Re: Fatique

[Guest guest]

>

>http://www.butyoudontlooksick.com/the_spoon_theory/

The " spoon theory " may help you understand where your husband is coming

from with dealing with a chronic disease. I do think it is both

physical and mentally draining dealing with a chronic disease. I also

have read a book several months ago written by doctor who thinks that

when the body has a diseae that there is an effect on the mind even

when the person has not been diagnosised yet.

Hope you have a wonderful Holiday season together.

PSC 5/07 Listed

[Guest guest]

>

>http://www.butyoudontlooksick.com/the_spoon_theory/

The " spoon theory " may help you understand where your husband is coming

from with dealing with a chronic disease. I do think it is both

physical and mentally draining dealing with a chronic disease. I also

have read a book several months ago written by doctor who thinks that

when the body has a diseae that there is an effect on the mind even

when the person has not been diagnosised yet.

Hope you have a wonderful Holiday season together.

PSC 5/07 Listed

[Guest guest]

>

>http://www.butyoudontlooksick.com/the_spoon_theory/

The " spoon theory " may help you understand where your husband is coming

from with dealing with a chronic disease. I do think it is both

physical and mentally draining dealing with a chronic disease. I also

have read a book several months ago written by doctor who thinks that

when the body has a diseae that there is an effect on the mind even

when the person has not been diagnosised yet.

Hope you have a wonderful Holiday season together.

PSC 5/07 Listed

[Guest guest]

I wanted to revist this post about fatique and ask a few more

questions......

1. For those of you that suffer from fatique - do you find that that

any combination of good excercise routines and healthy

eating/lifestyle are at all helpful?

2. Is there any way to actually put a measurement on the amount of

fatique you feel? I am used to being a very active person - I played

hockey in college, and many other sports in high school and

thereafter. But now, I don't find the energy for it and I'm

wondering if there is a way to measure how much fatique a person

feels.

3. For those of you that do suffer from PSC related fatique - was

there anything that you did or are doing that was or is helpful?

Thank you for any responses!

Rick

>

> I am curious how some of you do with fatique. The last biopsy I

had

> put me at stage 1 PSC, but that was 2 years ago and I may have

> progressed since then. I am noticing more and more significantly

> that I am more fatiqued now than I was even 2 years ago. At the

> current time, i'm trying to determine if it is diet and excercise

> related because both my diet and excersice routines have suffered -

> but a couple weeks in to " getting on track " I haven't really

noticed

> an improvement.

>

> I can still work a full 8 hour day and play with my daughter for

> awhile when I get home, but feel like my arms and legs are " heavy "

> and I really just want to relax. This did not used to be the case

> for me as I used to be quite a bit more active.

>

> When did some of you really start to experience fatique? Was there

a

> specific point in the progression of PSC that you noticed it? Was

> that at stage 4/cirrhosis or was it before that? Could you tell

> without doubt that your fatique was caused by PSC?

>

> Thank you for any feedback here!

>

> Rick

>

[Guest guest]

I wanted to revist this post about fatique and ask a few more

questions......

1. For those of you that suffer from fatique - do you find that that

any combination of good excercise routines and healthy

eating/lifestyle are at all helpful?

2. Is there any way to actually put a measurement on the amount of

fatique you feel? I am used to being a very active person - I played

hockey in college, and many other sports in high school and

thereafter. But now, I don't find the energy for it and I'm

wondering if there is a way to measure how much fatique a person

feels.

3. For those of you that do suffer from PSC related fatique - was

there anything that you did or are doing that was or is helpful?

Thank you for any responses!

Rick

>

> I am curious how some of you do with fatique. The last biopsy I

had

> put me at stage 1 PSC, but that was 2 years ago and I may have

> progressed since then. I am noticing more and more significantly

> that I am more fatiqued now than I was even 2 years ago. At the

> current time, i'm trying to determine if it is diet and excercise

> related because both my diet and excersice routines have suffered -

> but a couple weeks in to " getting on track " I haven't really

noticed

> an improvement.

>

> I can still work a full 8 hour day and play with my daughter for

> awhile when I get home, but feel like my arms and legs are " heavy "

> and I really just want to relax. This did not used to be the case

> for me as I used to be quite a bit more active.

