Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hello Jan; Welcome to the group! We are sorry that your recent UC and PSC diagnosis brings you here, but we are glad that you found us. Thanks for sharing your story; not a very pleasant holiday season for you! We look forward to getting to know more about you in the future. I think we are a friendly bunch, and we would be glad to help answer any of your questions, or just listen. Sometimes it helps to talk about it and know that you have someone who understands (or who " gets it " ) listen. Has your doctor put you any medication for the itching, PSC and ulcerative colitis? My son takes asacol for UC, ursodiol for PSC and rifampin for controlling the itching (pruritus). Others use alternative medications for itching. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) > > Hi. My name is Jan and I was just diagnosed with UC on 12/22/04 and PSC on 1/6/05. I turned 33yrs old on 1/8/05. I am married and have 3 kids: 2 boys (ages 7 1/2 and 6 1/2 years old) and a daughter that just turned 3. I had been itching since last winter, but did not go in for it until the week of Thanksgiving '04. If any one has any helpful advice that would be great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Jan, Welcome aboard. You'd fit right in at our house... my daughter turned 12 on the 8th and I turned 37 on the 5th. There are several of us here that itch badly, so if you find anything that works for you, we'd appreciate knowing about it! As for me... ice packs and a low fat diet have helped as much as anything. Regards, Bill Wise PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Right now the only medicine I'm on is Cholestyramine. I believe my doctor will precribe more medicine when I go in on the 19th. but what medicines i'm not sure. > > > > Hi. My name is Jan and I was just diagnosed with UC on 12/22/04 > and PSC on 1/6/05. I turned 33yrs old on 1/8/05. I am married and > have 3 kids: 2 boys (ages 7 1/2 and 6 1/2 years old) and a daughter > that just turned 3. I had been itching since last winter, but did > not go in for it until the week of Thanksgiving '04. If any one has > any helpful advice that would be great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Welcome Jan, I'm so sorry for your diagnosis and as my son [22] was just diagnosed in June I know how you must be feeling. It might be hard to believe right now, but things do get better. I know that others here have the itching as well and I'm sure that they will give you some advice. When you are ready check out the information on our upcoming conference in April. It is for care givers and patients and you might want to look at the agenda to see if you are interested. Feel free to ask questions and someone will answer you. I saw on here not too long ago that some people found medications helped the itching, some said that icing before bed helped and I saw one that said heat from a hair dryer helped. My best to you Lee here is the site about the conference and links you might be interested in. > http://www.psc-literature.org/Conf2005.htm > > > Hi. My name is Jan and I was just diagnosed with UC on 12/22/04 and > PSC on 1/6/05. I turned 33yrs old on 1/8/05. I am married and have > 3 kids: 2 boys (ages 7 1/2 and 6 1/2 years old) and a daughter that > just turned 3. I had been itching since last winter, but did not go > in for it until the week of Thanksgiving '04. If any one has any > helpful advice that would be great. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Thanks, The only thing that has helped the itching is Cholestramine powder. I take 4 scoops a day mixed with apple juice. I also take oatmeal baths and use udder cream. I think that medicine has worked more than anything. Jan > > Jan, > > Welcome aboard. You'd fit right in at our house... my daughter turned > 12 on the 8th and I turned 37 on the 5th. There are several of us > here that itch badly, so if you find anything that works for you, we'd > appreciate knowing about it! As for me... ice packs and a low fat > diet have helped as much as anything. > > Regards, > > Bill Wise > > PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Jan, Glad the Cholestyramine has worked for you. I take it as well as hydroxyzine and benadryl (as needed) with marginal benefit. Others here have tried rifampin also with some success. Anyway, glad the Questran works for you. The itching can be brutal. Your doc will probably also put you on a drug called Urso. It's not for itching, but a bile thinner that is the " stock " treatment for PSC. Let us know what the dosage is when he does. Best, Bill Wise PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hello JAN and welcome. Good news. there is much that can be done to manage UC. Sorry to hear you have had such a sudden promotion to this group, but glad you found us. Remember you have time to learn. & adjust, neither of these dis eases move very fast. Best Your Southern Illinois Neighbor jd, 44 UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04 ston City IL krmpotich@... I've been fortunate in that my wife > and three kids (12, 7, and 20 mo.) have jumped on the " healthier > lifestyle " bandwagon with me, and it has rewarded us with more energy > and lower weight for my wife and I. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 I've been talking a drug called Danazol for my itching & it has been a miracle for me. I used scratch my skin so hard I would cut myself. My doctor said I was one of the first people he saw it work on. I found it online about four years ago. A person was using it for pruritus due to chemo treatments. I asked if I could try it for my itching. It took about 7 too 14 days to start working. It brought my itching down(on a scale of 1-10) from a 9 to a 2. Hope this helps & Good Luck!!! Steve psc 2/92 uc 11/93 > > Hi. My name is Jan and I was just diagnosed with UC on 12/22/04 and > PSC on 1/6/05. I turned 33yrs old on 1/8/05. I am married and have > 3 kids: 2 boys (ages 7 1/2 and 6 1/2 years old) and a daughter that > just turned 3. I had been itching since last winter, but did not go > in for it until the week of Thanksgiving '04. If any one has any > helpful advice that would be great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Hello ; I would never have guessed that this drug would have been so useful for controlling your itching. I don't know of anyone in the group who is taking this medication. Several take rifampin, questran, or naltrexone. But if Danazol works for you, that's great. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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