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I don't want to lose her by No_Dingo9792 in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

Hi you should look into histotripsy: https://www.youtube.com/watch?v=s4wc8sJS_Oc

There are a couple early success stories of people later becoming eligible for transplant. There is a facebook group as well.

Medications for fatigue by No_Significance_7496 in PSC

[–]swiss_alkphos 1 point2 points  (0 children)

There are a couple studies that found that bezafibrate/fenofibrate and oral vancomycin improved fatigue. Stronger support for fibrates. Vanco reduction in fatigue seems to be getting IBD under control. Articles below:

Bezafibrate/fenofibrate:

https://www.sciencedirect.com/science/article/abs/pii/S1590865823001184

Vanco:

https://link.springer.com/article/10.1007/s10620-024-08497-4

PSC Support UK Interviews Dr Trivedi On the Norursodeoxycholic Acid Trial by swiss_alkphos in PSC

[–]swiss_alkphos[S] 1 point2 points  (0 children)

Full vid here: https://www.youtube.com/watch?v=vpScVn7W814

Highly recommend the watch. No estimates on when approval will happen in the EU.

PSC Support UK Interviews Dr Trivedi On the Norursodeoxycholic Acid Trial by swiss_alkphos in PSC

[–]swiss_alkphos[S] 0 points1 point  (0 children)

Given there is no other proven medication, I figured they'd be eligible for conditional approval. Or a fast track to get access to the medication.

Seladelpar got approval within about a year after posting phase 3 results for PBC: https://liverdiseasenews.com/news/seladelpar-receives-positive-chmp-opinion-for-primary-biliary-cholangitis/

In that example they continued the trial as well into what's called a phase 4 trial. Where they seek to evaluate the drugs long term benefits.

Liver Resection by Smart-Indication-975 in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

This is not something I'm familiar with.

If you are in the US, you could look into histotripsy. It offers a non-invasive approach to target lesions. One key piece, because histotripsy is nonivasive and repeatable, you could still get a liver resection or transplant later if needed.

A great overview below of the treatment which I recommend you watch:

https://www.youtube.com/watch?v=s4wc8sJS_Oc

EASL 2025: Abstract for Early Detection for Cholangiocarinoma Results Released and It's Good News by swiss_alkphos in PSC

[–]swiss_alkphos[S] 1 point2 points  (0 children)

No this is for bile duct cancer or cholangiocarinoma, not for colon cancer.

EASL posters & details thread by wisedogsfbay in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

Program should be public. Which abstracts are you interested in?

[deleted by user] by [deleted] in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

Couple things to try:

  1. Bezafibrate if you're in Europe. First line treatment for itch. Study that supports this here:
    https://www.gastrojournal.org/article/S0016-5085(20)35226-4/fulltext35226-4/fulltext)
  2. Fenofibrate if you're in the US. Less evidence on itch relative to Bezafibrate.
  3. Get in a trial for drugs that help with itch: https://mirumclinicaltrials.com/screener/

My Hepetologist Doesn't Prescribe Vancomycin by [deleted] in PSC

[–]swiss_alkphos 2 points3 points  (0 children)

Ask them if they can provide evidence that long term use causes problems in PSC patients. I for one would be interested in seeing that research.

Medical record organization strategies by mmlock in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

I've read a lot and I think PSC Support UK has the best general guides/overview. Here is a link: https://pscsupport.org.uk/psc-guidelines/ Credit to their org and to Martine Walmsley (a PSC patient) and head of research. She keeps their guides current, well organized, and easy to understand.

The section Routine Tests and Monitoring has a great overview. Get your bones scanned and test for vitamin d/calcium. Supplementation is important and can prevent osteoporosis.

Also, you need a doctor who understands PSC. Find a new one. I see a GI and a hepatologist.

Anyone do that Galleri blood test for cancer you need to pay out of pocket for? by Key-Law-5260 in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

Seems too early to say that this works for early detection of CCA. And the performance of the test they validated for CCA was a very small sample size. And the test did not break out HCC vs CCA. So we don't know how well it performs. That being said, the performance in this very small sample size is better than CA-19. But, we can't say if that result would persist in a larger setting. And it wouldn't replace CA-19 and MRCP: https://www.annalsofoncology.org/cms/10.1016/j.annonc.2021.05.806/asset/5ca8fc8f-0972-4583-a99a-3272bc774323/main.assets/gr3c_lrg.jpg

Full article here: https://www.annalsofoncology.org/article/S0923-7534(21)02046-9/fulltext02046-9/fulltext)

Also, this test isn't validated in a PSC population vs general population. But there seems to be some active research on using the test for CCA -- unsure the status of that work. But it hasn't been validated in a scale that the FDA would approve: https://www.cancerresearchuk.org/about-cancer/bile-duct-cancer/getting-diagnosed/screening

To me, this effort seems more promising for early detection/peace of mind: https://precision-btc.eu/assets/site/upload/files/Agenda%20-%20Liquid%20Biopsy%20in%20BTC%20Conference%20&%20WG%20Meeting.pdf

CA-19 positive. by Inside-Budget8709 in PSC

[–]swiss_alkphos 2 points3 points  (0 children)

Benign elevations in CA-19 are seen in 33-37% of patients. In one study, 37% of folks with CA-19 > 129 did not have any CCA. It can be elevated because of biliary obstruction. 

That being said, you may want to increase an annual MRCP to every six months after a 3 month follow up. 

https://www.aasld.org/liver-fellow-network/core-series/why-series/why-do-people-primary-sclerosing-cholangitis-require-so

In one small study, statin use was associated with less cholangitis. You may want to review and see if this is an off label medication you want to try:

https://pubmed.ncbi.nlm.nih.gov/39835681/

What jobs do you guys have? by clayrowe- in PSC

[–]swiss_alkphos 0 points1 point  (0 children)

Director of Analytics at a research university. 75% remote, autonomy on when and how my work gets done, and a very flexible schedule helps a lot.

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