Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 In Sep 99, i was diagnosed with PSC but never suffered from any symptoms. I never took any prescribed meds because I didnt think it was necessary. On my B-day, I made a promise that I would start listening to the Drs. and take the Actigall 300mg...well, that didnt go to well, within 1 month I became extremely itchy. So i stopped, my next appt. I explained so they gave me Ursoforte, of course I waited a few months till the New Years to begin the next promise and lo and behold, the itching came back but this time i didnt stop. They gave me HYDROXYZINE and Questran to help . My Bilirubin suddenly jumped from 1.2 (since '99 thru 2005) to 5.5, but i continued on with the Ursoforte until the itching became intolerable and my bilirubin went till 7.0. I stopped everything and the itching reduced, but 2 to 3 weeks ago, i took Isagenix natural Accelerators (cleansing system) hoping it will help reduce my Bilirubin and my yellowing eyes. Of course, it didnt work and now I have been so itchy that i cant sleep, of course its my feet that are the worse. I am sure my Bili is still high because I can see it in my eyes. I am going on 2 wks that I have not been able to sleep well. I am averaging 2 hrs a night...Does anyone have any advice? I will really appreciate it. I am using Benadryl spray but that doesnt help anymore. MICHELLE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 , I feel for you, the itch can be maddening! I've had many sleepless nights and felt like I was going insane. I also have had problems with URSO causing increased itching! My personal experience has been that it helps to work up very slowly to the dosage. I think some peoples bodies (like mine) just adjust a lot slower to the medication. I am now taking 1500mg/day (high dose), but it took me over 3 months to get up to that dosage. When I told my doctor that the URSO was causing me to itch more he thought I was crazy and said that it should be helping the itch if anything. I feel like I got confirmation that I was right when I accidentally ran out of URSO and had a problem with my mail order pharmacy getting it to me timely. Consequently, I was back off the URSO for almost a month. When I tried just jumping back into taking the 1500mg a day it was disastrous! So, I had to go through the whole cycling up process again. Of course, I've learned my lesson on ordering the URSO way ahead of time so I don't run into that problem again. And I try to be patient with myself in getting up to dosage my doctor thinks might be beneficial. I have the same problem with the soles of my feet (and palms of my hands)...it's a particular terrible place to itch if you have ticklish feet like I do! For relief I take Benedryl orally and I have these soft freezer packs that I take out of the freezer and place my feet on. Then I sleep with my feet out from underneath any covers. I also keep the AC low and sleep only with a sheet or nothing as heat aggravates the itch....it's not comfortable to be cold, but it's the lesser of two evils! Benedryl knocks me out, but does seem to help. I've thought that I read somewhere that Xifaxin can help the itch, does anyone know if that is correct? I've tried to reconfirm that online and can't find it. I know there is another similar medication some people in the group take, but I haven't. I will say that my bowels are never as smooth as when I'm on the Xifaixin. When things get really bad with the itch I take Questran on a regular schedule, but it takes a day or two before I feel the effects. Anyway, I hope you can find a way to resolve the itch and eventually take the URSO. I was diagnosed with PSC in 1989, but only started taking URSO about 3 years ago. I wish I had taken it earlier on, but didn't feel like it was all that important since my symptoms were for many years so infrequent. Now I'm in not so good shape with varices. I think the URSO has significantly reduced the frequency of my cholangitis attacks. Hang in there! I'm hoping you get itch under control very soon! Let me know if the ice packs help if you try it. Jeff See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 , I feel for you, the itch can be maddening! I've had many sleepless nights and felt like I was going insane. I also have had problems with URSO causing increased itching! My personal experience has been that it helps to work up very slowly to the dosage. I think some peoples bodies (like mine) just adjust a lot slower to the medication. I am now taking 1500mg/day (high dose), but it took me over 3 months to get up to that dosage. When I told my doctor that the URSO was causing me to itch more he thought I was crazy and said that it should be helping the itch if anything. I feel like I got confirmation that I was right when I accidentally ran out of URSO and had a problem with my mail order pharmacy getting it to me timely. Consequently, I was back off the URSO for almost a month. When I tried just jumping back into taking the 1500mg a day it was disastrous! So, I had to go through the whole cycling up process again. Of course, I've learned my lesson on ordering the URSO way ahead of time so I don't run into that problem again. And I try to be patient with myself in getting up to dosage my doctor thinks might be beneficial. I have the same problem with the soles of my feet (and palms of my hands)...it's a particular terrible