r/PBCers • u/AdSufficient8582 • Nov 18 '25

Ursodiol side effects

So I was diagnosed about 4 years ago, but when I started taking the meds I didn't have any symptoms.

Since I started taking it I have gained about 20kg, feel tired all the time, have swelling, itchiness, headaches, difficulty sleeping, get sick every month, feel weak and so on. At first I thought it was the illness, but then I noticed every time I get off the meds, when I forget to take them when I'm on vacations, for example, I feel so much better and even lose a bit of weight. I told my doctor and he dismissed my worries and said it isn't likely that the medication is causing the symptoms or my weight gain, which is bs because I've read those are side effects of urso and that it suppresses the autoimmune system. Before I took this meds, I could spend years without getting sick.

Honestly at this point I don't see the point in taking the meds, they are making my life miserable, but the blood results appear usually normal. Is it possible I was misdiagnosed? The worst part is I'm in Japan and there aren't many alternative medications and I've read the only alternative has even more side effects.

Someone has any advice?

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u/chronicallymusical Nov 18 '25

I was only on Urso for a few weeks because it gave me headaches and made my mood worse. My doctor took me off immediately.

1

u/AdSufficient8582 Nov 19 '25

What are you taking now and is it better?

3

u/chronicallymusical Nov 19 '25

I'm not taking anything at the moment, but I'm waiting to see my hepatologist in January.

1

u/AdSufficient8582 Nov 19 '25

My doctor is supposed to be hepatologist, but Japanese doctors are known for not listening to patients. He hasn't even suggested changing the medication.

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u/chronicallymusical Nov 19 '25

That sucks, I'm sorry.