sister was just diagnosed last month with colitis. All the best, Bob Subject: Re: pruritisTo: Date: Wednesday, February 4, 2009, 9:58 PM Hi Bob,That was a fast response back too...grinIs your wife on holiday or business in Australia? At the moment all of Australia, even Tasmania, is in the grip of a heatwave, so she will be getting a very warm welcome. There are a few members of the group scattered in various parts of Australia.I was diagnosed 3 and a half years ago, it was quite a relief as my only symptom is fatigue, and now I know why I have always seemed to be permanently tired!! The specialist commented that he would not have been surprised if I had had PSC for 15 to 20 years, but we will never know. My older sister and younger brother both have colitis, but I don't. I am in awe of the members of this group who have so much information and support to help us get through.Again best wishes > Hi ,> > Thanks for the fast reply. My wife will be in Australia in a couple of hours. That is also towards the bottom. Do you have psc? Ifso, how long?> > bob> > Hi, > > > > I am new to the group. I am 50 years old and have psc for 14 years > now. The past year I have not stopped itching. It is worse at > night. > Does anyone have any success with any natural remedies, herbs or a > special diet to stop the itching. I do not like to take the > prescription drugs.> > > > Bob -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi there, I have been on Rifampin a couple of times, however I only took it when it seemed there were no other options left. It took about a week or so to take effect and once I started to feel better I went off of it. It's hard to explain but I just felt really blah on it. I constantly had a really funny taste in my mouth and it turned everything red. My energy seemed to be a bit worse during the day but the bonus was actually being able to sleep somewhat through the night. If you are going absolutely crazy to the point of insanity with the itch, I would recommend going on it as it did help alleviate the itch. I just couldn't stand to be on it for very long. Hopefully that helps. Alison > > -Alison, what side effects do you find with Rifampin? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi, What about Cholestymine...that's what my Doctor started me on today....I think it's were you are in your stage of PSC and other issues, like how one drug works with another, you (you body) the foods you eat ect.....Good luck! Don PS/UC 11-08 To: Sent: Thursday, February 5, 2009 9:19:51 PMSubject: Fwd: Re: pruritis >> -Alison, what side effects do you find with Rifampin?>--- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi, What about Cholestymine...that's what my Doctor started me on today....I think it's were you are in your stage of PSC and other issues, like how one drug works with another, you (you body) the foods you eat ect.....Good luck! Don PS/UC 11-08 To: Sent: Thursday, February 5, 2009 9:19:51 PMSubject: Fwd: Re: pruritis >> -Alison, what side effects do you find with Rifampin?>--- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Hi Alison, so sorry you had such a hard time with Rifampin. For me it's been like a miracle drug. I was scratching my skin open, not sleeping because of itching.... I was didn't like going out anywhere because I felt like people were staring at me because all I did was scratch and jump from the itching. After 2 weeks on Rifampin I felt so much better. I didn't notice any side effects aside from the really dark yellow urine. I've been on it for about a year now and my energy is so low and I feel ill a lot of the time... but I'm assuming it's just because the PSC is getting worse, I don't think it has anything to do with the Rifampin.... but it's so hard to tell what is doing what. For now I'm sticking with the Rifampin, I still itch at times, especially in the evenings, but it's manageable now. I no longer feel like jumping off of a bridge. Hope you find something that works for you. Karyn Quote Link to comment Share on other sites More sharing options...
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