Ursodeoxycholic acid intolerance

[Juhainar]

Hi everyone, I was recently diagnosed with Primary Biliary Cholangitis (PBC), and my doctor started me on UDCA. Unfortunately, I’m struggling to tolerate it. For those who have faced a similar situation, what alternatives worked for you? Did the alternatives provide results comparable to UDCA?

[nanashon]

I struggled with urso to start with, it caused many tummy issues which did eventually settle but it did take a while. I do find though even almost two years down the line the med does make my stomach much more sensitive than it ever was.

[Juhainar in reply to nanashon]

Thank you for your reply.

I’ve been to the ER twice in the past month due to diaphragm irritation, which led to pleural effusion, partial lung collapse, side pain, and abdominal pain. Initially, I believed these issues were caused by the biopsy, as I experienced discomfort shortly after. However, tracking the timeline, I realized my condition worsened significantly after starting UDCA and only improved once I stopped the medication. I am not sure what the doctor will be deciding. I’m just concerned that with a progressive disease like PBC, the opportunity to slow its progression may become more limited.

[Researchfreak in reply to Juhainar]

You should see your hepatology person. There is another drug but it too has side effects and the heptologist would have to take it to the liver team to decide if you’d be better off . Great Dr helping but liver team have more knowledge. Good luck

[Juhainar in reply to Researchfreak]

Thank you for the insight. I will reach out to request an appointment today.

[Candy12 in reply to Juhainar]

I found your post really interesting, I’ve been on URSO for 15 years without any side effects except in the first few months where I had tummy issues. However reading your post on the lung and diaphragm issue, triggered some thoughts in my mind. Due to a different issue I’ve had over the years , but following tests and X-rays has bought no diagnosis I’ find I’am wondering. So thanks for posting , it will prompt me to speak to my consultant about this possibility. She’s always maintained I take my urso in split doses and not all at once. There are other new drugs that can be given now so have that discussion, hope you find the answer soon.

[Juhainar in reply to Candy12]

Thank you for your reply. I didn’t expect this either and initially thought it was all related to the liver biopsy, which led to them prescribing multiple medications to manage it. I went through a week of medications, followed by three days where I completely collapsed, and then another week of treatments. Nothing seemed to help until I stopped taking UDCA. Since then, I’ve been feeling better each day.

[Juhainar in reply to Candy12]

Would you mind sharing the issues you experienced that you think might be related? My X-ray didn’t reveal anything, but the CT scan did.

[Candy12 in reply to Juhainar]

My issues were/are around sudden difficulty breathing, the feeling that the diaphragm is/was not moving up and down not all the time but comes in bouts. Also lots of pain for a while, it was decided it was costochrondritis. I had chest X-rays, MRI, heart monitor and endoscopy investigations thankfully all clear.

The reason I wonder now is due to knowing if I take my tablets near bed time, thats when I get the issue with the breathing. My consultant has always said take the urso in split doses , but never said why. So makes me wonder.

[Juhainar in reply to Candy12]

Yes, it sounds similar to what I experienced recently. The pain was there with every breath and worsened when yawning, sneezing, or even burping😐. It eventually progressed to the point where I would wake up from the sound of my lungs gasping for air every 40 minutes. Thankfully, it all stopped once I discontinued UDCA.

The pulmonologist mentioned that the issue did not appear to be triggered by the respiratory system. He explained that any extension or irritation of the liver capsule could impact the diaphragm and possibly the lungs, as all the symptoms were localized to the right side of the body.

[Candy12 in reply to Juhainar]

It’s good you’re getting advice from your doctors that’s always important. I would speak with your liver doctor as well.

My pain was not made worse or better with breathing, it was on both sides not just the right so I beleive the pain was different from the breathing issues. But yes I awake gasping but again it’s intermittent, I do have issues with some of the generic urso tablets, so perhaps that was the key. I’ve got prescription, for the branded urso now so I’ll see how it goes. Hopefully you can get the answers needed for you to take the medication or one of the newer ones. Your pulmonologist input was interesting.

[Juhainar in reply to Candy12]

Thank you Candy, Hope that the branded urso will work for you.

[DonnaBoll Administrator in reply to Juhainar]

How are you doing?

[janetfolley]

It took me at least 3mths for my body to get used to Urso but I've been on this medication for 21yrs now and without it my PBc would be worse.. Try to tolerate the medication it will benefit you in the end.

