1. < Digestive Health

Primary Schlerosing Cholangitis

Posted by DebE13 @debe13, Aug 3, 2011

My 16 yr old son has been diagosed w/PSC and the Urso is not helping the itching. The GI doc is on vacation until next Tuesday and I'm told to wait or make an appt with our family doctor. I know that won't help. Any suggestions to help the itching in any way?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 11, 2011

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

REPLY
6 replies
DebE13 | @debe13 | Nov 27, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

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Thanks for the suggestions- we're willing to try anything. He's already taking the cholestyramine and it seems to help but he's learning the lessons of how important it is not to skip a dose. The hardest part is it makes him gag and gives him frequent bad stomach aches. At 16 he's dealt with far more than he should have to but says he'd rather have the stomach pains and les itch. At this point, I should be thankful that we're just dealing with itching and not liver failure. Although I'm not the one living with itch and feel so helpless that I can't fix this problem. It's nice to hear other people's suggestions- I appreciate it.

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PSCer | @pscer | Dec 30, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

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I was diagnosed with PSC in June of this year. I take a combination of ASACOL, Omeprazole and Ursodiol. If I miss my Asacol dose, I start itching and that is my reminder. I take 800 mg/3xday. I'm really sorry to hear that such a young man has PSC. Everything I read about it, declares how rare it is. Please keep me posted on his condition. 🙂

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PSCer | @pscer | Dec 30, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

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Rosemary, what do you mean "had". Just curious if something new has been found out about this that my doctors don't know.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 30, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

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I transplanted. So I speak of my PSC in past tense. I am sorry to have misled you.
How is your son doing?

REPLY
DebE13 | @debe13 | Dec 30, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

Jump to this post

I'll have to keep those meds in mind when I talk with the GI. My son is taking choylestyramine now and it seems to help as long as he doesn't miss a dose but it give his horrible stomach pains and he has a hard time with the taste/texture- he's even vomitted because of it. Sunny D is the only thing that is tolerable to mix it with. I'll have to ask the GI if your combination of meds would be worth a try.

What's the Omeprazole for?

My son took Ursodiol before the cholestyramine powder and I was wondering if he should still be taking that also. I read that it helps protect the liver from the excess bile acids. Any thoughts on that?

REPLY
PSCer | @pscer | Dec 30, 2011
In reply to @rosemarya "I just now read your posting. I, too had PSC and experienced the severe itching skin...." + (show)
@rosemarya

I just now read your posting. I, too had PSC and experienced the severe itching skin. I hope that your son has found some relief. My GI put me on a bile binder that helped me the most. It was a powder that had to be added to water to drink. As far as a topical ointment, I had some relief with "Sarna" lotion for itchy skin. Also "Aveeno" soothing bath relief treatment in a luke warm bath helped give relief.

Jump to this post

I have been told by 4 doctors that the Ursodiol is a medication that I will be on for the rest of my life or until I get to the point of needing a new liver (and 3 did not have a final diagnosis yet). They said that it is the only medication that works for people with PSC and PBC. The Omeprazole is for acid reflux (which was getting worse by the day). I recently ran out and it took me a week to get it refilled. I could really tell a difference. I hope this helps.

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