Is there such a thing as a PSC Flare?

[Guest guest]

Hi all,

Please forgive my ignorance, as I am still new to PSC. Is there such

a thing as a PSC 'flare', like UC/Crohn's can flare?

After a couple of months of feeling wonderful after my diagnosis--

when I had a stent in, and had started Urso and milk thistle--I have

gone downhill again in the past several months (since not long after

my stent came out, come to think of it...). My fatigue has increased

tremendously, to the point where I can barely get out of bed in the

mornings and can get nothing done; a bad depression has set in and

won't go away (which, BTW, I saw a doc and have started Zoloft for);

and I have started itching again, although it's been fairly mild

compared to my initial itching that led to my dx and stenting. Most

recently, I have been experiencing aversion to foods and drinks that

I love, and extreme nausea when I try to eat just one.more.bite. of

anything. I'm losing weight, and I have none to lose--my bones stick

out as it is.

After writing all that out, I wonder... Do I need another stent,

maybe? Has anyone had repeated/continuous stenting over the long

term?

Any thoughts? I doubt I can get in to see my hep any sooner; I'm

scheduled for the 24th for an MRCP, clinic appointment, and bloodwork.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

[Guest guest]

So should I expect to just go through these completely rotten times, on

and off, forever with this disease? Is there something that can be

done to help me feel better when I am going through all this? I've

just emailed my hep to let him know everything that's going on, and

find out if he wants to see me sooner than the end of the month.

Genevieve

> I know that I go through times when I feel worse than others and in

my

> mind I think " flare up " .

> PSC 5/07 Listed

>

[Guest guest]

The technical :-) term for this is sludgy bile, or sludge blockage. As the bile

ducts get narrower, it's harder for bile to flow freely, ultimately resulting in

cholangitis, jaundice, fever, chills, sepsis, etc.

Urso thins the bile, as does hydration - to an extent. Once the bile ducts

narrow enough, no amount of hydration or Urso will allow bile flow; especially

if there's any kind of stone formation. Intravention via ERCP, balloon

dilatation and stenting is the standard treatment. If the bile ducts cannot be

accessed for dilatation, then more extreme measures are needed:

from http://radiographics.rsnajnls.org/cgi/reprint/23/1/195.pdf

Tim B. Hunter, MD â— Mihra S. Taljanovic, MD

T-tube drain.—a type of traditional gravity drain configured in a T shape.

T-tubes are most often used for common bile duct drainage.

Sometimes dilatation and stenting is very successful, and lasting (and sometimes

not).

Arne

[Guest guest]

Genevieve,

I am so glad your hep responded to you quickly. But I am afraid the

feeling " yucky " times (or all the time) are a part of this disease. My

hep has told me I will need to adjust my definition of what is

feeling " normal or well " for me. Good luck with tomorrow.

PSC 5/07 Listed

[Guest guest]

Genevieve,

I am so glad your hep responded to you quickly. But I am afraid the

feeling " yucky " times (or all the time) are a part of this disease. My

hep has told me I will need to adjust my definition of what is

feeling " normal or well " for me. Good luck with tomorrow.

PSC 5/07 Listed

[Guest guest]

>

> , I have been experiencing aversion to foods and drinks that

> I love, and extreme nausea when I try to eat just one.more.bite. of

> anything. I'm losing weight, and I have none to lose--my bones stick

> out as it is.

>

>

Hi Genevieve ~

I started experiencing the same things you mentioned above about a

year and a half ago. I would take two bites of food and be full and

nauseous. I used to be a big coffee drinker and now it turns my

stomach (along with other favorite foods/drinks). I lost about 32

pounds and finally called my GI. He put me on Cipro and halfway

through the course of antibiotics, I felt " normal " and eating the

amount I used to eat without the nausea. Still don't like the foods I

used to like, but can now keep my weight up. I hope your issue

resolves quickly. good luck

Liz CT

[Guest guest]

Hi Genevieve,

The way my hep explained it to me is that there are times when the

sludge builds up, and that can cause an increase in symptoms, and he

used the term " flares up " with me. I am acutely aware of the times

that I experience the RUQ pain, and the longer I live with this

condition, the more able I am to tell the difference between an acute

bout of cholangitis (where you can't touch me, and I end up writhing

in pain), versus the sludge just slowly passing through.

I am glad to hear that your hep is so responsive. I hope all goes

well for you.