Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Hello all, I have read most of the messages since joining last week, and have to admit learned more than I could have ever gleaned out of the many doctors I have seen. I went to see a Hep doc in San Francisco back in January. I was actually feeling better; the nausea was minimal, the pain was down, and the fatigue was better. When I returned home to New Mexico, all my symptoms came back and then some. Lately I've been getting extreme hot flashes followed by intense chills lasting sometimes for hours. I increased my compounded estrogen cream but it didn't help. I am up to four times the dose and still no help. I'm getting severe pain on the right side of my abdomen when I eat and then intense nausea. All the doctors I have seen just tell me that I will get sicker and then need a transplant. They didn't bother to say that the PSC would be causing any of my symptoms. Have any of you experienced the hot flashes followed by the chills? Could really use some help here. Thanks, Enid in NM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 As someone already mentioned, fever, nausea, chills and URQ pain etc. can be symptoms of bacterial cholangitis. Hot flashes usually aren't mentioned, but these can accompany a fever also, so I wouldn't rule it out based on them. You definitely do need to find out what's going on, and if you do have a significant fever (it's hard to say exactly what's significant, but I've seen 101.5 mentioned a number of times) it may be time for a trip to the ER. Bacterial Cholangitis can be very serious. Also in my own experience, when I started having mild bacterial cholangitis attacks they kept reoccurring until I had a course of antibiotics, so if you don't have fevers or if they're low grade, you may be able to just get a prescription for antibiotics (Cipro is what I always got) to take. Hope you get it figured out! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 As someone already mentioned, fever, nausea, chills and URQ pain etc. can be symptoms of bacterial cholangitis. Hot flashes usually aren't mentioned, but these can accompany a fever also, so I wouldn't rule it out based on them. You definitely do need to find out what's going on, and if you do have a significant fever (it's hard to say exactly what's significant, but I've seen 101.5 mentioned a number of times) it may be time for a trip to the ER. Bacterial Cholangitis can be very serious. Also in my own experience, when I started having mild bacterial cholangitis attacks they kept reoccurring until I had a course of antibiotics, so if you don't have fevers or if they're low grade, you may be able to just get a prescription for antibiotics (Cipro is what I always got) to take. Hope you get it figured out! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 As someone already mentioned, fever, nausea, chills and URQ pain etc. can be symptoms of bacterial cholangitis. Hot flashes usually aren't mentioned, but these can accompany a fever also, so I wouldn't rule it out based on them. You definitely do need to find out what's going on, and if you do have a significant fever (it's hard to say exactly what's significant, but I've seen 101.5 mentioned a number of times) it may be time for a trip to the ER. Bacterial Cholangitis can be very serious. Also in my own experience, when I started having mild bacterial cholangitis attacks they kept reoccurring until I had a course of antibiotics, so if you don't have fevers or if they're low grade, you may be able to just get a prescription for antibiotics (Cipro is what I always got) to take. Hope you get it figured out! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Enid, Why are you on Estrogen? Does your liver specialist know this? Mine absolutely forbids any HRT, says it's very dangerous for people with compromised livers. Maybe the reason you are having pain right now ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Enid, Why are you on Estrogen? Does your liver specialist know this? Mine absolutely forbids any HRT, says it's very dangerous for people with compromised livers. Maybe the reason you are having pain right now ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 What you are experiencing is part of the disease; however, when you have a cholangitis flare up you will know. At least in my case, my fever spiked, I had chills, I ached all over, my upper abdomen hurt much more than usual, I couldn’t eat due to nausea and I was fatigued. Your symptoms may be different, but unfortunately I think they will be worse than they are now. I had one when they diagnosed me and was lucky enough after my ERCP, to have virtually no symptoms for fifteen years. Then the cholangitis attacks returned. My key for knowing when I had one coming was the fatigue. It is beyond tired, it was closer to exhaustion. From: [mailto: ] On Behalf Of serbrinamv@... Sent: Wednesday, February 25, 2009 6:13 PM To: Subject: Re: Not doing too well Hi I was diagnosed with PSC in 2004 and have had an ERCP to balloon my bile ducts and have had elevated liver enzymes for years. I've been reading on the posts about " bouts of cholangitis " but feel very naïve because I'm not sure what that really consists of and how I will know if I am experiencing that. I often experience discomfort in my upper right side quadrant and have as cites but do those symptoms constitute as cholangitis or are they just part of the disease. Thanks for