>

> When did some of you really start to experience fatique? Was there

a

> specific point in the progression of PSC that you noticed it? Was

> that at stage 4/cirrhosis or was it before that? Could you tell

> without doubt that your fatique was caused by PSC?

>

> Thank you for any feedback here!

>

> Rick

>

[Guest guest]

I was having a lot of problems with fatigue several years ago, and running blood

tests to

try to find the source of the fatigue revealed my elevated LFTs and lead to my

eventual

diagnosis of PSC. Fatigue is really the only symptom I've had. At that time,

it would hit

me in the evening around dinner time & it was like I had run into a brick wall.

My husband

had to run out & get fast food dinners & then be solely responsible for putting

our son to

bed many nights during that time because I would just quit & be done for the

day.

After I got my diagnosis, I started taking better care of myself, eating

healthier and cutting

back on soda, which I used to drink almost constantly. I also started on Urso,

and I

eventually got a lot of relief from the fatigue. I don't know how much was the

Urso and

how much was the lifestyle change. It only makes sense that eating healthier

and cutting

out harmful things will impact the functioning of your liver. But since then I

have had a

couple of times when I have gone off Urso and once I've been off of it for a

week, I can feel

some of the fatigue returning.

I have not been told what the stage of my disease is, but I know it is fairly

early and my

liver function is excellent, according to my doctors. So, it is surprising that

I would have

that much fatigue at an early stage, but my understanding is that PSC affects us

all in very

different ways and that severity of symptoms is not necessarily related to stage

or

progression of the disease. I should also add that I have just recently been

diagnosed

with premature menopause (and I've had that going on for several years), which

also

causes fatigue. So, it may not all be related to PSC. But Urso definitely

makes a difference

for me.

I still get tired in the evenings and sometimes run out of energy, but it

doesn't happen

until 9 or 10:00, and I can push through it if I need to. It's not like hitting

a brick wall any

more.

Debbie in Atlanta

> 1. For those of you that suffer from fatique - do you find that that

> any combination of good excercise routines and healthy

> eating/lifestyle are at all helpful?

> 2. Is there any way to actually put a measurement on the amount of

> fatique you feel? I am used to being a very active person - I played

> hockey in college, and many other sports in high school and

> thereafter. But now, I don't find the energy for it and I'm

> wondering if there is a way to measure how much fatique a person

> feels.

> 3. For those of you that do suffer from PSC related fatique - was

> there anything that you did or are doing that was or is helpful?

>

[Guest guest]

Hi Rick

I work in a Rehab facility for people with Brain Injury and Mental

Health issues. While the patient population doesn't match our personal

issues, there are some things we advise our patients to help their

particular situation. I'll put my responses after your questions below:

1. For those of you that suffer from fatigue - do you find that that

any combination of good exercise routines and healthy eating/lifestyle

are at all helpful?

-> If there's one thing we try to advocate for with our clients is a

consistent schedule. Most of them no longer work for a living so

there's no incentive to get up in the morning or to make a habit of

going to bed at any particular time. We try to encourage and in some

cases insist that people go to bed at consistent times and get up at

similarly consistent times. The take-home message is keeping a

consistent schedule that includes regular exercise (as tolerated). For

some, this may be as little as a walk around the building to as much

as a full work out with weights and cardio. The key is doing it rather

than planning it. Schedule it in and stick to it but have a fallback

(i.e., if you're feeling fatigued, at least go for a walk but don't do

the cardio routine).

For my own situation, I find the shift work has been wreaking havoc on

my own sleep situation and subsequently I have been having some days

where it takes me anywhere up to 4-5 hours just to feel awake. I've

also been burning the candle at both ends lately--again something

which flies totally in the face of what it is I'm advising the folks

at work what not to do. [Yes, we don't always practice what we preach

..... .]

2. Is there any way to actually put a measurement on the amount of

fatigue you feel? I am used to being a very active person - I played

hockey in college, and many other sports in high school and

thereafter. But now, I don't find the energy for it and I'm

wondering if there is a way to measure how much fatique a person

feels.

