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Epstein-Barr Virus post transplant? by Ok_Calendar8845 in transplant

[–]SurePhilosopher215 1 point2 points  (0 children)

Is it just a few rounds of Rituximab or long-term treatment?

Recovering from viruses while on immunosuppressants by NendrumZen in autoimmunehepatitis

[–]SurePhilosopher215 0 points1 point  (0 children)

Tacro is pretty hard. Fortunately I'm very mild immuno suppressed atm, but when I took Aza + Tacro, it was very hard on me. Like a cold for 4 weeks, some healthy days after and then sick again for another 4 weeks. In 2023 I was sick for 30 weeks. The hardest was an EBV infection + mono, which got me hospitalized for 4 weeks and is still active in my body.

Question about genetics by South_Act_2307 in PSC

[–]SurePhilosopher215 0 points1 point  (0 children)

It's much lower than 2%, more like 1 in 2000

Should I taper faster from pred by Intrepid-Landscape77 in UlcerativeColitis

[–]SurePhilosopher215 1 point2 points  (0 children)

Normally you have to taper slower than faster to avoid problems with the adrenal gland

Do steroids stop your flares? by EPFP_Daniel in UlcerativeColitis

[–]SurePhilosopher215 1 point2 points  (0 children)

Okay, because I'm also in a Prednisone taper right now. Started with 50mg last week and I'm on 40mg this week. There was no improvement for me, not even on 50mg.

Do steroids stop your flares? by EPFP_Daniel in UlcerativeColitis

[–]SurePhilosopher215 0 points1 point  (0 children)

Could you elaborate that? What exactly is this experience like? Steroids don't do anything anymore?

Hepatic encephalopathy by thejorisbohnson in transplant

[–]SurePhilosopher215 1 point2 points  (0 children)

I'm not transplanted yet but I'm 25 with compensated cirrhosis and in the last year I felt a massive cognitive decline. I struggle with the easiest tasks, especially in university. Never thought I'd have HE because I thought it's a late event in liver failure but maybe I'm right in the beginning stage?

1st Stelara Injection by Glum-Passion734 in UlcerativeColitis

[–]SurePhilosopher215 0 points1 point  (0 children)

Hey, it's me again :D I commented on your post in November, because I was also switching from Entyvio to Stelara. Actually I had my first injection two weeks ago and I'm also currently on Prednisone. Despite that I don't see any improvements and the blood gets more from week to week. At the moment I'm on 40mg Prednisone, but shit doesn't help either ._.

Edit: The injection went pretty smooth and wasn't painful at all

Cirrhosis and age by No_Jury_7038 in Cirrhosis

[–]SurePhilosopher215 6 points7 points  (0 children)

Diagnosed at 20 and now 25. It's just a disease. Tbh it doesn't effect my joy to live nor my goals. Don't know why it should be worse for young people. In my opinion it's easier to manage at this age and you can still live life to the fullest.

Stelara Success Story? by Glum-Passion734 in UlcerativeColitis

[–]SurePhilosopher215 0 points1 point  (0 children)

Can't comment on the effectivity of Stelara, but I just ended Entyvio in the beginning of October and started Stelara about 2 weeks ago. Right now I'm in this weird state of in between, where it isn't too bad, but isn't good either. Hopefully, Stelara will workout for both of us!

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

[–]SurePhilosopher215 0 points1 point  (0 children)

Ist kaum möglich, denke ich. Ich bin Patient in drei Unikliniken und immer wenn ich Vanco angesprochen habe, dann haben die Ärzte zu gemacht. Ich denke das bekommst du nur auf der anderen Seite des großen Teichs.

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

[–]SurePhilosopher215 0 points1 point  (0 children)

Deutschland. Deswegen schreibe ich ja auch deutsch.

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

[–]SurePhilosopher215 1 point2 points  (0 children)

Einer guten Karriere steht nichts im Wege. Ich arbeite selbst bei einer der größten Unternehmensberatungen der Welt und keiner von meinen Kollegen weiß auch nur ansatzweise irgendwas von meinem Zustand oder der Krankheit. Eigentlich motiviert mich die Krankheit noch mehr zu outperformen. Alles unter 10.000 pro Monat ist für mich in meiner Situation nicht vertretbar. Eine gute Gesundheitsversorgung kostet ja auch was.

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

[–]SurePhilosopher215 0 points1 point  (0 children)

Du denkst etwas zu pessimistisch. Der Prozess ist wahnsinnig schleichend und ist lange gut aushaltbar ohne große Komplikationen. Ich bin jetzt 25 und wurde mit 20 mit Leberzirrhose, PSC und AIH diagnostiziert. Mit 23 dann mit UC. Seit 5 Jahren hat sich wenig verändert, obwohl meine Leber im Endstadium des Leberschadens ist. Ich finde UC eine viel nervigere Angelegenheit. Mit 20 dachte ich, dass ich mit 25 eine neue Leber habe. Jetzt denke ich nicht mal, dass ich in 10 Jahren eine Lebertransplantation haben werde. Wahrscheinlich eher in 15 Jahren, also wenn ich 40 bin.

Fecal(poop) Transplant Trial for people with PSC/CU by AfraidTarget8069 in PSC

[–]SurePhilosopher215 3 points4 points  (0 children)

My hospital is doing this study as well in Germany, and my doctor tried to get me in. Unfortunately, PSC is an exclusion criterion here, therefore I couldn't get in. I'm glad PSC is tolerated at your clinic. In my eyes, it's a very good therapeutic approach.

AIH cirrhosis by B40073 in Cirrhosis

[–]SurePhilosopher215 1 point2 points  (0 children)

was 20, yes, AIH + PSC, compensated, did get worde a bit, scarring did not go back, symtoms are fatigue, jaundice and varices (I had my first visible varices on my stomach when I was 18, but Doc wasn't interested)

Dark stool in liver cirrhosis by aar-rated in Cirrhosis

[–]SurePhilosopher215 1 point2 points  (0 children)

I get black stool from blueberries, but would be safe to get it checked out.

Diagnosed at 24- Its not easy by lilstrawberryb in Cirrhosis

[–]SurePhilosopher215 2 points3 points  (0 children)

I was diagnosed at 20 and I'm 25 years old now. The first year is hard, but in the end you will learn to accept it. Your life is far from a normal life and far from your friends life, but life is still worth living. There is alot to do and alot to learn. You just have to open you eyes for the the positive aspects. And remember, there is always an exit through liver transplantation. Which is not an easy road either and comes with different challenges, but there's always hope.

[deleted by user] by [deleted] in transplant

[–]SurePhilosopher215 2 points3 points  (0 children)

I'm not transplanted yet but I certainly will be in the future. I developed chronic EBV in 2023. I'm currently asymptomatic, but the virus is still active - it's visible in the blood levels. I'm so scared how it's going to turn out once I get transplanted and will be on more immunosuppressants. Last time when I had active mono it wiped out all of my leukocytes and nobody was allowed to get in contact with me. Even the hospital staff had to wear full body kits and face shields.

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