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anyone diagnosed with PSC?

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Ulcerative Colitis
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Posted 9/20/2013 5:24 PM (GMT 0)
I've had some unfortunate results in bloodwork lately that's leading to a liver biopsy in a few days. I'm trying not to google too much until I know what's going on, but I've found psc has a strong connection with uc. Doctor said they are specifically looking for pbc or autoimmune hepatitis (viral heps are neg). Any insight? Anyone diagnosed with one of these? Or better, anyone do the biopsy and have nothing wrong (with positive ANAs and elevated smooth muscle antibodies)?
Posted 9/20/2013 7:30 PM (GMT 0)
Ive seen it mentioned a lot here but I don't have any experience with the topic myself. I hope you can find some information. There is a board dedicated to hepatitis on healingwell, maybe you could ask there?
Posted 9/20/2013 8:06 PM (GMT 0)
I will post there too. Put it here because of the strong ties of PSC to uc (not even IBD since it's less prevalent in chrons!). Surely statistics aren't failing me so badly that I'm the only one ;) Not even sure what if anything is there yet. Preparing for the worst and hoping for the best!
Posted 9/20/2013 9:36 PM (GMT 0)
Ask Quincy. She is a prolific poster and I am sure she will chime in soon.

In the meantime:
Besides the pain and discomfort from this wretched disease there are also 'extraintestinal lesions' (EIL). The most common are arthritis and skin lesions. Other EILs are inflammatory eye manifestations, kidney stones and liver disease. But supposedly there is research indicating that silymarin compounds from the herb milk thistle are effective in protecting the liver from EIL damage.

I took milk thistle when I was flaring. I had all of the extra EILs. Still take MT once in a while. This is from "Encyclopedia of Natural Medicine" by Michael Murray and Joseph Pizzorno, page 594. It is available in any book store, it is still a best seller.

"Serious liver disease (i.e. sclerosing cholangitis, chronic active hepatitis, cirrhosis, etc.) is also a common EIL, affecting three to seven percent of people with IBD. If individuals are demonstrating liver enzyme abnormalities, they should take silymarin, a group of flavonoid compounds derived from milk thistle (silybum marianum). These compounds exert tremendous effect on protecting the liver from damage as well as enhancing detoxification processes."

Post Edited (BabeintheWoods) : 9/20/2013 4:36:47 PM (GMT-6)

Posted 9/20/2013 9:55 PM (GMT 0)
Thanks, babe! Any chance milk thistle sold at regular pharmacies is worthwhile, or is this like vsl#3 is in the world of probiotics?
Posted 9/20/2013 10:35 PM (GMT 0)
Milk thistle is a simple herb like dandelion or comfrey. You can get it at any health food store or even drug stores.
Posted 9/20/2013 11:02 PM (GMT 0)
Yes, just making sure the readily available brands are good. Really appreciate it. I know my doctor would never mention an herb as helpful :)
Posted 9/21/2013 6:52 PM (GMT 0)
Hi...I can't find my ANA testing results...they might have been before I started asking for copies.

My AMA tests are positive 1:640

anti-smooth muscle AB is negative

My cholesterol is "high"

B12 is high

I found this that might be helpful regarding testing.

http://autoimmunityblog.files.wordpress.com/2012/02/liver-disease-diagnostics_orgentec-background-article_080212.pdf

I would put off the liver biopsy till after you've had an MRCP.  My only concern would be that it's invasive.  This is MY perspective on that since there can be some other side effects you might not want to deal with.   Do ALL blood tests, ultrasound, MRCP before invasive stuff.  That also and extremely means an ERCP.  If you have blockage, different scenario since that needs to be dealt with. 

My docs lean towards PBC and not PSC....I remain on URSO since I believe it's positive in keeping my liver enzymes in the normal range.  It won't hurt me...it's just expensive.   MY MRCPs haven't changed, which are a good thing. 

q

Posted 9/21/2013 7:02 PM (GMT 0)
Q what is URSO.
Thank you!
Posted 9/21/2013 7:09 PM (GMT 0)
http://en.wikipedia.org/wiki/Ursodiol
Posted 9/21/2013 7:31 PM (GMT 0)
Thanks Q! My anti smooth muscle antibodies are 25 (should be <20), ANAs +. Don't know about AMAs. They said they're looking specifically for PBC or AIH.

Obviously I'm jumping some guns by learning what all this could mean, but when I was Dx UC I had never heard of UC. I don't want to be so under prepared again.

I'll ask about MRCP first, but biopsy is scheduled for Tuesday as of now. Thanks for the info!

Would there be a definite distinction between PSC and PBC? Why is your dr leaning towards one and not sure, if you don't mind my asking?
Posted 9/21/2013 7:38 PM (GMT 0)
Per that link, my current blood results line up nicely with AIH.

Anyone know how often these things come up in blood work while on remicade but then clear up when remicade is discontinued?
I guess that's my hope, but I just finished 15 months of prednisone in July, which would have masked any symptoms of AIH, so I don't know that I trust my normal bloodwork from then.
Posted 9/22/2013 7:01 AM (GMT 0)
I'd still pass on the liver biopsy if your blood tests line up with AIH. By chance, were you recently pregnant?

I don't know what other tests would be needed to confirm...my point is that an invasive test doesn't necessarily confirm the PBC. I've seen a few on here who have had many ercp & liver biopsies and they're still unconfirmed...

The treatment for AIH I believe is pred/Imuran...so, it is interesting that all of this came up while you are on the immunosuppressing meds.

It's definitely your call.

I don't know if one can have both PBC and PSC.  The UC link is the PBC, the AMA is  positive, so that's more the continual link with PBC. 

Whatever it is that I have....it seems to be in an early state and my blood tests have been consistent with no spikes or drops.

I found this..long read (I haven't read it all), but you might find some things appropriate regarding testing and some possible symptoms. 

I've not had many of the other symptoms described, could be because I started on the URSO immediately when my enzymes started to increase and it was suspected I had one or the other.

http://www.drfalkpharma.de/uploads/tx_tocfpshoperw/U82e_8-10-09_02.pdf

q

Posted 6/10/2014 6:43 PM (GMT 0)
I've got it, but the only symptoms I have are fatigue and slight itching. My meld score is a 6 which is the best you can hope for.

Luckily, only on Lomotil.

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