->Whenever we get into quantifying something which is not easily

measured, we usually use a Likert Scale. We generally use them for

mood ratings but it can easily be adapted to fatigue ratings. A

typical Likert Scale has either 5 or 7 points: -2, -1, 0, +1, +2 OR

-3, -2, -1, 0, +1, +2, +3. At pre-determined times, we ask our clients

to rate their mood on this scale (usually 3-4 times a day: i.e.,

wake-up, noon, dinner, bedtime). We track and graph the numbers

corresponding to time of day and mood. In some instances, we may see a

trend where the individual is more positive upon waking but variable

over the course of the day/week.

To modify this scale, assign terms you understand to the numbers:

-3 = I feel so tired I can't move; 0 = I feel neither tired or

energized; +3 = I feel like I can run a mile. If you're faithful to

completing the ratings, you will see a trend develop which may

pinpoint times of the day where you may need to allow yourself to nap

for example. Or you may see that really you should be getting up 20-30

min later than you do currently.

3. For those of you that do suffer from PSC related fatique - was

there anything that you did or are doing that was or is helpful?

-> I know I need to do something about the shifts as the variability

to my schedule is definitely not helping my own situation. I'll have

to see what I can work out with the employer on this one.

[Guest guest]

To Debbie and in Atlanta:

Being a fellow Georgian, and from Atlanta, just wondering who you or your spouses see as a physician?

C.

Crohns '96, PSC 2006

To Debbie in Atlanta from in Atlanta:Hi y'all!Re: fatigue. Interesting about the higher Urso dose helping your fatigue levels. Since Fred's dropped some of his Actigal (same as Urso) dose, he's definitely been more tired, but I'm actually not sure if it's coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the conclusion after a few years' study that high dose Urso was not near as helpful in treating PSC as he/others thought, and it may possibly do harm. Since Dr. Lindor's announcement, many PSCers have lowered their dosages.Search the PSC archives for more info.)Regardless, I'd love to find an energy booster for Fred. He tried Provigil for his ADHD years ago, with no success in helping him focus. This was prior to him having the PSC diagnosis.I may suggest he try it again, since someone else on the board mentioned it for energy. Fred uses any little energy he does have playing Sudoku. I got him a Sudoku a Day 2009 Calendar for Christmas, and he's well into April. I expect Christmas, for him, will be here in a month or two. :)Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09 New year...new news. Be the first to know what is making headlines.

[Guest guest]

To Debbie and in Atlanta:

Being a fellow Georgian, and from Atlanta, just wondering who you or your spouses see as a physician?

C.

Crohns '96, PSC 2006

To Debbie in Atlanta from in Atlanta:Hi y'all!Re: fatigue. Interesting about the higher Urso dose helping your fatigue levels. Since Fred's dropped some of his Actigal (same as Urso) dose, he's definitely been more tired, but I'm actually not sure if it's coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the conclusion after a few years' study that high dose Urso was not near as helpful in treating PSC as he/others thought, and it may possibly do harm. Since Dr. Lindor's announcement, many PSCers have lowered their dosages.Search the PSC archives for more info.)Regardless, I'd love to find an energy booster for Fred. He tried Provigil for his ADHD years ago, with no success in helping him focus. This was prior to him having the PSC diagnosis.I may suggest he try it again, since someone else on the board mentioned it for energy. Fred uses any little energy he does have playing Sudoku. I got him a Sudoku a Day 2009 Calendar for Christmas, and he's well into April. I expect Christmas, for him, will be here in a month or two. :)Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09 New year...new news. Be the first to know what is making headlines.

[Guest guest]

To Debbie and in Atlanta:

Being a fellow Georgian, and from Atlanta, just wondering who you or your spouses see as a physician?

C.

Crohns '96, PSC 2006

To Debbie in Atlanta from in Atlanta:Hi y'all!Re: fatigue. Interesting about the higher Urso dose helping your fatigue levels. Since Fred's dropped some of his Actigal (same as Urso) dose, he's definitely been more tired, but I'm actually not sure if it's coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the conclusion after a few years' study that high dose Urso was not near as helpful in treating PSC as he/others thought, and it may possibly do harm. Since Dr. Lindor's announcement, many PSCers have lowered their dosages.Search the PSC archives for more info.)Regardless, I'd love to find an energy booster for Fred. He tried Provigil for his ADHD years ago, with no success in helping him focus. This was prior to him having the PSC diagnosis.I may suggest he try it again, since someone else on the board mentioned it for energy. Fred uses any little energy he does have playing Sudoku. I got him a Sudoku a Day 2009 Calendar for Christmas, and he's well into April. I expect Christmas, for him, will be here in a month or two. :)Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09 New year...new news. Be the first to know what is making headlines.