place to itch if you have ticklish feet like I do! For relief I take Benedryl orally and I have these soft freezer packs that I take out of the freezer and place my feet on. Then I sleep with my feet out from underneath any covers. I also keep the AC low and sleep only with a sheet or nothing as heat aggravates the itch....it's not comfortable to be cold, but it's the lesser of two evils! Benedryl knocks me out, but does seem to help. I've thought that I read somewhere that Xifaxin can help the itch, does anyone know if that is correct? I've tried to reconfirm that online and can't find it. I know there is another similar medication some people in the group take, but I haven't. I will say that my bowels are never as smooth as when I'm on the Xifaixin. When things get really bad with the itch I take Questran on a regular schedule, but it takes a day or two before I feel the effects. Anyway, I hope you can find a way to resolve the itch and eventually take the URSO. I was diagnosed with PSC in 1989, but only started taking URSO about 3 years ago. I wish I had taken it earlier on, but didn't feel like it was all that important since my symptoms were for many years so infrequent. Now I'm in not so good shape with varices. I think the URSO has significantly reduced the frequency of my cholangitis attacks. Hang in there! I'm hoping you get itch under control very soon! Let me know if the ice packs help if you try it. Jeff See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 , I feel for you, the itch can be maddening! I've had many sleepless nights and felt like I was going insane. I also have had problems with URSO causing increased itching! My personal experience has been that it helps to work up very slowly to the dosage. I think some peoples bodies (like mine) just adjust a lot slower to the medication. I am now taking 1500mg/day (high dose), but it took me over 3 months to get up to that dosage. When I told my doctor that the URSO was causing me to itch more he thought I was crazy and said that it should be helping the itch if anything. I feel like I got confirmation that I was right when I accidentally ran out of URSO and had a problem with my mail order pharmacy getting it to me timely. Consequently, I was back off the URSO for almost a month. When I tried just jumping back into taking the 1500mg a day it was disastrous! So, I had to go through the whole cycling up process again. Of course, I've learned my lesson on ordering the URSO way ahead of time so I don't run into that problem again. And I try to be patient with myself in getting up to dosage my doctor thinks might be beneficial. I have the same problem with the soles of my feet (and palms of my hands)...it's a particular terrible place to itch if you have ticklish feet like I do! For relief I take Benedryl orally and I have these soft freezer packs that I take out of the freezer and place my feet on. Then I sleep with my feet out from underneath any covers. I also keep the AC low and sleep only with a sheet or nothing as heat aggravates the itch....it's not comfortable to be cold, but it's the lesser of two evils! Benedryl knocks me out, but does seem to help. I've thought that I read somewhere that Xifaxin can help the itch, does anyone know if that is correct? I've tried to reconfirm that online and can't find it. I know there is another similar medication some people in the group take, but I haven't. I will say that my bowels are never as smooth as when I'm on the Xifaixin. When things get really bad with the itch I take Questran on a regular schedule, but it takes a day or two before I feel the effects. Anyway, I hope you can find a way to resolve the itch and eventually take the URSO. I was diagnosed with PSC in 1989, but only started taking URSO about 3 years ago. I wish I had taken it earlier on, but didn't feel like it was all that important since my symptoms were for many years so infrequent. Now I'm in not so good shape with varices. I think the URSO has significantly reduced the frequency of my cholangitis attacks. Hang in there! I'm hoping you get itch under control very soon! Let me know if the ice packs help if you try it. Jeff See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I'm sorry you are itching. I really have no advice in that regard. For some reason, never had the problems with itching that others talk about. I do think you should call your doctor and have blood work done. When was your last ERCP? I hope you get some relief soon. wife of UC & PSC 2000 J pouch 2004 TX 11-18-06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Actually I only had one ERCP in 99, but they have this new MRCP which is an MRI but can see everything like ERCP. I had that done in Feb07, there were no major blockages but what worries me is that I read the messages here and notice that some people have very low Bilirubins...I am getting to the point where it is noticeable, and I dont know if i Tell my job or not... > > I'm sorry you are itching. I really have no advice in that regard. > For some reason, never had the problems with itching that others > talk about. I do think you should call your doctor and have blood work > done. When was your last ERCP? > > I hope you get some relief soon. > > > wife of > UC & PSC 2000 J pouch 2004 TX 11-18-06 > Quote Link to comment Share on other sites More sharing options...
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