Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Hello everyone, My husband has been told that the doctors think he has PSC. He has had elevated liver enzymes off and on for 12 years and they always thought it was due to other causes. He was diagnosed with Crohns 10 years ago but for the last 4 years has taken nothing for it. He was on 9 Asocol a day. Once they removed his gallbladder all those symptoms went away. He did great for 1 and half years until he started school. Since January he has had very strange episodes where he feels a pain in his stomach and then within about 20 minutes he begins to shake with chills and spikes fevers sometimes as high as 103. After many trips to the ER and Cipro, we are beginning to manage these episodes at home. Sometimes these episodes lead to pacreatitis, he has had it 3 times in his life now. Two episodes cleared up very quickly. The strangest part of them is that they come every 5 weeks. We don't know if there is a pattern or is it due to stress (he is in the last semister of nursing school). They do seems to come after a big test or just before the semsters start. He has had a liver biospy and it is clean, although I understand that they could of just gotten tissue from an uninfected area. He has had 2 ERCP's . The first said they thought there was slight narrowing of the duct and the second one last year, they saw no narrowing. The liver center here in Phoenix keeps tellling us that they are just waiting to see as the disease progresses. They won't give him a diagnosis but keep telling us it looks like PSC. I have been doing so much research to see what the signs and symptoms of PSC and to look and see what common misdiagnosis there are as well. They have mentioned autoimmune hepatitis to us but because of these latest episodes and Cipro working to clear them up they are leading towards PSC. Are these episodes common and do they have a pattern. I would appreciate any input or literature that you are aware of. My heart goes out to all of you. This is a hard disease to understand. So much is unknown. Thank you in advance for your help, Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Hi Pamela, I have had the same thing happen to me three times in the last six months although I'm not sure if its related to PSC or if I'm just picking up whatever virus is going arond. I will get fevers and chills and my RUQ will hurt worse than usual. My highest temp has been 103.8 but it usually hovers between 101-102. It lasts a couple days and then stops. I fight the fever at home, stop eating and just walk around in blankets and sweaters shivering and sweating at the same time. Very attractive I might add. I have never gone to the ER for it - usually because it happens on the weekend or when I have something going on at work that I can't miss. I talked to my dr. about it after the first episode and he told me not to worry about it unless the fever lasts 3-4 days and I can't get it down on my own. I have had pancreatitis a couple times after ERCP's but these episodes aren't usually around an ERCP so I don't think its related to the pancreatitis. Someone else here might have better info for you and actually I'm curious to see what they say. Darcy very strange episodes where he feels a pain in his stomach and then within about 20 minutes he begins to shake with chills and spikes fevers sometimes as high as 103. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Pamela, Periodic episodes of chills and fevers are one way that bacterial cholangitis presents in PSC. The rapid onset and relatively short duration can cause you to underestimate how serious they can be. I certainly did when those things happened to me. It took several cycles before I realized the fever episodes were connected and weren't going away on their own. Wihhout treatment they were occurring almost weekly, cipro quickly controled them and greatly decreased their frequency to once or twice a year. My doctor discussed constant antibiotic treatment, but settled on taking antibiotics only when symptoms occurred. Others in this group have had bacterial cholangitis that required stronger IV antibiotics to control. I have never seen a medical explanation for these periodic fevers, but my hypothesis is that they are caused by an infection isolated behind a stricture that breaks through the stricture occasionally, releasing toxins into the intestine where they quickly trigger the body's fever response. Because the mass of the infection remains isolated within the bile duct stricture, once the pressure is released by the breakout, no further toxins are released (until the next breakout), causing the fever to quickly subside. The danger is that the breakout may not be through the stricture, but into the bloodstream, causing sepsis. Tim R > ... had very strange episodes where he feels a pain in his stomach and then > within about 20 minutes he begins to shake with chills and spikes fevers > sometimes as high as 103. After many trips to the ER and Cipro, we are > beginning to manage these episodes at home. Sometimes these episodes lead > to pacreatitis, he has had it 3 times in his life now. Two episodes cleared > up very quickly. The strangest part of them is that they come every 5 > weeks. ... The liver center here in Phoenix keeps tellling us that they are > just waiting to see as the disease progresses. They won't give him a > diagnosis but keep telling us it looks like PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Pamela, It may be small-duct PSC, which is harder to diagnose, since the ERCP often comes back negative, and as you say, with the liver biopsy, it may not show up because of the area of the liver that was viewed. It can take years for a diagnosis. But you seem to have good doctors, if they are still following him, and suspect it's PSC or AIH. In fact, it may be both, as about 10-20% of PSCers also have AIH. I started with small duct PSC, and last year was diagnosed with AIH. So far I haven't had a cholangitis attack or pancreatitis, but both are fairly common, along with fatigue and itching. -Marie > Hello everyone, > My husband has been told that the doctors think he has PSC. >He >has had elevated liver enzymes off and on for 12 years and they always >thought it was due to other causes. He was diagnosed with Crohns 10 years >ago but for the last 4 years has taken nothing for it. He was on 9 Asocol a >day. Once they removed his gallbladder all those symptoms went away. He >did >great for 1 and half years until he started