[Guest guest]

To Debbie in Atlanta from in Atlanta:

Hi y'all!

Re: fatigue. Interesting about the higher Urso dose helping your fatigue

levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

he's definitely been more tired, but I'm actually not sure if it's

coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

conclusion after a few years' study that high dose Urso was not near

as helpful in treating PSC as he/others thought, and it may possibly do

harm. Since Dr. Lindor's announcement, many PSCers have lowered their

dosages.Search the PSC archives for more info.)

Regardless, I'd love to find an energy booster for Fred. He tried

Provigil for his ADHD years ago, with no success in helping him focus.

This was prior to him having the PSC diagnosis.I may suggest he try it

again, since someone else on the board mentioned it for energy. Fred

uses any little energy he does have playing Sudoku. I got him a Sudoku a

Day 2009 Calendar for Christmas, and he's well into April. I expect

Christmas, for him, will be here in a month or two.

Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

[Guest guest]

To Debbie in Atlanta from in Atlanta:

Hi y'all!

Re: fatigue. Interesting about the higher Urso dose helping your fatigue

levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

he's definitely been more tired, but I'm actually not sure if it's

coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

conclusion after a few years' study that high dose Urso was not near

as helpful in treating PSC as he/others thought, and it may possibly do

harm. Since Dr. Lindor's announcement, many PSCers have lowered their

dosages.Search the PSC archives for more info.)

Regardless, I'd love to find an energy booster for Fred. He tried

Provigil for his ADHD years ago, with no success in helping him focus.

This was prior to him having the PSC diagnosis.I may suggest he try it

again, since someone else on the board mentioned it for energy. Fred

uses any little energy he does have playing Sudoku. I got him a Sudoku a

Day 2009 Calendar for Christmas, and he's well into April. I expect

Christmas, for him, will be here in a month or two.

Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

[Guest guest]

To Debbie in Atlanta from in Atlanta:

Hi y'all!

Re: fatigue. Interesting about the higher Urso dose helping your fatigue

levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

he's definitely been more tired, but I'm actually not sure if it's

coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

conclusion after a few years' study that high dose Urso was not near

as helpful in treating PSC as he/others thought, and it may possibly do

harm. Since Dr. Lindor's announcement, many PSCers have lowered their

dosages.Search the PSC archives for more info.)

Regardless, I'd love to find an energy booster for Fred. He tried

Provigil for his ADHD years ago, with no success in helping him focus.

This was prior to him having the PSC diagnosis.I may suggest he try it

again, since someone else on the board mentioned it for energy. Fred

uses any little energy he does have playing Sudoku. I got him a Sudoku a

Day 2009 Calendar for Christmas, and he's well into April. I expect

Christmas, for him, will be here in a month or two.

Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

[Guest guest]

Hi -

ly , we're planning to switch hepatologists at some point, as

Fred's dr. is semi-retired and not terribly knowledgeable about PSC, so

I wouldn't recommend him. However, Debbie's dr. at Piedmont Hospital

sounds good and we will probably check him out. I've heard great things

about Piedmont from Czinzach (sp) on this board, also from

Atlanta, who had a transplant about a year ago and raved about her

surgeon and her care at Piedmont.

[Guest guest]

Hi -

ly , we're planning to switch hepatologists at some point, as

Fred's dr. is semi-retired and not terribly knowledgeable about PSC, so

I wouldn't recommend him. However, Debbie's dr. at Piedmont Hospital

sounds good and we will probably check him out. I've heard great things

about Piedmont from Czinzach (sp) on this board, also from

Atlanta, who had a transplant about a year ago and raved about her

surgeon and her care at Piedmont.

