After thirty years with PSC and a year and a half on Vancomycin, for the first time all my liver enzymes are NORMAL

General
21

Moonbeams,
It appears I’ve reached a plateau.
After almost three years on Vancomycin.
My liver enzymes remain slightly elevated.
I don’t feel as good as I did a year ago.
And my MRCP for a few weeks from now will more likely than not, be canceled.
Half my colon (UC), had entirely healed as of a year ago.
I have had this disease for thirty years, and the studies do show the longer you have it the less effectiveness of Vanco.
The jury is still out, for me.
Thanks for your kind wishes.
Susan

22

Hi Susan,

I am so glad that vanco is working well for you. I started vanco in October (500mg x 3) and my alk phos declined but not normalized. In February, the numbers started to go up. We increased the dose to 750mg x 3. After a month later still not significant improvement and we decided to increase again to 1000mg x 3. It has been only few days so far.

I believe this is very similar to your experience. Could you please tell me more about your dose escalation? This thing is fairly new and there is not a lot of information.

Thanks,

Jim

23

Susan, glad your colon has half healed. Having had colitis, I was not used to a colon that healed.
Jeff

24

Friends,

At the moment I’m dealing with having gotten COVID-19. It’s only a mild case (no pneumonia), says my NP, but nonetheless I’m not feeling able to focus on doing justice to answering right now. Give me a couple days.

Best to you,

Susan

25

Hi Jim, how are you doing with your vancomycin journey? I hope you are making progress and have time to share. I’m considering trying vanco again. My initial experience was over a year ago and i was taken off urso at the same time. Lfts normal on urso but my alp was. 3 x higher than normal range after a month without urson and a month on vanco. Thinking to start vanco while taking urso for uc and slowly increase dose to see if it impacts on lfts.
Very interested to hear more from you and Susan. Susan if you are reading this I really hope you are OK as you mentioned you caught covid. Thinking of you. Emma

Best wishes,
Emma

26

Hi Emma,

I still don’t have a clear direction on dosing and quite frankly I have bigger health problems at the moment. I was diagnosed with cholangiocarcinoma 3 years ago and I have been in remission after my surgery. Unfortunately it came back 3 years later which is not very common and extremely disappointing. I thought I was cured. Now, I am dealing with chemo and hoping a potential surgery in the near future. Once I catch a break, I will deal with PSC.

Keep us posted on your vanco experience. Don’t forget to get checked for the other complications of PSC. It is beyond alk phos and liver function tests. Just so you know, my PSC diagnoses happened during the cholangiocarcinoma surgery. The surgeon saw the inflammation in my bile ducts. At that time, I had perfect liver function numbers and slightly elevated alk phos (145). A simple CT scan would have put my health in a completely different trajectory. Please make sure your doc knows this disease really well.

Best wishes,

James

27

Hi James, I’m so sorry you are having to face cholangiocarcinoma again. It sounds like you are a strong determined person and I wish you all the best with your treatment. I’ll update the group when I restart the vanco journey. Take care and keep in touch with the group if you need some support. Emma

28

That really sucks! I’m so sorry for you and I hope you’ll get through it! :cry: