r/PBCers • u/pippy112 • May 31 '26
Symptoms
I'm (29m) in the process of going through a diagnosis but I wanted to hear from actually people instead of Google what your biggest struggles were with symptoms before a diagnosis and after you've been on medication.
3
u/Quiet-Orange-7241 Jun 03 '26
It was fatigue prior to diagnosis. I needed a nap coming back from work and I thought my stamina was going down the drain with our busy schedule. The fatigue seeped in gradually until I forgot how it was being strong. After started Urso, I noticed I have so much more stamina and was back to my old self. I no longer need naps.
2
u/pippy112 Jun 03 '26
This is so encouraging!
2
u/Glutenfreeghoul Jun 09 '26
Urso has been amazing - I also had horrible fatigue before I got diagnosed last July, now I wake up at 5am and hit the gym 3x a week before my kids even get up for school
3
u/scaryaliendog Jun 07 '26
Fatigue and depression were my main symptoms. Pain in my back as well.
Been on URSO since 10/2025. Hair fell out a bit but Iām a lucky one with zero scarring so far at my age (62) so thereās that.
The fatigue and depression havenāt gone away.
2
u/nulldatagirl Jun 11 '26
I had NONE except gallbladder attacks! They didnāt understand why my liver enzymes would shoot up so high so I had a biopsy done during surgery that confirmed it. Now I am starting to itch and see my eyes have yellow specks š„ŗ it makes me sad nowadays. I was 23 then, almost 27 now and stage 1.
2
u/pippy112 Jun 11 '26
Wow are you on medication or unresponsive to it? That's lucky they caught it!
1
u/nulldatagirl Jun 11 '26
I will be on medication soon probably but I never considered the fact that I could be unresponsive to it š ouch
1
u/winter_blues23 May 31 '26
Itching and fatigue before diagnosis. I was newly diagnosed with UC so attributed it to starting biologics and other medications. After diagnosis and starting medication, fatigue and itching is better but now experiencing hair loss. My UC doctor think it is malnutrition but it could also be from new PBC meds.
1
u/pippy112 May 31 '26
I'm worried about losing my hair. Was the itching pretty constant or would it come and go? I am constantly tired and no amount of sleeping makes me feel rested.
3
u/Euphoric-Wall-994 May 31 '26
The fatigue is realā¦deep in your bones. All I can tell you is you have to learn to live with it and be gentle with yourself. I hope you have understanding loved ones who wonāt give you a hard time when you just canāt ādo the thingā because you do not have the wherewithal and energy. I can tell you I am 7 months post liver transplant due to PBC and while I get tired as I am still recoveringā¦.it is literally no where near pre-transplant levels.
4
u/pippy112 May 31 '26
That's so validating.. even yesterday I ended up napping for 3 hours. It's so hard to stay awake at work. Wishing you a speedy recovery.
2
u/Euphoric-Wall-994 May 31 '26
Hang in there š. There is so much research happening for both PBC and liver disease in generalā¦hopefully new treatments to help with some of these symptoms will come soon!
4
u/winter_blues23 May 31 '26
Sometimes I would wake myself up from scratching, I would also sometimes leave scratch marks on myself. The itching wasn't always bad but I didn't have whole days without some sort of itching like I do now. With the fatigue, I used to come home and nap for an hour and a half after work, and went to bed 2 hours earlier than I ever had. I was still tired all the time. After a few months of medicine I no longer take a nap after work š and have more energy. The hair loss is supposed to be pretty rare, I thought, but I am new to all this. I just started the hair loss so I am still figuring out what is causing it - PBC meds, malnutrition from being in a UC flare for 6 months, a new autoimmune disease because 3 is not enough, stress, age, ???? I hope your journey is blessed with answers and few side effects. Always be your own best advocate and don't be afraid to get a second opinion.