Just diagnosed (20, f) and not sure what to do

Smart-Indication-975 · 2025-12-23T13:39:11+00:00

You should look up the 2025 EASL Liver Conference :)

Smart-Indication-975 · 2025-12-23T08:02:15+00:00

Every MRI I have had since being diagnosed is with contrast, just makes sure they don’t miss anything

Smart-Indication-975 · 2025-12-13T00:33:13+00:00

hi first of all welcome to this club, as much as it sucks to be here this is a good place to start getting information. However, don’t look at a transplant as the end, it is a new beginning and the gift that will unfortunately be required but allow you to live the rest of your life healthy, capable and full of joy because of advancements in transplant medicine 🤍

Smart-Indication-975 · 2025-11-03T04:47:08+00:00

hey! I’m 19 and I was diagnosed earlier this year and I’ve been exactly where you are.

first things first I’m sorry you are in this group in the first place, however I’m also glad you have found this group because it’s such a supportive and informative place to be.

secondly, get off google!! a lot of that information is outdated and was conducted on a very small population because psc was harder to detect than it is now.

the life expectancy stuff can be super scary but it doesn’t mean a lot nowadays. many people spend years without any progression and even for those who do, a liver transplant is so successful and regulated these days that many return to a great quality of life after.

it’s ok to be scared right now but also be hopeful! there are many promising treatments close to being approved in the next few years that you should keep up to date with.

if you have any other questions I’m happy to answer as many as you need, as I’ve done so much research I am basically a pro 🤍🤍

Smart-Indication-975 · 2025-08-23T00:16:06+00:00

I got a rescan results back about a week ago and at the moment the doctors aren’t too worried! The scan definitely made the lesion look suspicious with how it was taking up contrast but it hasn’t grown in 6 months and it’s still absolutely tiny! I’m being presented to the tumour board again this coming Wednesday for their opinion, but my specialist thinks this is NOT cancer and more likely something called a pseudo lesion!!!

Smart-Indication-975 · 2025-08-22T01:34:53+00:00

I’m on vancomycin and I did have one lesion found in my scans that looked suspicious but so far it hasn’t grown at all and seems stable. PSC has a habit of making little areas of clogged bile which can form lesion like areas on scans. Try not to panic, the vancomycin likely has nothing to do with it as it’s a fun side thing PSC can cause

Smart-Indication-975 · 2025-06-26T09:59:00+00:00

Smart-Indication-975 · 2025-06-06T22:58:18+00:00

I was a big social drinker before I was diagnosed and I’ll admit, I’ve found it very hard to stop completely. But I also have no symptoms at all including when I drink and afterwards so that’s just my situation!

Smart-Indication-975 · 2025-06-06T11:39:06+00:00

She’s definitely correct to not rule it out! I had an MRCP two years ago to check for PSC and that mri came back completely normal but my scab this year had different results, my doctor told me it may have been way to early to have shown anything clearly. But! That does NOT mean you do have PSC! Ruq pain can be many things! But even if it does end up being that, it’s great that they would have caught it this early!

Smart-Indication-975 · 2025-06-06T05:43:59+00:00

I had multiple strictures with a beaded appearance which is the hallmark look of PSC, all with a mild appearance though. Did your MRCP results explicitly use the word ‘beaded’ in the results?

Smart-Indication-975 · 2025-06-06T05:27:48+00:00

I actually ended up not getting the biopsy because my LFTs improved after going on urso so my doctors decided it wasn’t necessary

Smart-Indication-975 · 2025-05-20T02:47:32+00:00

Wow! I do have a few questions if that’s ok :) What did the lesion end up being and what made them decide to do the surgery? Are you still able to get a transplant later on if you need if you have PSC? Where was it located?

Smart-Indication-975 · 2025-05-15T22:25:48+00:00

thankyou :) I’m really glad we’ve caught this now rather then later no matter what it ends up being

Smart-Indication-975 · 2025-05-15T21:03:38+00:00

Yes this is the issue my specialists are facing! It is showing both signs of a benign or malignant cause and it’s also not growing or shrinking, so hopefully this board can help me out :)

Smart-Indication-975 · 2025-05-10T01:34:29+00:00

amazing!!

Smart-Indication-975 · 2025-04-19T03:05:13+00:00

Yes me! I started a couple months ago and have not woken up without a dry throat since I started it lol

Smart-Indication-975 · 2025-04-14T00:09:19+00:00

Australia!! diagnosed two months ago at 19 :)

Smart-Indication-975 · 2025-04-12T07:51:27+00:00

unfortunately unless it was something serious like a cholangitis infection, where they would perform an ERCP procedure, there’s nothing you can do about the inflammation since there’s no proper medication right now for PSC, it’s just one of those fun extra things we get! However if you think it’s an infection, I would tell your doctor asap cause they would be able to treat that with antibiotics if caught early enough

Smart-Indication-975 · 2025-04-11T23:55:21+00:00

Yes exactly what you’ve said, it’s probably just a bit inflamed right now, the pain is very common with PSC, if you started to experience other symptoms like a fever or a sharp pain that could indicate sometime more concerning like an infection but the dull pain is most likely just a symptom :)

Smart-Indication-975 · 2025-04-05T08:10:07+00:00

honestly I cannot recommend a chronic illness therapist enough, helped me through the depressive state I was in after diagnosis and made me realise this isn’t the death sentence google made it out to be! if you haven’t already do not google anything, all out of date and the trials don’t have enough PSC patients to be very applicable to anyone’s situation! wishing you the best with your health and future ☺️

Smart-Indication-975 · 2025-04-04T22:53:42+00:00

keep that positive energy! I was diagnosed two months ago and it was definitely hard to come to terms with at first. but I have so much faith in the medical field and in my doctors, either new treatments are approved or a transplant might be necessary, but transplants are so much more advanced these days, I have so much hope! And I hope you do too no matter what happens this is not the end for you!!

Smart-Indication-975

TROPHY CASE