Re: Looking for some answers...

[Guest guest]

·

Sorry,

no information on the diet mentioned – haven’t seen it. Diet

and nutrition has been a subject on most of the PSC-partners conferences.

I’d be leery of trying a diet without my hep’s OK.

·

I have

no experience with Lialda (mesalamine), but I was at one time in a trial of

Pentasa (similar drug), which was not as effective as sulfasalazine. Some

members have reported similar results (not as effective). See http://www.ccfa.org/info/treatment/aminosalicylates

for a reputable comparison. Based on reading it, kidney impairment may be

a more significant side effect relative to sulfasalazine.

·

My only

experiences with cholangitis (3 times) were characterized by malaise in the

mornings and worsening to fever, chills in the evenings. No idea why.

Sorry, not much help.

Arne

From:

[mailto: ] On

Behalf Of karen.larson49

Any thoughts about the " Specific Carbohydrate Diet " that was created by a PSC mom…

Also, anybody with Lialda experience that can offer long term usage information or just in

general?

Also, my daughter says that if she's going to get episodes or be asymptomatic, its in the

evening. Does anybody know why this is?

[Guest guest]

·

Sorry,

no information on the diet mentioned – haven’t seen it. Diet

and nutrition has been a subject on most of the PSC-partners conferences.

I’d be leery of trying a diet without my hep’s OK.

·

I have

no experience with Lialda (mesalamine), but I was at one time in a trial of

Pentasa (similar drug), which was not as effective as sulfasalazine. Some

members have reported similar results (not as effective). See http://www.ccfa.org/info/treatment/aminosalicylates

for a reputable comparison. Based on reading it, kidney impairment may be

a more significant side effect relative to sulfasalazine.

·

My only

experiences with cholangitis (3 times) were characterized by malaise in the

mornings and worsening to fever, chills in the evenings. No idea why.

Sorry, not much help.

Arne

From:

[mailto: ] On

Behalf Of karen.larson49

Any thoughts about the " Specific Carbohydrate Diet " that was created by a PSC mom…

Also, anybody with Lialda experience that can offer long term usage information or just in

general?

Also, my daughter says that if she's going to get episodes or be asymptomatic, its in the

evening. Does anybody know why this is?

[Guest guest]

Lori,

I don't know if I have the right answers for your questions but I would

like to give my imput. I'm hoping it helps. Your question with your

daughter experiencing uc symptoms in the evening...I totally agree. I

have pretty severe UC and I have found that evening can be my best or

worst time. I think it has something to do with dinner, what I eat, how

much I eat etc. I like to try and eat small meals. I have noticed that

the more I eat the worse I feel, I snack throughout the day instead.

Once again, I hope this helps. I don't recall anyone else describing

this. Maybe it is a Wisconsin thing, I'm about 2 hours north of you but

I spend lots of time in New Berlin.

Good luck

Holly