When to worry

Hi. I am 42 and was diagnosed with PSC 10 years ago. At the time I was really sick, with significant weight loss (60lbs) and sky-high LFTs. After treatment for bacterial cholangitis, I felt better. But then I was diagnosed with UC, and had a severe flare that took about a year and a half to get under control with Remicade. Then I had a baby. I have been in full remission with A+ bloodwork since 2014. Not a single thing out of range. Until January 2020, when my ALT was mildly elevated. My bilirubin was also kissing the ULN. I freaked out. Got my MRCP scheduled within days (thankfully was already on the waitlist). It didn’t show anything new. The radiology report doesn’t remark on progression of disease, just says no concerning focal masses or lesions. But now it’s March and I feel terrible. I have the same kind of abdominal pain as when I was first diagnosed. Not as terrible- I am not yet keeled over, but definitely the same kind. Upper abdomen, feels like a clogged drain, worsened with food, especially high fat or meat protein. Not enough to stop eating yet, but I feel like it’s coming. I am fatigued +++ and my temp is running around 99.9. Of course, my hepatologist retired in May, and I don’t have an apt with her replacement until August (since I have been a low priority case as I have been quite well for years). My bloodwork isn’t due to repeat until April. I am a little panicky because I feel like a relapse is coming but also, my MRCP didn’t show anything so maybe I should relax? Anyone else been in a position where they were able to live a normal life for 5 years, almost forgot they have a rare disease and then have it rear it’s ugly head to remind you? What happened? I fear it’s the CCA. I have 3 young kids and live in constant fear of it.

Yes, diagnose in 2002, had flare up in 2004 and then again 2 years ago. The last one was from Augmentin, which should not ever be prescribed to anyone with PSC. I took it for two days, immediately had dark urine, and then was in the hospital for 2 weeks. Liver is in worst shape now, but back to feeling normal. My opinion was stress brought on the flare up in 2004, so I would try to relax. I also changed my diet, trying to eat low fat, lean protein and recently GF. Haven’t given up the sugar, but don’t think it helps. Good luck.

From all that I have read, many people are able to go for years being asymptomatic. When I was pre-tx, I knew that I had to be mentally ready at any time for a symptom to arise. They will.

My standing order was to get to the ER if my temp hit 101. I hope your temp broke before it hit that.

With your blood work coming up in April, make sure they do a CA-19 test as well. That is a marker for CCA. If it is elevated, you might be able to get an appointment sooner as a higher priority.

Hi for many years I would have an attack 24hours flat out then pee brown poo white + jaundice 2/3 times a year . No treatment docs didn’t understand (UK). 2004-2010.
Then they discovered after a new doc checked PSC. Still no treatment by now attacks maybe 1 p year.
I was told sediment in bile duct.For no reason I knew attacks stopped. I stopped seeding docs cos I never had anything to say .Then 1attack ,I was over it when a blood test got me admitted to hosp. I was over the attack but I was an enigma numerous docs cud not understand .
3d MRI showed half bile ducts in liver gone , then I went home . No more attacks . Till few years later just a mild one . New town new doc regular bloods and all is fine .
No idea what shape liver is in . I take alcohol, eat what I like ,only thing I cut out is stress, I don’t get involved and walk away from all stress incl family, I do not get involved.good luck . Would say if you have an attack go straight to emergency dept .