Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Friends~ Please help! Marco has been complaining a little bit of being itchy the past few weeks. It seemed to be relieved with lotion and I was really hoping it was due to dry skin and not PSC. Last night he woke me up at 3:00 am and said he couldn't sleep because he was so itchy. "It is driving me insane," he told me. Sound like the terrible itchiness I have heard of from some of the members of this group. I plan to talk to his Dr. tomorrow but does anyone have any ideas of things he could do/take to be comfortable today? Thank you. I am so sad. It is easy to be in denial about this darn disease when he has no symptoms...........but this is a reality check for me. I try to live in the present and not worry about the future but nights like last night make my worst fears jump to the forefront. Thanks for your help. Beth~Marco's Mom To visit your group on the web, go to:http://groups.yahoo.com/group// Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Dear , It sounds like your red bumps and violent itch are a different thing that the PSC itch. To know for sure you might want to run it by your doc. It's funny you should mention the itch in the winter thing though. Two or three years before I was dx with UC/PSC I always noticed that I itched significantly in the winter. I put it down to dry skin, the christmas tree(no joke), whatever. My skin does get dry in the winter as does most peoples. I now use this Aveeno or Eckard brand oatmeal bath oil when I get out of the bath. It helps alot. As you can see, we all have various itch remedies. I am like Deb, I can't stand anything but really soft sheets. You will also find that we all have different areas on our body that itch more than others. When I am working in the studio, I used to push my sleeves up to my elbows. Not any more because it drives me crazy with the itching. Sound neurotic? Oh well. Probably. only I know it helps not to do this and to wear short sleeves when I am working. As I said in an earlier email today I do take Rifampina and it really helps alot with only a little break through itching, usually in the evening. I am going to look at the fat thing in my food to see if this makes a difference. It is my understanding that the PSC itching is not an inflammatory thing so you won't see any redness or hives. Maybe you have two things going on simultaneously. Go luck with your surgery tomorrow. Ali Ali Lingerfelt-Tait alisoikias@... 411 charlotte st. asheville, N.C. 28801 828 253-8996 -Recycle yourself - become an organ and tissue donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Beth The itching maybe a sign of bile accumulation.....talk to his doctor......some medication may quickly ease the problem (worked for me)..... it usually occurs at night and particularly the feet and hands. And Yes.....it can cause great distress because scratching etc wont relieve it. Take care Re: Itching Friends~ Please help! Marco has been complaining a little bit of being itchy the past few weeks. It seemed to be relieved with lotion and I was really hoping it was due to dry skin and not PSC. Last night he woke me up at 3:00 am and said he couldn't sleep because he was so itchy. "It is driving me insane," he told me. Sound like the terrible itchiness I have heard of from some of the members of this group. I plan to talk to his Dr. tomorrow but does anyone have any ideas of things he could do/take to be comfortable today? Thank you. I am so sad. It is easy to be in denial about this darn disease when he has no symptoms...........but this is a reality check for me. I try to live in the present and not worry about the future but nights like last night make my worst fears jump to the forefront. Thanks for your help. Beth~Marco's Mom To visit your group on the web, go to:http://groups.yahoo.com/group// Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Beth, I'm one of those sufferers of extreme itching and I sympathize with Marco's situation. In the long term, Dave has made an excellent suggestion regarding rifampin. I have not been able to try it but many people both in this group and that I know offline have had good success with it. I've had minimal success with hydroxyzine (an industrial strength antihistamine) and better success with cholesteramine (a bile thinner). Discuss all those options with your doc. In the short term, I have the best luck with ice packs. I'd steer clear of general immersion in cool water (it feels good, but it further dries the skin), but make up some ice packs he can apply to the areas that itch the worst. It will help keep him sane until you can get some pharmacological relief. Best to you and Marco, Bill PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Dear Bill E., No, you're not imagining things AT ALL. I, too, have connected certain dietary habits to how much I itch - fats and citrus make me insane. My feet and back are often my worst spots, but my arms are also terrible. There are some at-home tricks that help - high thread count sheets or flannel sheets that are soft. I also try to make sure that my skin isn't touching other skin while I try to fall asleep - sweating makes it that much worse. I, too, have dry skin - have had all my life. I make sure that I put on lotion earlier in the day - not right before bed. With the approval of my heptologist (please get approval for yourself if you consider doing this), I take Benedryl at night to help me fall asleep. It helps knock me out so the itching lessens. Additionally, last week, I was prescribed Naltrexone. I haven't tried it, yet, because I was also prescribed lactulose. I only try one new drug at a time so that I can isolate the side effects, so Naltrexone will begin next week. Questran (generic name: cholestyramine) is usually the first line of defense for itching, but I'm not sure how it would interact with lactulose. It tends to cause constipation as it binds with the bile acids in your intestines. There is also the antibiotic Rifampin, but others will have to tell you about that one. My docs said it wasn't for me. I started a tiny amount of lactulose, and I'm working up. I believe I'm feeling the fog lift, too. I'll be taking 3 1/2 teaspoons tonight. (Being fearful, I started with just 1 1/2 even though the doctor said six.) I hope this helps. It isn't all in your head, and there are things that can help. Take care and congrats on getting the lactulose to help! Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, MELD 18 > > For others who feel the urge, where do you itch? > > Also, last night I splurged and ate hash and eggs for dinner. Later, > I itched like crazy. Do others find that dietary indulgences effect > your itching? Am I thinking too hard? > > Thanks again, > Bill E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Deb, Thanks for the quick response. It is wonderful to have others to talk to. I started out with 3 tsp of lactulose three times a day and moved up to 4 tsp 3 times a day. I mix it with sugar free lemonade or orange juice to cut it a bit. With your warning, I may try something else. After the initial " royal flush " the bathroom-related lifestyle impact has been minimal. I hope it helps you as much as it seems to have helped me. Concerning my mental issues- my work requires that I analyze complex cardiac hemodynamic graphs. I was a little slower and got tired quickly but could still do it. On the other hand, lists of data looked like a foreign language. I still prefer pictures to words (always have) but I am confident that the next time sends me out with a grocery list I won't dissapoint her. It's hard to draw a head of lettuce. Strange world, strange disease. I have told a few people about my PSC. You start listing the symptoms and most people get fatigue and bile backups but you start talking about taking laxitives so you can read lists and about itching and they look at you like you're making it up. No wonder diagnosis can be difficult. Thanks again and I hope you feel better, Bill " Deb " <delena1990@y...> wrote: > > Dear Bill E., > No, you're not imagining things AT ALL. I, too, have connected > certain dietary habits to how much I itch - >I was also prescribed lactulose. > and I'm working up. >I believe I'm feeling the fog lift, too. I'll be > taking 3 1/2 teaspoons tonight. (Being fearful, I started with just >1 1/2 even though the doctor said six.) > > I hope this helps. It isn't all in your head, and there are things > that can help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Dear Bill, There is one thing I have found that helps a little. I try to keep something in my stomach. I know that when I get hungry the itching seems to get worse. I have tried every medication you mentioned and you are right - they are marginal in the help they give. I have not tried the ice pack idea. I have enough of a problem keep warm as I have lost so much weight. Good luck in your battle with the PSC itch. Sincerely, Mr. Itch (Rob) ___________________________________________________________________ Speed up your surfing with Juno SpeedBand. Now includes pop-up blocker! Only $14.95/month -visit http://www.juno.com/surf to sign up today! Quote Link to comment Share on other sites More sharing options...
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