I sure hope people are still on this thread. I was diagnosed about 6 months ago after a Covid infection that put me in the hospital for 30 days. About 14 days intubated. I did not have any health problems prior to this, in fact on my annual physicals my lft were all normal for the last 30+ years. I’m now 65 years old with all the symptoms of psc, fatigue, itching, abdominal pain, change in stools, jaundice. I had two stents put in place at the Mayo Clinic which helped with itching and jaundice. Abdominal pain is all the time. Some days unbearable.
I asked about vancomycin, but was told I don’t need that at this point. I go back in two more weeks to have the stents removed and possible put one or two back in depending on what they see.
I’m going to press the desire to try vanco, but in the mean time I need something for abdominal pain. Any suggestions?
Thank you
Rodger
Roger,
Sorry to hear you are having such a rough time. I agree that you should press for the Vancomycian. I believe it helped me get my LFT’s to normalize at a time I needed that the most. I was on 125 mg 4 times a day. That may seem like a low dose but it did the trick for me. Are you seeing a transplant hepatologist that specializes in PSC? If not, I’d ask for another doctors opinion if they refuse to prescribe it.
Do you know what the source of the pain in your abdomen is? Did you have surgery there or is it just GI pain? Not sure what pain medication to suggest. You’ll need to defer to your doctor for that one. I hope you can get relief soon.
Mark
Thanks Mark
I believe it’s just GI pain, but it stays day after day. I see a lot of people say they have abdominal pain, but they don’t take anything for it? It seems to be associated with PSC. Just hard to understand what’s going on. I’m currently at the Mayo Clinic in Rochester MN seeing a hepatologist. I’m going to message him for Monday to see what he can do.
Thanks
Rodger
Hi Rodger! I’m sorry to hear about your problems! 
It’s hard to tell what’s causing your abdominal pain through text. It could just be symptoms of the PSC or another issue. Most people with PSC also have an inflammatory bowel disease (IBD), such as ulcerative colitis or Crohn’s disease.
Regarding vanco, many of us (including me) on this forum has had success with it. However, vanco isn’t something you can wait with. In the studies that have been done, it seems that vanco works best for people in early stages of the disease. Unfortunatly, as you might have seen in this thread and on this forum, it’s quite hard to get a prescription…
/ Andreas
Hi Andreas
Thanks for your comments. You might be right about UC. The hepatologist at Mayo did not mention that. I’ll have to inquire about that. I guess with UC you can have abdominal pain, right at and above the belly button.
Thanks
Rodger
Rodger,
UC is known for causing abdominal pain, but luckily that was not one of my symptoms. Andreas is right-too many PSCer has or has had UC or another auto-immune disease.
Good luck with what you are dealing with.
Jeff
Rodger,
Have you had a colonoscopy? Even without any UC/Crohn’s, all PCS’ers should be getting colonoscopies every 2-3 years because of the increased risk of colon cancer.
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