As I’ve mentioned before I don’t know much about PSC, everything I’ve learned has been from reading the discussions. I found this from my visit at mayo. Even though he mentioned PSC he also said “the outcome was quite good” I have an app with my doctor and I was wondering what should I be asking? I get labwork every week but never hear about the results which I’m assuming its good , they have also lowered my medications. What do you suggest ? Could this be good ? Is there a possibility I don’t have PSC?
28-image.jpg (248 KB)
This is the photo please read
AIH/PSC overlap is a bit of a different animal than plain PSC. People with AIH/PSC overlap tend to last a lot longer before needed transplant when compared to plain PSC patients. This is mainly because there is a non-transplant treatment plan for AIH/PSC (corticosteroids, immunosuppression, and Urso) where there is no consensus on an effective treatment plan for plain PSC. All in all, the outcome with AIH/PSC is generally better than with PSC alone.
A more conclusive test(compared to biopsy) for PSC would be an MRCP. Even if PSC is only suspected, it wouldn't hurt to get one annually just to make sure nothing suspicious (cancer) is cropping up.
I recommend keeping a personal record of your test results and getting to know what they all mean. Doctors are human too and it is not at all unusual for them to miss things. If you are familiar with your conditions and history, you can be a second set of eyes to make sure nothing important slips though the cracks.
I did have an MR elastogram with full liver. I do need to get familiar with my numbers since many of them are in red I have no idea why? Thank you for taking the time, and to explain this a little better!
The elastogram and MRCP are two different tests. The elastogram measures the overall condition of the liver to determine how much cirrhosis there may be. The MRCP focuses on taking pictures of the bile ducts of the liver. PSC creates scar tissue in the bile ducts making them appear "beaded" in the pictures.
Did your doctor prescribe Urso?
No , at this time I’m only taking prednisone and 50mlg of azathioprene. They lowered it from 100 to 50 because my white cells were getting enlarged due to Aza. I will
Ask to get an mrcp and also about the medication you mentioned
My husband was just diagnosed with AIH. His PSC was found in Jan 17 but it is either moving fast or has been lurking around the edges for a while… I was curious about the course of therapy you described above, corticosteroids,
Immunosuppressants and Urso. So far our doctors at Cornell NYC have only discussed steroids. Could you tell me where you received the above course of therapy? Many thanks jtb.
I don’t personally have AIH overlap and treat my case of PSC with an antibiotic. I believe I pulled the information from this study: https://www.ncbi.nlm.nih.gov/pubmed/15984974/ as well as a 2008 overview of overlap syndromes: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716591/. Note that some of this information, such as the recommendation for high-dose urso, is dated and no longer followed. I believe there may be more recent case studies, but they tend to be tiny given the population of those with overlap syndromes.
For PSC, urso continues to be controversial with a seemingly even split of doctors prescribing and not prescribing. This is likely mirrored with PSC/AIH treatment plans as well.
1 Like