the help. Serbrina L.A./UC '01, PSC '04 Sent via BlackBerry by AT & T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 What you are experiencing is part of the disease; however, when you have a cholangitis flare up you will know. At least in my case, my fever spiked, I had chills, I ached all over, my upper abdomen hurt much more than usual, I couldn’t eat due to nausea and I was fatigued. Your symptoms may be different, but unfortunately I think they will be worse than they are now. I had one when they diagnosed me and was lucky enough after my ERCP, to have virtually no symptoms for fifteen years. Then the cholangitis attacks returned. My key for knowing when I had one coming was the fatigue. It is beyond tired, it was closer to exhaustion. From: [mailto: ] On Behalf Of serbrinamv@... Sent: Wednesday, February 25, 2009 6:13 PM To: Subject: Re: Not doing too well Hi I was diagnosed with PSC in 2004 and have had an ERCP to balloon my bile ducts and have had elevated liver enzymes for years. I've been reading on the posts about " bouts of cholangitis " but feel very naïve because I'm not sure what that really consists of and how I will know if I am experiencing that. I often experience discomfort in my upper right side quadrant and have as cites but do those symptoms constitute as cholangitis or are they just part of the disease. Thanks for the help. Serbrina L.A./UC '01, PSC '04 Sent via BlackBerry by AT & T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Enid- My husband (62/PSC 2006) has severe boughts with hot flashes and chills. His hot flashes and chills will sometimes last up to several hours. This is sometimes accompanied by mid to severe nausea. Often this happens when he is not taking in enough liquids. He is now home with a central line and I give him IV fluids every several days and it seems to help. Early on when he would get these " attacks " , the chills ( the severe ones where your whole body shakes uncontollably are called " rigors " ) he would not be able to warm up (put blankets in the dryer..it helps) for about an hour or so. Our Gastro doc told us that it was a cholangitis attack. Your urine could turn darker after this also. Now, I do not know what stage you are in, however, my husband has had his bile ducts removed to his liver and artificial stents put in and had his gallbladder removed. They have attached those stents to his small intestines. Sometimes for one reason or another the bile will thicken and this will cause chill/hot flashes/ fever, etc. He takes 900mg of Urso/day...Lactulose 2T/ day /protonix to help with bile acids/ carafate to coat his stomach and fenigrin for nausea / He also has several pain meds that do not metastisize through his liver. They have a calming effect when he is going through this. As far as getting help....there are docs who know this disease and should be making you as comfortable as possible. We are fortunate enough to have one (Dr. Briggs,Tulsa, Ok). He makes our nightmare easier. Blessings. Bobbie > > > Enid, > > I have not had any of the symptoms you mentioned, except hot flashes, and those were > definitely caused by menopause. > > I am on a very low-dose estrogen patch (which has completely eliminated the hot flashes), > and that was approved by my Hep, as long as my LFTs are monitored every 3 months. If > there is any sign of the LFTs steadily increasing, I will have to go off the patch. > > There is a big difference between orally taken estrogen, which must be processed by the > liver, and topically applied estrogen, like you (and I) are taking, which largely bi-passes > the liver. However, you still need to be monitored very closely while you are taking it. It > wasn't clear to me from your post whether you increased your estrogen under the advice > and care of a doctor, or on your own. But it could be very dangerous to increase it 4x > without a doctor's supervision. > > Are the docs that are telling you that you will just get sicker and sicker liver specialists? It > sounds like you might need to look for a specialist who will listen to you and be more > understanding. You definitely should not just accept the symptoms you are having. > > I hope you can find some help and are feeling better soon. > > Debbie > > > > > > > Hello all, > > I have read most of the messages since joining last week, and have to > > admit learned more than I could have ever gleaned out of the many > > doctors I have seen. > > > > I went to see a Hep doc in San Francisco back in January. I was > > actually feeling better; the nausea was minimal, the pain was down, > > and the fatigue was better. When I returned home to New Mexico, all > > my symptoms came back and then some. Lately I've been getting > > extreme hot flashes followed by intense chills lasting sometimes for > > hours. I increased my compounded estrogen cream but it didn't help. > > I am up to four times the dose and still no help. I'm getting severe > > pain on the right side of my abdomen when I eat and then intense > > nausea. > > > > All the doctors I have seen just tell me that I will get sicker and > > then need a transplant. They didn't bother to say that the PSC would > > be causing any of my symptoms. Have any of you experienced the hot > > flashes followed by the chills? Could really use some help here. > > > > Thanks, > > Enid in NM > > > Quote Link to comment Share on other sites More sharing options...
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