[Juhainar in reply to janetfolley]

Thank you, Janet. I’m glad to hear the medication helped you. For me, the pain in my diaphragm was unbearable—it completely disrupted my life. My oxygen levels dropped from the usual 98 to 92, and I couldn’t sleep because of the constant hiccups. I truly hope the doctor can find a way to make it work for me.

[exy21]

I cannot tolerate urso either. I'm now on benzofibrate and had remarkable blood results since. Never had "normal range" bloods for over 16 years. My specialist is very happy. They did say if I didn't tolerate it there was others to try. So talk to your specialist.

[Juhainar in reply to exy21]

Thank you so much for your reply! I’m glad to hear that the alternatives are working. :))

[DonnaBoll Administrator]

I am so sorry all of this is happening to you. It sounds awful. I find it hard to believe that all those diaphragm issues are from the Urso. I hope you get some answers soon for some relief. My only advice about the Urso would be to even take just one pill/capsule a day for a few weeks - working up to the dose recommended. Make sure you are taking the right dose though - 13-15/mgs/kg of body weight. The dose is only given according to your weight - never lab results or symptoms. Please let us know if you get any answers. I pray you start feeling better very soon. Like several others said, taking the Urso can help the bile ducts function to maintain liver function. I know, feeling as badly as you do, that it seems that maybe the Urso isn't worth the symptoms you're experiencing. I hope you find some relief and can continue taking it.

[Juhainar in reply to DonnaBoll]

Thank you, Donna, for the suggestion and for the reply. I will discuss with my doctor the possibility of trying just one 250 mg tablet a day instead of the four prescribed.

[DonnaBoll Administrator in reply to Juhainar]

Some people take it at night to help avoid any nausea... it's really trial and error for most of us to see what works.

[ninjagirlwebb in reply to Juhainar]

Always take it with food or after a meal

[DonnaBoll Administrator in reply to ninjagirlwebb]

Thanks for the tip to her..... we are all in this together, aren't we?

[ninjagirlwebb in reply to DonnaBoll]

Yes…we have to support each other. Mostly some of my friends/family dismiss my condition/concerns because it is not outwardly blatant or understood.

[DonnaBoll Administrator in reply to ninjagirlwebb]

That old adage "you look good" can feel like folks, including health care, are almost dismissive about how we might really feel. All I keep telling myself is that everyone here does understand. I know we all likely 'look good' but we know that doesn't tell the real story many times. I do have family and some friends who 'get it'. For them I am thankful.

[MLWFP]

Hi, was the brand Ursofalk? Are you in the UK?

[Juhainar in reply to MLWFP]

Hi, it is URSODIOL 250. I am in USA FL

[ninjagirlwebb]

agree with        Researchfreak should get guidance from a hepatologist who specializes in pbc. I read alot of literature on pbc since my diagnosis and this is the only time I’ve seen your issue documented, must be rare. Nevertheless sounds like you might have an allergic reaction to the urso.

Since you are in the US, don’t think it would be too difficult to get a hepatologist to see you if you are in a major city.

Also why would you not just see a hepatologist for this condition instead of a pcp? I see my hepatologist every 3 months and he sends his notes, my lab results to my pcp. I only see the pcp once a year and as needed. Also the hepatologists would know what pbc specific tests to do for pbc and the frequency depending on your particular situation.

Some of the tests:

1) Blood labs (which your pcp is already monitoring), should also get vitamin D levels checked

2) Liver Sonogram

3) Ensure you still have immunity against Hep B. If not restart the vaccine series.

4) Dexa scan - to establish a baseline for bone density as pbc patients are susceptible to osteoporosis

5) Fibroscan - to assess liver elasticity and scarring

6) Thyroid check - as most pbc patients have thyroid issues as well

7) Cholesterol levels - my hepatologist suggested for an increase in my statin dosage, but he also said to consult with pcp as well. I consulted with pcp and cardiologist. But I disagreed with the cardiologist on the dosage as she wanted me on 40 mg. Meanwhile I was on 10 mg prior. So I decided to only go up to 20 mg to see if that normalizes before stepping up to 40 mg. Discuss my approach with hepatologist, he said you are good with that reasoning. Anyway I didn’t need the 40 mg.

My point is that we all have a say in the management of our health and while we should listen to our doctors, we should also question them if what they suggest does not make sense to us. A good doctor listens and answers your questions/concerns.

Good luck and let us know how it goes.

Haley

[Juhainar in reply to ninjagirlwebb]

Hi Haley, Thank you very much for the inputs.

[ninjagirlwebb in reply to Juhainar]

My pleasure