Re: Urso & Diet - looking for some relief

[Guest guest]

My daughter is newly on Urso (11 days now) with small bile duct PSC. She asked me to see what experience people have had with how long it takes for Urso to decrease their symptoms if it is going to be helpful. She's had extreme fatigue since mid-November or so, and getting worse. At diagnosis (12 days ago), her ALT and AST were close to normal (1.5-2x normal), and GGT about 4x normal - no blood tests since then; her doc wants to see her and retest about a month out. She is less concerned about numbers than getting some relief from this fatigue. She just went back to school after spring break - she couldn't fall asleep until 3-6 am when she was home, then slept 12-13 hours and still could barely get out of bed.She is not seeing any improvement (and is very

discouraged about being able to finish her freshman year at college) - any encouragement I can pass on about whether and when she is likely to see any improvement (given there is none yet)?She is also curious about what successes anyone has had with diet modification. She is starting to keep a food diary to see if any foods, combinations of foods, quantities of foods, etc. impact her fatigue - if anyone has tracked this and found a pattern, she is interested in knowing approximate time between consumption and impact on fatigue (so she has a clue where to start looking on her food diary for triggers). , Mom to 18 yo daughter UC 6/95, PSC 3/09

[Guest guest]

My daughter is newly on Urso (11 days now) with small bile duct PSC. She asked me to see what experience people have had with how long it takes for Urso to decrease their symptoms if it is going to be helpful. She's had extreme fatigue since mid-November or so, and getting worse. At diagnosis (12 days ago), her ALT and AST were close to normal (1.5-2x normal), and GGT about 4x normal - no blood tests since then; her doc wants to see her and retest about a month out. She is less concerned about numbers than getting some relief from this fatigue. She just went back to school after spring break - she couldn't fall asleep until 3-6 am when she was home, then slept 12-13 hours and still could barely get out of bed.She is not seeing any improvement (and is very

discouraged about being able to finish her freshman year at college) - any encouragement I can pass on about whether and when she is likely to see any improvement (given there is none yet)?She is also curious about what successes anyone has had with diet modification. She is starting to keep a food diary to see if any foods, combinations of foods, quantities of foods, etc. impact her fatigue - if anyone has tracked this and found a pattern, she is interested in knowing approximate time between consumption and impact on fatigue (so she has a clue where to start looking on her food diary for triggers). , Mom to 18 yo daughter UC 6/95, PSC 3/09

[Guest guest]

When I was put on URSO it wasn't to 'help' with any symptom, it was to hopefully

prolong time to transplant, etc. I had my colon back then (94) and do remember

when first getting on URSO getting terrible gas (Worse than I had with UC). I

got bagged in 98 and URSO doesn't give me upset.

As far as Diet, everyone has their own secrets. I have found times when Coffee

makes me itch, but lately I think it helps (Supposedly Chlorogenic acid in

coffee dillutes and increases bile flow). Also, the caffeine helps with the

fatigue. I eat a lot of protein (1-1.5gm/lb/day, most from boiled chicken and

ion exchanged whey protein). The single biggest thing I think a lot of folks do

is go extremely low fat.

>

> My daughter is newly on Urso (11 days now) with small bile duct PSC. She

asked me to see what experience people have had with how long it takes for Urso

to decrease their symptoms if it is going to be helpful. She's had extreme

fatigue since mid-November or so, and getting worse. At diagnosis (12 days

ago), her ALT and AST were close to normal (1.5-2x normal), and GGT about 4x

normal - no blood tests since then; her doc wants to see her and retest about a

month out. She is less concerned about numbers than getting some relief from

this fatigue. She just went back to school after spring break - she couldn't

fall asleep until 3-6 am when she was home, then slept 12-13 hours and still

could barely get out of bed.

>

> She is not seeing any improvement (and is very discouraged about being able to

finish her freshman year at college) - any encouragement I can pass on about

whether and when she is likely to see any improvement (given there is none yet)?

>

> She is also curious about what successes anyone has had with diet

modification. She is starting to keep a food diary to see if any foods,

combinations of foods, quantities of foods, etc. impact her fatigue - if anyone

has tracked this and found a pattern, she is interested in knowing approximate

time between consumption and impact on fatigue (so she has a clue where to start

looking on her food diary for triggers).

>

> , Mom to 18 yo daughter UC 6/95, PSC 3/09

>

[Guest guest]

What my daughter is actually looking for is transit time, so to speak. How long after eating something that might be a trigger does the impact show up in symptoms. She's looking for what works for her - but is looking for a clue how far back in her food diary to look. (As to the stuff that works for you - coffee - I'd probably have to knock her out to get it in her system - and chicken would end her UC remission - the only thing, other than taking her off her maintenance meds, that gets it going again. She's a vegetarian now, anyway...)My understanding is that at least current research indicates that Urso doesn't impact time to transplant - but might improve your numbers in the mean time (and make you feel better, at least to the extent that whatever is

circulating that shouldn't be is causing the symptoms). If it doesn't improve symptoms, I don't know that shell stay on it - so again, for anyone whose symptoms were improved by Urso - how long did it take? , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Monday, March 30, 2009 10:03:28 AMSubject: Re: Urso & Diet - looking for some relief

When I was put on URSO it wasn't to 'help' with any symptom, it was to hopefully prolong time to transplant, etc. I had my colon back then (94) and do remember when first getting on URSO getting terrible gas (Worse than I had with UC). I got bagged in 98 and URSO doesn't give me upset.

As far as Diet, everyone has their own secrets. I have found times when Coffee makes me itch, but lately I think it helps (Supposedly Chlorogenic acid in coffee dillutes and increases bile flow). Also, the caffeine helps with the fatigue. I eat a lot of protein (1-1.5gm/lb/ day, most from boiled chicken and ion exchanged whey protein). The single biggest thing I think a lot of folks do is go extremely low fat.

[Guest guest]

,

I haven't found any relief from the fatigue, but others have had minimal

success. One of the best things to do is daily excercise (walking, running,

swimming, bike riding) helps some people. Earlier getting a good night's sleep

helped. Maybe she could check with her doctor about Ambien CR. It is a

combination of drugs to help her go to sleep and then stay asleep. Possibly a

sleep study. I belong to another group for another auto-immune disease and some

people have done sleep studies and found that they weren't getting the adequate

level of sleep while they were sleeping.

Years ago I found great success with the Fit for Life diet the authors Harvey

and Marilyn Dimond (I think that is correct but can't find my book right now).

It does food combining. I never felt better. I was in my late 20s and pregnant

with my fourth child. I was getting terrible heart burn and beginning toxemia

(which I had till the end of my third preg). I started this diet and those

conditions reversed and I actually maintained a very healthy weight and

recovered better than I had ever done. I can't do this diet now for other

reasons, but it was a miracle for me at the time.

For many of us, the conditions don't get better and we need to keep adjusting to

new levels of health. I'm sure it is more difficult when you are young. Even

though this disease is manageable, we must all adjust to the " death " of the life

we planned and deal with the new life of ups and downs and the constant suspense

of " when and how will it manifest itself and how we handle it. I found an

excellent counselors who specializes in helping with chronic illness and

terminal illnesses. It took a while to find the right one, but I go in for tune

ups whenever I need to. I hope you and your daughter can soon find peace and

help for all your concerns. Take care, Cheryl ID PSC/UC

She is less concerned about numbers than getting some relief from this

fatigue. She just went back to school after spring break - she couldn't fall

asleep until 3-6 am when she was home, then slept 12-13 hours and still could

barely get out of bed.

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> , Mom to 18 yo daughter UC 6/95, PSC 3/09

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