school. Since January he has >had very strange episodes where he feels a pain in his stomach and then >within about 20 minutes he begins to shake with chills and spikes fevers >sometimes as high as 103. After many trips to the ER and Cipro, we are >beginning to manage these episodes at home. Sometimes these episodes lead >to pacreatitis, he has had it 3 times in his life now. Two episodes >cleared >up very quickly. The strangest part of them is that they come every 5 >weeks. We don't know if there is a pattern or is it due to stress (he is in >the last semister of nursing school). They do seems to come after a big >test or just before the semsters start. He has had a liver biospy and it >is >clean, although I understand that they could of just gotten tissue from an >uninfected area. He has had 2 ERCP's . The first said they thought there >was slight narrowing of the duct and the second one last year, they saw no >narrowing. The liver center here in Phoenix keeps tellling us that they >are >just waiting to see as the disease progresses. They won't give him a >diagnosis but keep telling us it looks like PSC. I have been doing so much >research to see what the signs and symptoms of PSC and to look and see what >common misdiagnosis there are as well. They have mentioned autoimmune >hepatitis to us but because of these latest episodes and Cipro working to >clear them up they are leading towards PSC. Are these episodes common and >do they have a pattern. I would appreciate any input or literature that >you are aware of. My heart goes out to all of you. This is a hard >disease >to understand. So much is unknown. > Thank you in advance for your help, > Pamela ><< BackGrnd.jpg >> _________________________________________________________________ Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! http://www.cafemessenger.com/info/info_sweetstuff2.html?ocid=TXT_TAGHM_OctHMtagl\ ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Darcy, Thank you for your input. 's episodes do not go away with Cipro. This last one we tried without and it took 10 days before we got our hands on some. The strange things is with these high fevers his white blood count is normal so it is more than likely baterical. We have it all marked on the calender so we'll see if it stays the course at 5 weeks apart. Do you know anyone in AZ with PSC? Thanks Pamela -- Re: new member seeking help Hi Pamela, I have had the same thing happen to me three times in the last six months although I'm not sure if its related to PSC or if I'm just picking up whatever virus is going arond. I will get fevers and chills and my RUQ will hurt worse than usual. My highest temp has been 103.8 but it usually hovers between 101-102. It lasts a couple days and then stops. I fight the fever at home, stop eating and just walk around in blankets and sweaters shivering and sweating at the same time. Very attractive I might add. I have never gone to the ER for it - usually because it happens on the weekend or when I have something going on at work that I can't miss. I talked to my dr. about it after the first episode and he told me not to worry about it unless the fever lasts 3-4 days and I can't get it down on my own. I have had pancreatitis a couple times after ERCP's but these episodes aren't usually around an ERCP so I don't think its related to the pancreatitis. Someone else here might have better info for you and actually I'm curious to see what they say. Darcy very strange episodes where he feels a pain in his stomach and then within about 20 minutes he begins to shake with chills and spikes fevers sometimes as high as 103. Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Hi Pamela, Just to give your husband hope, I had liver disease throughout my nursing training (in the U.K) and ever since, through subsequent courses and have survived! After liver transplantation in 2000 I did more training with my renewed health and still am. I have now been diagnosed with U.C and probable PSC too, in recent years and now I’m doing yet another nursing course! Just one thing, would your doctor give you cipro to keep at home, just in case, if you know what I mean. Regards, Debbie (Essex, England) AIH 1979 Ltx 2000, U.C 2005, PSC?? 2006 No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.6/1060 - Release Date: 09/10/2007 16:43 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Pamela, Sorry I don't know anyone in AZ at all. I live in Ohio and have only been to Phoenix once. You have much better weather in AZ. One of the polls for this group is on what state you are from. You might want to check there and see if anyone is from AZ. Darcy Do you know anyone in AZ with PSC? Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Debbie, Yes, they have finally after this last 10 episode have given us Cipro for at home. We now have pain meds and anti naseau stuff as well. Do you experience these fevers and chills? Do they feel stress is a trigger? He always gets extreme joint(mostly hip) pain anytime his liver enzymes go up even when there is no fever. Strange. The doctors have been wonderful and very good at keeping in school. Several times he had to be hospitalized with his symptoms but as soon as the enzymes were somewhat"normal" they would discharge him even if it was 11pm so he would not a clinical day. Since he is in a exelarated course you can only miss one clinical day each block. That has added alot of stress as well. After reading the post and the journal articles I think the doctors may have finally found his mystery disease. He may have small duct PSC. Not sure exactly how they will diagnose but we are learning as we go. Thank you so much for your encouraging words. Pamela -- Re:new member seeking help Hi Pamela, Just to give your husband hope, I had liver disease throughout my nursing training (in the U.K) and ever since, through subsequent courses and have survived! After liver transplantation in 2000 I did more training with my renewed health and still am. I have now been diagnosed with U.C and probable PSC too, in recent years and now I’m doing yet another nursing course! Just one thing, would your doctor give you cipro to keep at home, just in case, if you know what I mean. Regards, Debbie (Essex, England) AIH 1979 Ltx 2000, U.C 2005, PSC?? 2006 No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.488 / Virus Database: 269.14.6/1060 - Release Date: 09/10/2007 16:43 Quote Link to comment Share on other sites More sharing options...
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