Newly diagnosed PSC...looking for info...

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Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 10/24/2009 4:23 PM (GMT -7)   
On top of the Crohn's...yesterday I was diagnosed with Primary sclerosing cholangitis (PSC) via ERCP. BTW, still hurting like H-e-double toothpicks from the opening of the bile duct, which I'm told was clenched shut and didn't want to open.

I've been looking, but haven't really seen any newer posts (used the search tool, got lots of 2007 posts) regarding PSC. Not sure if this is the right place, cuz I hear that this is more common with UC. So I'm just wanting to know some info, cuz the stuff on the Mayo page, etc, is kinda depressing. Even the doc said, "Good News, your liver is not damaged enough to need a transplant?" WHAT?!?...GOOD NEWS...yeah, I know it could be worse...

So even though I've lived with Crohn's for the last 10+ years, I'm a newbie in the world of PSC. I have questions...Like, how fast is progression? Am I going to be able to get rid of the pain in my side/chest? What OTC's/herbal remedies should I avoid, and or use?

This terrifies me...so any help, even to show which forum is best, would be so greatly appreciated.
"The earth laughs in flowers"


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/24/2009 4:55 PM (GMT -7)   
Wow Becoming undone I have no advice, just I am so sorry to see that you are suffering from this.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 10/24/2009 8:25 PM (GMT -7)   
thanks Navy. I know PSC is kinda rare even for crohnies...but I'm hoping, praying there are better treatment options...cuz "The definitive treatment is liver transplantation." and that really bites some biguns...not sure what to expect with this. Haven't turned yellow yet, thank goodness...
"The earth laughs in flowers"


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/24/2009 9:50 PM (GMT -7)   
Sending huge hugs your way... I'm so upset to hear that you're in this much pain.

I'm sorry, but I don't have any info to share either.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Keeper
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Date Joined Jun 2008
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   Posted 10/24/2009 11:19 PM (GMT -7)   
Not much joy here, either, but there is some progress. A rather indigestible article on PSC seems to indicate that the liver recruits T cells that are normally only found in the gut and skin in Crohn's. The reason for this aberrant situation seems to be due to a combination of infiltration of bacteria or bacterial debris into the liver and an autoimmune response targeting both liver cells and other immune system cells. The autoimmune response is suggested to be due to cross-sensitivity of the immune cells for both common bacteria and various other self cells (liver etc.). The T cells cause inflammation and general damage to the liver. Other researchers report that neither bacterial overgrowth nor unusual intestinal permeability were observed in PSC, so the other ideas need more clarification or revision. The main problem in the short run is the damage to the bile duct. I would think that enteral nutrition might help clear bacteria from the SI and allow the liver to rest. This is simply blue skying since there is no recognized treatment for PSC. There may be a role for antioxidants (vitamins A, C, E and coenzyme Q10) as well since one of the immune system molecules targeted by autoimmunity is catalase - a primary protective enzyme that breaks down reactive oxygen species.

I don't know if you are technically oriented, but just in case, here's a link: Theimmunobiologyofprimarysclerosingcholangitis

PV
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Date Joined May 2006
Total Posts : 1177
   Posted 10/25/2009 9:34 AM (GMT -7)   
I am really sorry that you have received this diagnosis. ((Hugs))

When my husband was previously diagnosed with Ulcerative Proctitis, I used to post on the UC board, and a person on that board (username quincy) also was diagnosed with PSC. I think she's a pretty frequent poster on the UC board. Also, she seems to be someone who is very knowledgeable about both IBD and PSC, and she can probably help with treatment options etc.

I suggest posting on the UC board and asking for her help to guide you through the procedures and treatments, etc. I hope you find a way to keep it in check.

Hugs,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 10/25/2009 7:51 PM (GMT -7)   
Thank you all. Yup, Keeper, I am a science nerd, so I like the info. Thanks PV too, It does help to talk and share experiences with other people.

Oh Keeper, on that T-cell thing...it totally makes sense. I'm also one of those, with immunizations, my Crohns gets worse. I've had some pretty severe reactions to vaccines, and belive me, working in labs and being in the Navy, I've had my fare share. Been immunized from rabies (did testing in lab) to yellow fever. If I remember my immunology correctly, T cells are involved in the cell mediated response, which means that these cells turn on those little macrophages that, if crazy enough, will eat anything. (Even still, I believe in immunazations, though I think they have made this DD worse in the long run)

Oh, I do have damage to the bile duct. Some of the pain is from them opening the duct akin to roto-rootering. My liver has been enlarged for some time...now they know why.
"The earth laughs in flowers"


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/25/2009 10:14 PM (GMT -7)   
The particular variety of T cell in question seems to be a memory cell - it retains the reaction to the particular bacteria/protein that it is sensitive to for years. They really don't know why the liver produces attractant molecules for those T cells and I don't like guessing when so little is known about the process. But in the absence of real info, there are a couple of possibilities. One is that the bacteria have entered the hollow spaces of the liver and triggered a reaction by the mast cells which eventually results in the recruitment of those T cells. I really don't know how they could stop the inflammatory process unless it was by the use of anti-rejection drugs. Unless you find someone who is doing trials for PSC, you are likely not going to get much help from the medical community. They just don't have a useful treatment - the one that they were using was recently shown to cause other problems and so it has been discontinued. That is why it might be useful to try antioxidants. One of the causes of damage is oxidation from reactive oxygen species because of the inhibition of catalayse - which normally breaks down ROS and protects your tissue. There are other advantages as well. Vitamin E is known to weakly inhibit the production of Immune globulin E which is a sensitizing agent that primes the mast cells to react to the antigen that resulted in the creation of that variety of IgE. It is used with some success in the control of Crohn's skin rashes (anecdotal) and helping control asthma - both due to mast cell activity.

You might want to ask your doctor about trying something fairly harmless. A simple molecule available without prescription is investigated for moderating autoimmune problems here: The Journal of Biological Chemistry

The same material was the subject of a trial in Great Britain which is summarized here: Alimentary Pharmacology & Therapeutics
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