[Guest guest]

Hi -

ly , we're planning to switch hepatologists at some point, as

Fred's dr. is semi-retired and not terribly knowledgeable about PSC, so

I wouldn't recommend him. However, Debbie's dr. at Piedmont Hospital

sounds good and we will probably check him out. I've heard great things

about Piedmont from Czinzach (sp) on this board, also from

Atlanta, who had a transplant about a year ago and raved about her

surgeon and her care at Piedmont.

[Guest guest]

Hi ,

Just to clarify - I am only on 300mg/day of Urso. Don't remember off the top of

my head

what that translates to as far as my weight goes, but it is not a high dose. I

have noticed

that this seems to help with my fatigue. I've never tried high dose Urso.

Sudoku is awesome! :-) It's a much better low-energy activity than TV, which

is what I

usually end up doing when I'm exhausted.

Debbie

>

> To Debbie in Atlanta from in Atlanta:

> Hi y'all!

>

> Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> he's definitely been more tired, but I'm actually not sure if it's

> coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> conclusion after a few years' study that high dose Urso was not near

> as helpful in treating PSC as he/others thought, and it may possibly do

> harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> dosages.Search the PSC archives for more info.)

>

> Regardless, I'd love to find an energy booster for Fred. He tried

> Provigil for his ADHD years ago, with no success in helping him focus.

> This was prior to him having the PSC diagnosis.I may suggest he try it

> again, since someone else on the board mentioned it for energy. Fred

> uses any little energy he does have playing Sudoku. I got him a Sudoku a

> Day 2009 Calendar for Christmas, and he's well into April. I expect

> Christmas, for him, will be here in a month or two.

>

>

> Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

>

[Guest guest]

Hi ,

Just to clarify - I am only on 300mg/day of Urso. Don't remember off the top of

my head

what that translates to as far as my weight goes, but it is not a high dose. I

have noticed

that this seems to help with my fatigue. I've never tried high dose Urso.

Sudoku is awesome! :-) It's a much better low-energy activity than TV, which

is what I

usually end up doing when I'm exhausted.

Debbie

>

> To Debbie in Atlanta from in Atlanta:

> Hi y'all!

>

> Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> he's definitely been more tired, but I'm actually not sure if it's

> coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> conclusion after a few years' study that high dose Urso was not near

> as helpful in treating PSC as he/others thought, and it may possibly do

> harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> dosages.Search the PSC archives for more info.)

>

> Regardless, I'd love to find an energy booster for Fred. He tried

> Provigil for his ADHD years ago, with no success in helping him focus.

> This was prior to him having the PSC diagnosis.I may suggest he try it

> again, since someone else on the board mentioned it for energy. Fred

> uses any little energy he does have playing Sudoku. I got him a Sudoku a

> Day 2009 Calendar for Christmas, and he's well into April. I expect

> Christmas, for him, will be here in a month or two.

>

>

> Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

>

[Guest guest]

Hi ,

Just to clarify - I am only on 300mg/day of Urso. Don't remember off the top of

my head

what that translates to as far as my weight goes, but it is not a high dose. I

have noticed

that this seems to help with my fatigue. I've never tried high dose Urso.

Sudoku is awesome! :-) It's a much better low-energy activity than TV, which

is what I

usually end up doing when I'm exhausted.

Debbie

>

> To Debbie in Atlanta from in Atlanta:

> Hi y'all!

>

> Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> he's definitely been more tired, but I'm actually not sure if it's

> coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> conclusion after a few years' study that high dose Urso was not near

> as helpful in treating PSC as he/others thought, and it may possibly do

> harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> dosages.Search the PSC archives for more info.)

>

> Regardless, I'd love to find an energy booster for Fred. He tried

> Provigil for his ADHD years ago, with no success in helping him focus.

> This was prior to him having the PSC diagnosis.I may suggest he try it

> again, since someone else on the board mentioned it for energy. Fred

> uses any little energy he does have playing Sudoku. I got him a Sudoku a

> Day 2009 Calendar for Christmas, and he's well into April. I expect

> Christmas, for him, will be here in a month or two.

