PBCer with sudden Fatigue/Exhaustion

[Joycie193]

I am a 59 yo female in the US, stage 1-2 PBC. I was diagnosed in 2006 after invests. Into my horrible bout of heartburn. I’m in pretty good health and taking Urso. I’ve done clinical trials and tried additional meds thru the years as well, in doing so I was found to have Gilbert’s? syndrome where I have a high count on the norm so clinical trials have been tough to get into much to my and my specialists dismay.

Problem as of late is FATIGUE…all of a sudden? I am exhausted all the time! I find it difficult and must make myself do things that I usually love to do? I’ve also gained over 10 pounds in the last year? I know fatigue is PBC but what I’m dealing with now is so frustrating!!!

is there anything that any of my fellow PBCers have been prescribed that is helping with fatigue and maybe even losing weight?

Many thanks, Joyce

Ps. Blood, Fibroscan, and my Dr. appt next month

[Tango52]

Hi Joyce,

I was diagnosed with PBC in 2019 and am now at stage 4. Fatigue is my worst symptom I have to cope with and like you I am finding even the most pleasurable things hard to do. I have compared it to a car fuel tank which starts off full in the morning and decreases during the day depending on how much I do. If I am going out for a walk I come back and take a nap later to refill the tank. Worth a shot I think, good luck.

Best regards,

Tony

[Readlots]

Hi Joyce, unfortunately fatigue is really common with PBC and it’s the one thing they cant medicate for. Having said that, if this is a new and worse symptom for you, it’s worth getting it checked out. There are lots of other things that cause fatigue including but not limited to menopause and an under active thyroid. Both treatable so worth having a conversation with a GP.

[Dinasmom]

Do some research on the supplement Sam -e. My hep approved it because of the benefits it has on the liver. I ran out of it a few months ago and stopped taking it. Over time I began feeling very tired in the afternoon with little motivation. Started taking it again and that all stopped. I realize one example is not proof of anything but it also has benefits for liver disease. See below and discuss with your physician.

sciencedirect.com/science/a...

[Lu11 in reply to Dinasmom]

This sounds amazing! Thank you for sharing!

[fiona446]

yep, please don’t assume it is the PBC causing the fatigue. Menopause, thyroid, anaemia, vit deficiency etc etc. time for a full body MOT by your GP!

[Eternity6]

I have been diagnosed with Pbc only few weeks ago I have underactive thyroid take levo urso 1.250 daily mercap 75 Mg and feel horrendous today no energy at all feel winded and legs aching arms ache have to keep sitting down, I’m having weekly blood tests I’m on 5 Mg pred , second lot blood tests this afternoon, my hep is saying that he possibly put me on 9mg of bude but wants to wait and see what the 4 weekly blood tests show

[Eternity6]

meant to say I have had autoimmune hep for 14 years had liver biopsy in May now being told I have AIH / pbc overlap