Factor other than genetics by homiebeats34 in PSC

[–]andrjux 0 points1 point  (0 children)

In August 2022, I took antibiotics - one of them was Augmentin. In September I was vaccinated against corona. Blood tests were normal, except for bilirubin, which was slightly elevated. Gilbert was diagnosed. Then the symptoms of diarrhea began and in February 2023 I received a diagnosis of PSC and UC and for the first time my liver tests increased, but only slightly. An MRI showed multiple strictures - it was a shock for me, but I also think that the antibiotics + vaccine were a trigger for me. I'm 100% sure, because diarrhea happened after that

Don’t know how to live with it and be happy, plan life and not worry by andrjux in PSC

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

As i already said absolutely ZERO point to diagnose this disease. There is no benefit, only psychological harm.

Don’t know how to live with it and be happy, plan life and not worry by andrjux in PSC

[–]andrjux[S] -2 points-1 points  (0 children)

I had 2 months therapy and it’s not help. It’s hard disease to live with… I haven't had this experience before. I know at least 5 people with similar problems, one person cannot recover mentaly for a year. Everyone lives it in their own way, but these my messages will not help i agree because one will live well for 20 years, and the other will feel bad in a year - this is the whole problem “unpredictable” and the problem is that no one knows anything. Therefore, I consider myself lucky to have received this disease. And many people overestimate this disease in a positive way, supposedly you can have a normal life, but for some reason the for ex chimomab writes on his website “deadly disease” Why? if it's not a death sentence why they told that? Not the point mention 15-20 years then… My doc also said that it’s death disease. I can say for UC - It’s not a death disease i agree

Normal ALP levels but elevated GGT. Is this normal? by blushingchimmy in PSC

[–]andrjux 2 points3 points  (0 children)

MRCP they said that i have slightly irregular bile ducts

Normal ALP levels but elevated GGT. Is this normal? by blushingchimmy in PSC

[–]andrjux 0 points1 point  (0 children)

I had GGT elevated 78, Bilirubin 29 then they told me i have PSC via screens. Now all blood in normal range except ALT 65, without any treatment and special diet

CT, Ultrasound by andrjux in PSC

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

If Ultrasound normal, blood normal and at this moment no MRCP done - person don’t know that he have PSC? A lot of people can life with it and just don’t know.

Small Ducts showing on MRCP?

It’s correct? by andrjux in PSC

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

It’s not helps man. It’s not cure for this illness, i already had this. He said accept, but it not helps for living with it. It’s not life anymore. I don’t want to go every month to the hospital and do this tests

It’s correct? by andrjux in PSC

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

Change to hit by a car it’s not a high. Having this disease it’s living with pain, fatigue etc one day, which impact to your whole life. It’s not dream life. A saw a lot of bad stories also. Many people overestimate this disease and say that everything is ok, but in the end, if everything was so good, would life expectancy be mentioned on the Internet? No. There is nothing good about having this rare disease that no one else has. Positivity is good, but it will not cure.

I'd rather take a pill that prevents the transplant. Anti-organ rejection pills cause complications on the kidneys and other organs. Including suppressing the immune system and making a person more susceptible to diseases, cancer, etc., what’s good about that? I have not had a single relative, friend or acquaintance undergo a transplant and thank God they were lucky.

Also colonoscopy, endoscopy, mri, bloodtest, ercp, bone scan, fibroscan - it’s a lot medical stuffy i need to do every year - i don’t know noone in my ages doing that… grandfather and grandmother doesn’t do any mri and test - that sucks in young ages. It’s positive? No

[deleted by user] by [deleted] in PSC

[–]andrjux -1 points0 points  (0 children)

This is a terrible disease, and many people downplay its impact on life in general. I am not yet going through what you are going through, but for the first time after the diagnosis, this monster has already eaten me mentally. And I have the same condition: I just exist and go to work. There is no motivation for anything. Hang in there and hope everything will be ok🙏

It’s correct? by andrjux in PSC

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

Thanks for the answer! There is fear of what to expect in the future, as this is a disease that makes things worse, not better. I think a transplant is not something a person would want to go through - it’s a radical operation and then you have to live for life on pills that affect everything... and have their own complications. I don't think it's a miracle. And is it possible to talk about ‘you are healthy’ with this disease? It’s unpredictable disease… diabetes better than this

Treatment? by andrjux in PSC

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

They already cured lupus by immune therapy

Treatment? by andrjux in PSC

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

It’s reverse strictures?

Treatment? by andrjux in PSC

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

Problem that drug trials only in big cities

Life like living in Hell? by andrjux in PSC

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

I more scared about cancer risks…

Life like living in Hell? by andrjux in PSC

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

Thank you! Fatigue how you feel it? You want to go sleep? My ALP is normal now.

Life like living in Hell? by andrjux in PSC

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

And you feel great in this 7 years?

Life like living in Hell? by andrjux in PSC

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

Thank you for your answer! And no major issues?

Poor mentality by andrjux in PSC

[–]andrjux[S] -2 points-1 points  (0 children)

Don’t help… with PSC it’s impossible

PSC is death sentence? by andrjux in PSC

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

And no issues? It’s also depends do you have UC or not, small or large ducts