New Member here. I am still waiting for a final diagnosis, but my hepatologist believes I may have PSC. Until now, I have only had elevated liver enzymes with no other symptoms.
This past 7 days, I have started feeling nauseous. I have begun itching as well. I thought maybe it was just a virus, but I would have expected it to clear up by now. I see a lot of discussion on this website about the itching, but not too much about nausea.
Have any of you experienced nausea on an ongoing basis? If so, what, if anything has helped reduce/eliminate the nausea?
All of your comments will be greatly appreciated. PSC is new and frightening to me. I am just trying to figure out if the nausea is common, or if this means the progression of my disease is further along than originally thought.
Thank you so much.
Hi Steve, sorry you are ill. Yes, it’s can be overwhelming reading, and hearing about PSC diagnosis. Gaining some control over symptoms helps a lot. Yes, nausea can be common, and source can be related to blockages of bile flow. The ducts between liver, pancreas, and gall bladder can be affected. I felt most nausea when I had infection from pooling bile, and with GI distention. Treating infection, bowel rest, and then small non fatty meals, helped relieve itching, and nausea. Nausea isn’t a measure of progression, but can part of symptoms related to strictures blocking bile ducts. Bile flow can be impeded by autoimmune inflammation, infection inflammation, and/or duct scarring. Therefore, it can wax, and wane, depending on your current conditions.
Hello and welcome to the group. I can tell you from my experience, the only way I was able to control my itching is a medication my liver doctor prescribed called "Rifampin". I take One 300 MG capsule two times a day. It really has made a difference in my quality of life. I've been taking it daily since diagnosis in 2011. I'd ask about that drug.
Regarding nausea, oh I know what you mean. If you do get the final diagnosis of PSC you will find that certain cooking smells, etc. will cause a lot of nausea at times. It got so bad with me, my wife does any kind of stir fry, cooking hamburgers or any kind of meat like that out on the back porch in an electric skillet. I just couldn't take the smells. We burn a lot of vanilla candles which helps me. One medication I have found that helps me is Zofran. It's an anti-nausea drug that doesn't make you sleepy. I take one 4 MG tablet twice a day. It can be taken every 8 hours as needed for nausea but twice a day works for me.
Hope this helps.
I was diagnosed as having PSC, incorrectly. I was treated for 2 plus years as though I had PSC. After changing doctors and some additional tests, Mayo concluded that I might have Auto-Immune Pancreatitis. That is treatable with Prednisone and anti-rejection drug (Imuran). A year and a half latter, I'm doing fine. My advise is don't just settle for their diagnosis of PSC. You could be lucky like me. My best wishes for you.
Nausea comes and goes, can stick around for a while, then lift completely. For 2 mths, been having recurrent late afternoon appetite loss - with and without light nausea. A few times a week. Lifts after a couple hours, feel fine, can eat normally. Same feeling that sometimes precedes cholangitis attack. LFTs been ok. Anyone else have this?
Fountainman - That's the trouble with autoimmune pancreatitis, it's often misdiagnosed for other diseases, particularly pancreatic cancer and sometimes completely unnecessary Whipple procedures are done. IgG4 testing should be routinely done on patients with bile duct issues. My AIP (with secondary sclerosing cholangitis) has not resolved despite several runs of prednisone and 6 years immunosuppression on Imuran.
On another note.. anyone having trouble with this site the last couple days? Last few discussions are not appearing at all - can only access them by link via my email. Have logged out and back in, no change. ??
Luckily I have not had any issues with nausea.
Thanks to all of you for your responses.
Mark - Appreciate the tips on Rifampin and Zofran. I will have to discuss this with my hepatologist at my next appointment. I have been following your posts; wish you the best of luck on your transplant journey.
Alix - What you are describing is very similar to what I have been experiencing with the sometimes lack of appetite, especially in the afternoon. Mine is often accompanied by light to moderate nausea...not intense enough to lose my cookies, though. I do find it often clears up and then I feel fine for a while. Is the IgG4 just a blood test that is ordered?
Fountainman - Glad to hear your condition is treatable.
FYI,. this journey started about a month ago, when blood tests revealed the following:
ALT and AST have come down since then, almost by half. GGT and ALP are still very high.
Next appointment is 7/22/15. Most likely, hepatologist will either recommend liver biopsy or MRCP. Hopefully this will shed some light on what is going on.
IgG4 is a blood test (at least $225) that will generally be quite elevated with autoimmune pancreatitis and is instrumental in diagnosing the disease. Oftentimes, the symptoms will mimic other diseases, but enough is known now about AIP that it should not be overlooked (though often is) during the diagnostic process when pancreas and/or bile ducts are involved. If AIP does not respond to steroids, then the bile ducts can go the same route as PSC with increased chance of necessity for liver transplant. I have already had preassessment for transplant.
I hope you will have some answers at your upcoming appt.