I was recently diagnosed with PSC in October and have been going through the whole thought process trying to cope. I am currently working towards my master's degree in epidemiology/public health, but it seems like I've been spending most of my time researching PSC and looking for any new developments rather than studying.
I'll try to keep this brief:
As most of you probably know, PSC is almost always concurrent with IBD so researchers are desperately trying to find the link. There is one drug I came across, vedolizumab, that could be promising. Has anyone else come across this? I won't get into detail on the biological mechanism for how it's thought to work, but it's recently been shown to be effective in treating IBD by inhibitng a protein (α4β7 integrin) that is found in much greater levels in IBD colon samples. By inhibiting this protein, inflammation was significantly reduced in the colon.
Now, why is vedolizumab promising for PSC? This protein, α4β7 integrin, is also found in much higher levels in the livers of us PSC sufferers. Google/Wikipedia it if you'd like some basic info. The theory is that vedolizumab would act in a similar way in the liver, by preventing inflammation.
I know there are now phase III trials looking into the safety and efficacy of vedolizumab to treat IBD in the long term, but nothing has been done to see its value in PSC. I just spoke with my GI doc and he mentioned that a clinical trial is finally being scheduled to start in a couple of months (he wasn't sure of the exact date) that is testing the effect of vedolizumab in PSC. Because I am still in the early stages of the disease, I won't qualify to join the study right away, but I would definitely recommend people to talk to their docs about this!
That's all from me for now! Do your research people -- you never know what you'll find.
refreshing to read your article, however i would like to know did you have any symthoms such as UC or IBD before diagnosis , as normally i find subjects have these issues for years before diagnosis and i am no different.
Yes I was diagnosed with UC 3 years ago and they've been keeping a close eye on my liver since my dad also has PSC. I was really bummed to hear that I have PSC but my dad is quite successful and still going strong (25 years with PSC and no transplant needed yet) so he has been my main inspiration to not let this disease control me!
I will post my findings of any more studies of interest on here.
Thank you for joining and sharing. We do appreciate it. My daughter has both UC and PSC together with Kidney Disease. I learn a lot from being on here, so look forward to your posts.
Mike, I also have a husband and a 4 y o child with PSC. Yes, Shit happens. could you tell us more about your dad and these 25 years? Is he following any special diet or taking any supplements? So, give us any keys to success, buddy!!
We will be grateful and thrilled to hear from you!
Miker123 said:
Hi all,
Yes I was diagnosed with UC 3 years ago and they've been keeping a close eye on my liver since my dad also has PSC. I was really bummed to hear that I have PSC but my dad is quite successful and still going strong (25 years with PSC and no transplant needed yet) so he has been my main inspiration to not let this disease control me!
I will post my findings of any more studies of interest on here.
Very interesting information. Thank you for sharing. Would definitely love to hear some "tips" from your dad as well. 25 years seems like a miracle of time with this disease. Amazing!