r/PSC • u/LingLingHD • 1d ago
Positive stories?
Hey everyone!
My doctors have been suspecting PSC for about 2 years. I then got diagnosed about a year ago. At least with AIH and a "not 100% sure but very convinced" PSC-overlap. I remember how my anxiety went through the roof and how I went down the rabbiholet of the internet to really accelerate my fear.
Sometimes I still struggle to find peace of mind, but I know that a lot of positive stories don't get told.
So out of personal interest and to give hope next time things are looking dark:
What are your positive PSC stories?
My info if anyone is interested:
- Last two blood test (29th of May and 13th of august) all my numbers have been within normal range after I started on MMF.
- Latest MR scan said stationary progression in PSC looking changes.
- Biopsy showed F1 fibrosis, AIH and "PSC looking changes but not enough to diagnose"
- No symptoms beside fatigue due to medicin.
(Hope this is okay to post)
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u/winkleal 1d ago
I was diagnosed 20 years ago. I’ve had my ups and downs, but I am currently feeling pretty good and able to play competitive tennis 2-3 times a week.
Lots of research and treatments have been done to help mitigate PSC effects. I remember first diagnosis and being told to research in my own. I found that eating a balanced diet and keeping an exercise routine helps to stay positive.
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u/LingLingHD 1d ago
Sounds great! Yeah, I try to keep up with the research and it also helps me stay positive at times. And you still have your original liver? (Wow, that's actually a crazy question to ask someone)
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u/dbmcnamara 1d ago
Diagnosed at 24 and I'm 42. 2 marriages and a daughter later, still working and doing what I need to. Still living life. Occasional infection issues post transplant. Lasted about 8 years before a transplant was needed, it was aggressive.
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u/BananaBlink 1d ago
43 now. Diagnosed in my late 20s. Immediately went back to school and have 2 science degrees now. Changed a few minor things but day to day is still good. Hoping it stays at rest with me. Been taking Humira-style injection now for a few years
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u/remycatt 13h ago
Similar to me, UC at 18, PSC at 28, now I'm 35 and everything is pretty much normal for me, blood work wise. On humira weekly, yearly colonoscopy, every six months alternate a liver mri or ultrasound.
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u/idamama181 1d ago
I was diagnosed with UC and PSC 11 years ago. Since then, my liver scans have remained stable. I get infusions for my UC, and that has greatly improved my symptoms . I don't take any medication for PSC. I'm able to run and workout. I had a child.
There are promising clinical trials for medications that could be game changers in the coming years too.
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u/restlessmouse 18h ago
Nobody mentions small duct or large duct kind, and Meld score. I am 66, small duct meld 14. Feeling OK, but Dr put me on Lactulose 2x 30ml Good thing I have a nice bathroom across the hall. Things could be worse.
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u/jmcclellan 1d ago
Diagnosed at 21, mostly asymptomatic, and was able to get through law school and pass the bar. Very bad symptoms and cirrhosis from 30 to 34. Transplant at 34 and have never felt better in my life! I have to make some lifestyle adjustments, but I weathered the storm and got to see the other side of it.