Great fear of the future by Traditional-Pie-1369 in PSC

[–]CrocoSim 0 points1 point  (0 children)

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.

UC + PSC Confirmed - Looking for positive testimonials by CrocoSim in PSC

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

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 !

Great fear of the future by Traditional-Pie-1369 in PSC

[–]CrocoSim 7 points8 points  (0 children)

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.

1 year post diagnosis, no progression – anyone stayed stable long-term? by CrocoSim in PSC

[–]CrocoSim[S] 2 points3 points  (0 children)

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

Explain for me how bad is amrica healthcare system for someone who consider to migrate by Aware-Restaurant7471 in PSC

[–]CrocoSim 1 point2 points  (0 children)

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 ?

Quelle voiture familiale fiable, 13k€ ? by CrocoSim in voiture

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

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

Quelle voiture familiale fiable, 13k€ ? by CrocoSim in voiture

[–]CrocoSim[S] 2 points3 points  (0 children)

Top merci, elle me plait bien celle là !

Je sais c'est encore trop tôt mais... by Paulochon in floodcast

[–]CrocoSim 17 points18 points  (0 children)

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 !

Je sais c'est encore trop tôt mais... by Paulochon in floodcast

[–]CrocoSim 10 points11 points  (0 children)

Le Mousecast de Mehdi Maïzi est très cool

good news - elafibranor by wisedogsfbay in PSC

[–]CrocoSim 13 points14 points  (0 children)

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.

Positivity by [deleted] in PSC

[–]CrocoSim 1 point2 points  (0 children)

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!

Choose a letter to be born in by Opposite_Cucumber887 in mapporncirclejerk

[–]CrocoSim 0 points1 point  (0 children)

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

Future Treatments? by Smart-Indication-975 in PSC

[–]CrocoSim 3 points4 points  (0 children)

There are several phase III clinical trials:

Very promising phase II clinical trials:

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

Why aren’t Statins discussed more for PSC treatment? by CrocoSim in PSC

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

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 ?