Interested to find out what a flare up looks like to others. I’ve read the standard texts of it it being the pain, fever, etc, but given PSC is so variable I’m interested if anyone has had it in other forms.
Reason I’m asking is over the last 12 months I’ve had a couple rounds of nausea come on in the evening, then by the next morning I have awful belching (sometimes still tasting dinner from the previous night, ugh) no appetite, sometimes (although rarely) vomiting. This will last 12-48 hours, some mild jaundice will rise up, and then it fades again and I go back to being entirely symptom free again for another few months.
Because I never get any pain or fevers or chills, I’ve never really considered it as a flare, as I’ve always been told they’re the hallmarks to look out for, but I can’t think what else would cause such symptoms. My normal bloodwork is okay, and no major issues on routine imaging.
I have a box of cipro in the cupboard, directed by my specialist to have on hand during a flare, but have never considered taking it during….whatever this is.
Has anyone else had flares that don’t act like the textbooks say? Is it possible it’s not a flare, but something like a temporary or partial blockage of something that clears itself out after a few hours?
TiredTiger,
Sorry you are having problems right now. A couple of things to consider. For nausea my hepatologist prescribed Zofran that I always had on hand and there were days I took one every day. Just the smell of food gave me a time. As far as the belching, ask your doctor about prescribing a Proton pump inhibitor like Protonix. It really made a difference to me and I have continued taking it post transplant.
Regarding Cipro, that really is if you start running a fever over 100.5 or higher indicating you may have a cholangitis attack. This can come on due to a blocked bile duct or a stent from an ERCP that’s been in there too long and has become blocked, infected, etc. You would start the Cipro and depending on how bad you are feeling, how high the fever goes you would go to the ER. Of course always follow the particular directions of your hepatologist. If it’s after office hours you can always call the hospital he’s associated with and have the on call hepatologist paged to call you back. I hope things will become more stable for you.
I think flares can be very different for PSC sufferers. I’ve only had chills once (about 5 years ago), but occasionally am very fatigued and sometimes have ascites. Pruitus comes and goes as well. That’s what my flares look like. Its one of the frustrating parts of the disease, it can manifest itself differently among patients. Fortunately mine have been short lived, but there’s always the nagging question, “what if this is the new normal?”
Certainly agree with Mark, that the Cipro isn’t for a general flare, but much more for the high fever.
Yeah, I didn’t think it was bad enough to need the Cipro.
Normally I’d just put it up to a stomach bug, but it’s mostly the appearance of the jaundice for a day or two afterwards that triggers my PSC anxieties, I’ve mentioned it to my specialist but she doesn’t seem that concerned at this stage given everything seems okay otherwise.
Even if it is an unrelated stomach bug it could easily upset the rest of the system, I guess.
The only times i took Cipro was when I was jaundiced.
PSC can bring about quite a few symptoms. Luckily, I did not have HE, nausea, varices or ascites.
While you have some symptoms going on, I am thankful you do not have any pain, fever or chills.
Speaking of belching, in the several weeks before my first cholangitis attack, my wife said that my breath was pretty bad. Have a family member give you an honest opinion. It may be an indicator, might not.
My “flare ups” are exactly like how you are describing! Down to the belching. Mostly I feel nauseated and my appetite disappears for a few days along with fatigue. I also get a little jaundice after (most of the time just in my eyes).
Ive noticed that these episodes follow periods where I’ve eaten a particularly unhealthy meal (pizza, fried foods), periods of stress, or lack of sleep. I also notice that my stool gets lighter during these episodes, so I think you are spot on that it’s a temporary partial blockage of the bile duct caused by increased inflammation without infection.
Thankfully, I’ve gone 2 years without needing an ERCP, but there was a period when I was first diagnosed that I needed one every few months to balloon my ducts, no stents. Even then, I’ve never had a classic flare up with an infection needing antibiotics. When I notice those symptoms you’ve described, I make sure to get extra sleep, drink lots of water, and eat extremely healthy. So, far this has cleared it up for me.
Very interesting to hear someone that has a similar experience!
It’s good to see someone else has my little pattern of weirdness!
I’m currently going through another one of these little flares, been 2 days now (sadly couldn’t relax this weekend and get better, had house renovations to do), had no appetite, very fatigued, little bit of RUQ pain, and then our old friend, Mr. Jaundice showed up.
I am feeling a little better today and like I actually might wanna eat something again soon, so hopefully it’ll pass, just like all the others. I might discuss an ERCP with my specialist though, seeing as these keep recurring.
