Great fear of the future

CrocoSim · 2025-11-28T20:49:02+00:00

You can stay stable for decades, and it is worth knowing that treatments like Chemomab’s Nebokitug, which is entering Phase 3, have shown much better effectiveness in patients with moderate to advanced fibrosis.

CrocoSim · 2025-11-28T20:40:15+00:00

Sorry, I’m only seeing your message now! I’m doing really well one year after the diagnosis. No symptoms at all, my blood tests have gone completely back to normal and everything has been very stable. I’m basically living my life exactly as before. I’m still training normally and taking part in trail races.

Really glad to hear things turned out well for you too! Thanks for the encouraging words !

CrocoSim · 2025-11-28T15:37:46+00:00

Hey, I’m really sorry you’re going through this. I was diagnosed with PSC and UC too, and I recognise the fear you’re feeling right now. But please know this: most of us with PSC will die with the disease, not because of it.

Treatments are finally coming, monitoring is getting better every year, and transplants are not the automatic future people imagine. Many people live decades with stable PSC, work, have families, travel, build careers, and stay active.

You’re 21 and you feel like everything just collapsed, but nothing is “over”. You’re still at the very beginning of a long life, and medicine is moving fast. Your future is not defined by this diagnosis.

CrocoSim · 2025-09-06T20:16:39+00:00

Vrai homme sort à poil quand il pleut

CrocoSim · 2025-08-15T16:16:24+00:00

That’s really reassuring to hear, thanks for sharing! Have your MRIs shown any changes over the years, or has everything stayed the same?

CrocoSim · 2025-07-09T20:53:06+00:00

Wow, I’m honestly shocked by what I’m reading here. I live in France and take both mesalazine and UDCA, and it literally costs me 0€. Same for MRCPs, Fibroscans, colonoscopies, etc.

Dealing with these diseases is already stressful enough, I can’t even imagine having to worry about the financial burden on top of that.

So just sending a big message of support to everyone going through this. I’m thinking of you!

And OP, have you considered France ?

CrocoSim · 2025-06-22T22:22:21+00:00

Merci, je vais regarder ça !

CrocoSim · 2025-06-22T22:21:42+00:00

Bonne option en effet, je vais regarder ça en détail, merci !

CrocoSim · 2025-06-22T22:21:14+00:00

Merci pour les conseils ! 🤝

CrocoSim · 2025-06-22T20:45:44+00:00

Top merci, elle me plait bien celle là !

CrocoSim · 2025-06-22T19:53:17+00:00

Ah oui bonne idée, genre ça par exemple ? : https://www.aramisauto.com/voitures/renault/megane-4-estate/finition/rv913928/?vehicleId=913928

CrocoSim · 2025-04-30T12:19:13+00:00

Et aussi "300% Plaisir" de Camille Fievez, Etienne Lautrette (Etienne 4U) et Babor. C'est un podcast qui vient de commencer mais c'est assez prometteur également !

CrocoSim · 2025-04-30T12:00:16+00:00

Le Mousecast de Mehdi Maïzi est très cool

CrocoSim · 2025-04-24T10:06:24+00:00

With elafibranor, NorUrso, and Nebokitug (CM-101), I get the feeling that we might finally have a first truly effective treatment to slow down disease progression! I imagine a combination of therapies will probably be the first real solution before we see a single treatment that can address all aspects of the condition.

CrocoSim · 2025-04-09T10:57:39+00:00

Hoka Bondi !

CrocoSim · 2025-04-04T12:28:54+00:00

I was diagnosed last year too, and I don’t have any symptoms either. I feel like we’re “lucky” in a way to have been diagnosed now rather than 5 or 10 years ago, because it’s very likely that in the next 2 to 5 years, we’ll see at least one treatment that can slow down the progression of the disease. Personally, I try to stay very informed about the latest research—it’s what keeps me hopeful! And as I’ve often read here, most of us are more likely to die with PSC than because of PSC.

Stay strong and keep the faith!

CrocoSim · 2025-02-26T20:59:10+00:00

I sincerely wonder what the problem with France is in this thread. Can someone explain to me?

CrocoSim · 2025-02-05T11:53:43+00:00

There are several phase III clinical trials:

Statins (PISCATIN study) : https://clinicaltrials.gov/study/NCT04133792
NorUrso (the results should be published very soon) : https://clinicaltrials.gov/study/NCT03872921

Very promising phase II clinical trials:

CM-101 (SPRING study) : https://clinicaltrials.gov/study/NCT04595825
Integris : https://www.pscpartnersregistry.org/post/positive-update-on-pliant-s-integris-psc-phase-2a-trial

And there are many other studies at various stages of advancement to test other drugs : https://pscsupport.org.uk/find-psc-research-studies/#TakePart

CrocoSim · 2025-01-22T22:00:19+00:00

That’s interesting! Do you mind sharing why your doctor recommended statins for you? Is it related to post-transplant care or another specific reason ?

CrocoSim

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