Husband has pbc.....bilirubin rise

Hello, I'm the wife madly in love and bone shaking fear filled of a husband(68yr) with pbc, totally shocked with the diagnosis 4yrs ago, cirrhosis at that time. Very shocking. Things have been manageable,...varies banded, med, started lactose and xifaxan which cleared encephalopathy. Latest blood work was shocking...bil total went from 2.4 up to 11.4, albumin stayed at 2.7. Was told to stop fenofibrate which had been recently added. We are now waiting 2wks to recheck if that could have been cause. Eyes are a bit yellow. Needless to say I'm so worried. Was told if no improvement then we are to meet transplant team at University of Minnesota. I would welcome any words.....thank you

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So good to hear of your loving devotion to your spouse. We can not predict what we will have to go through. But mindfully live each moment, day as we are granted it. Prayers sent for your peace and healing. You are not alone.

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tbili is high but Albumin is low...looks like his liver is still functioning with inflammation..let's hope he will improve in 2 weeks! 🙏🙏🙏

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Im so sry to hear. But on a good note I have learned from this site of many people who have gone through the transplant & have came away from it with shining colors😊. This is a great chance for him to get his life back. I admire how you're supportive of your husband because in my household I do not get such support. Im basically making my symptoms up as I go, or that's how my fiancee makes me feel. Im a 43 yr old mother with two girls who are 19 & 9 in Oct. Im at stage 4 with stage F3-F4 cirrhosis & grade 2 varicies which have had to be banned in five different areas since a year ago this past May. This is a crazy disease that we are dealing with. So many different symptoms yet we are all in the same boat. Best wishes & prayers for you & your husband. Please keep us posted on how you are all getting along on this PBC journey.

Stay strong❣️

Shannon

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You are such an inspiration 😊

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Thank you so much for kind words, this is such a difficult disease. And now with such a big change in numbers. He had very mild leg swelling this weekend. Not sure if and when to call. I am using every tool I know to keep in the moment and find gratitude. I've had that unraveling feeling before and would like to avoid it :-)

Again thank you

Debbie

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Normally....He shouldn't have used fenofibrate because of Cirrhosis.

I wish all the best and fast recovery!

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His dr said some have been using it to keep numbers steady and have been having success. Praying that was the cause in spike!

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Yes that's true...some PBC patients have benefits from Fibrates. This is reported in several studies. These patients are mostly the ones who either cannot tolerate Urso or don't respond or partially respond to Urso. Fibrates are then used in such cases as a single or add-on therapy to bring numbers back to better values. But usage of the Fibrates only recommend to Patients who don't yet have a CIrrhosis (I don't know the exact reason behind this).

You can also read the such warnings in the Drug leaflets.

Below is taken from one fenofibrate leaflet:

drugs.com/uk/fenofibrate-20...

"2. What you need to know before you take Lipantil Micro

Do not take Lipantil Micro if:

You are allergic to fenofibrate or any of the other ingredients of

this medicine (listed in section 6: ‘Contents of the pack and other

information’)

While taking other medicines, you have had an allergic reaction

or skin damage from sunlight or UV light (these medicines

include other fibrates and an anti-inflammatory medicine called

‘ketoprofen’)

You have severe liver, kidney or gallbladder problems"

I copied below a part of a study published online about Fibrates in general:

"Published data on fibrate use in refractory cholestasis has thus far been limited mostly to patients with precirrhosis without overt jaundice. Also, no formal pharmacokinetic studies have been performed with these fibrates in patients with hepatic impairment. Therefore, further information is needed on the metabolism and safety of fibrates in advanced liver disease resulting from cholestasis before recommendations could be made in this specific setting."

Somehow Experts gave Warnings about the usage of fibrates for Cirrhosis patients.

Hopefully your husbands case fall into this kind of complications and his values move to better soon.

Best Wishes!

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Unsure what the Fenofibrate is. I've been fighting this disease for a good while now, but have never heard of this medication. The only meds I've know to help fight PBC ate the Urso & Ocaliva. I do take the Xifaxan for the brain fog, which is definitely a huge help

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