>

>

> Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

>

[Guest guest]

Ok. Let me try this again. That was supposed to say 900 mg/day. I am actually

taking

Actigall, I guess. That's what I was on at the beginning, but now our mail

order

prescription bottles come with the label " Ursodial " on them. But still 300mg

capsules. So,

I guess it's Actigall. Anyway. I'm not on high dose treatement, but not as low

as my typo

here suggests.

Maybe my brain needs more Soduku! :-)

Debbie

> >

> > To Debbie in Atlanta from in Atlanta:

> > Hi y'all!

> >

> > Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> > levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> > he's definitely been more tired, but I'm actually not sure if it's

> > coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> > conclusion after a few years' study that high dose Urso was not near

> > as helpful in treating PSC as he/others thought, and it may possibly do

> > harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> > dosages.Search the PSC archives for more info.)

> >

> > Regardless, I'd love to find an energy booster for Fred. He tried

> > Provigil for his ADHD years ago, with no success in helping him focus.

> > This was prior to him having the PSC diagnosis.I may suggest he try it

> > again, since someone else on the board mentioned it for energy. Fred

> > uses any little energy he does have playing Sudoku. I got him a Sudoku a

> > Day 2009 Calendar for Christmas, and he's well into April. I expect

> > Christmas, for him, will be here in a month or two.

> >

> >

> > Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

> >

>

[Guest guest]

Ok. Let me try this again. That was supposed to say 900 mg/day. I am actually

taking

Actigall, I guess. That's what I was on at the beginning, but now our mail

order

prescription bottles come with the label " Ursodial " on them. But still 300mg

capsules. So,

I guess it's Actigall. Anyway. I'm not on high dose treatement, but not as low

as my typo

here suggests.

Maybe my brain needs more Soduku! :-)

Debbie

> >

> > To Debbie in Atlanta from in Atlanta:

> > Hi y'all!

> >

> > Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> > levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> > he's definitely been more tired, but I'm actually not sure if it's

> > coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> > conclusion after a few years' study that high dose Urso was not near

> > as helpful in treating PSC as he/others thought, and it may possibly do

> > harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> > dosages.Search the PSC archives for more info.)

> >

> > Regardless, I'd love to find an energy booster for Fred. He tried

> > Provigil for his ADHD years ago, with no success in helping him focus.

> > This was prior to him having the PSC diagnosis.I may suggest he try it

> > again, since someone else on the board mentioned it for energy. Fred

> > uses any little energy he does have playing Sudoku. I got him a Sudoku a

> > Day 2009 Calendar for Christmas, and he's well into April. I expect

> > Christmas, for him, will be here in a month or two.

> >

> >

> > Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

> >

>

[Guest guest]

Ok. Let me try this again. That was supposed to say 900 mg/day. I am actually

taking

Actigall, I guess. That's what I was on at the beginning, but now our mail

order

prescription bottles come with the label " Ursodial " on them. But still 300mg

capsules. So,

I guess it's Actigall. Anyway. I'm not on high dose treatement, but not as low

as my typo

here suggests.

Maybe my brain needs more Soduku! :-)

Debbie

> >

> > To Debbie in Atlanta from in Atlanta:

> > Hi y'all!

> >

> > Re: fatigue. Interesting about the higher Urso dose helping your fatigue

> > levels. Since Fred's dropped some of his Actigal (same as Urso) dose,

> > he's definitely been more tired, but I'm actually not sure if it's

> > coincidental or not. (Dr. Lindor of the Mayo Clinic recently came to the

> > conclusion after a few years' study that high dose Urso was not near

> > as helpful in treating PSC as he/others thought, and it may possibly do

> > harm. Since Dr. Lindor's announcement, many PSCers have lowered their

> > dosages.Search the PSC archives for more info.)

> >

> > Regardless, I'd love to find an energy booster for Fred. He tried

> > Provigil for his ADHD years ago, with no success in helping him focus.

> > This was prior to him having the PSC diagnosis.I may suggest he try it

> > again, since someone else on the board mentioned it for energy. Fred

> > uses any little energy he does have playing Sudoku. I got him a Sudoku a

> > Day 2009 Calendar for Christmas, and he's well into April. I expect

> > Christmas, for him, will be here in a month or two.

> >

> >

> > Wife of Fred, PSC, 03/04, UC, 03/06, SUDOKU Black Belt, 01/09

> >

>