I know how she feels.. I have the same problem with itching..
August 9
Hi Mmphilly,
Because Tacrolimas lowers your immune system, is experiencing symptoms,it’s best that she report the issue to her physician or transplant coordinator.
There may be an alternative drug that will help ease her symptoms.
Sleep interruptions, no sleep is very hard on her mental health as well. This can cause depression, hallucinations, and delusional thinking. (Have had it happen before)
My husband’s transplant coordinator is very clear that any and all changes or symptoms they should know about.
He stressed that’s why they get into medicine to begin with, to help people live their best life.
I pray she finds relief soon.
August 5
Nighttime itching is one of the most exhausting parts of living with PBC — your daughter is definitely not alone in this struggle. Since she's already on Livdelzi and Tacrolimus, it's really important that any new treatments are cleared by her doctor first to avoid interactions.
Here are some options her doctor might Show Full Answer
Nighttime itching is one of the most exhausting parts of living with PBC — your daughter is definitely not alone in this struggle. Since she's already on Livdelzi and Tacrolimus, it's really important that any new treatments are cleared by her doctor first to avoid interactions.
Here are some options her doctor might consider for the itch:
- Cholestyramine — the first-line prescription treatment for PBC-related itch; it binds bile acids in the gut and removes them from the body. Important note: it should be taken 1–4 hours apart from her other medications to avoid absorption issues
- Rifampin — a second-line option that helps reduce itch signals sent to the brain
- Naltrexone — an opioid antagonist that may reduce itching by blocking certain receptors
- Sertraline — an SSRI that has shown some benefit for PBC-related itch in small studies
- Sedating antihistamines (like Benadryl) — won't stop the itch itself, but the drowsiness may help her sleep through it There are also some simple at-home strategies that can help ease nighttime itching:
- Use cool or lukewarm water when showering — hot water dries skin and worsens itch
- Choose fragrance-free soaps and moisturizers
- Wear loose, soft clothing to bed
- Apply a cool, damp cloth to itchy areas for relief
There are also newer medications in development, like linerixibat (an IBAT inhibitor), which is currently under FDA review with a decision expected in 2026. Her doctor may know if she's eligible for any clinical trials in the meantime.
The most important step is looping in her care team so they can tailor a plan that works safely alongside her current medications. 💛
August 1
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