Re: Fatigue and PSC progression?

[Guest guest]

,

In 's case the fatigue definately got worse as his PSC

progressed. Right before transplant, he mostly lived on our couch.

That is why I love to see him up and moving now! It's good that you

are heading back to see his Hep. He may just have some blood levels

out of wack. 's vitamin D level was low and once they started him

on extra vitamin D, he seemed to have more energy. He took ADEKs

before transplant. It is vitamins A, D, E, and K. The ones most

effected by liver problems.

Good Luck,

[Guest guest]

,

In 's case the fatigue definately got worse as his PSC

progressed. Right before transplant, he mostly lived on our couch.

That is why I love to see him up and moving now! It's good that you

are heading back to see his Hep. He may just have some blood levels

out of wack. 's vitamin D level was low and once they started him

on extra vitamin D, he seemed to have more energy. He took ADEKs

before transplant. It is vitamins A, D, E, and K. The ones most

effected by liver problems.

Good Luck,

[Guest guest]

For the record, my hepatologist seems pretty opposed to taking herbal remedies of any kind. Some can be harmful to the liver. When I went to the UCLA seminar on the liver in January, they had a pharmacist speak about herbs, and he was also opposed to taking them since some are very harmful to the liver. He said herbal tea was okay since that is very diluted.

Hello fellow PSC Groupies:Am keepiug up with the posts, but have to admit that when things are going well with Fred's PSC, we try to pretty much forget about it, thus my non-involvement on the board.I have to say Fred's done very well since his March 04 diagnosis. His only PSC symptom has been mild fatigue until recently.(Thank God for retirement!)The mild fatigue has become excessive. I'm wondering if the excessive fatigue is a sign of disease progression? Or could mean nothing? He sees his hepatologist in July. He's agreed to take SAM-e, but I don't know that that will help his energy. He does take fish oil, a multi-vitamin, Asacol for the UC, and of course Actigall for the PSC.He also has an excellent diet, does not drink or smoke, is not overweight, and hikes or walks about 4 times a week, although he's requiring a lot more motivation to exercise!I'll also check the PSC literature to see what I can find out about the relationship between fatigue level and disease progression.Thanks for all that everyone does in this group to support each and find/fund a cure!Wife of FredPSC, 03/04, UC 03/06 PP (Pretty Pooped) 05/07

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[Guest guest]

For the record, my hepatologist seems pretty opposed to taking herbal remedies of any kind. Some can be harmful to the liver. When I went to the UCLA seminar on the liver in January, they had a pharmacist speak about herbs, and he was also opposed to taking them since some are very harmful to the liver. He said herbal tea was okay since that is very diluted.

Hello fellow PSC Groupies:Am keepiug up with the posts, but have to admit that when things are going well with Fred's PSC, we try to pretty much forget about it, thus my non-involvement on the board.I have to say Fred's done very well since his March 04 diagnosis. His only PSC symptom has been mild fatigue until recently.(Thank God for retirement!)The mild fatigue has become excessive. I'm wondering if the excessive fatigue is a sign of disease progression? Or could mean nothing? He sees his hepatologist in July. He's agreed to take SAM-e, but I don't know that that will help his energy. He does take fish oil, a multi-vitamin, Asacol for the UC, and of course Actigall for the PSC.He also has an excellent diet, does not drink or smoke, is not overweight, and hikes or walks about 4 times a week, although he's requiring a lot more motivation to exercise!I'll also check the PSC literature to see what I can find out about the relationship between fatigue level and disease progression.Thanks for all that everyone does in this group to support each and find/fund a cure!Wife of FredPSC, 03/04, UC 03/06 PP (Pretty Pooped) 05/07

Get a preview of Live Earth, the hottest event this summer - only on MSN

[Guest guest]

For the record, my hepatologist seems pretty opposed to taking herbal remedies of any kind. Some can be harmful to the liver. When I went to the UCLA seminar on the liver in January, they had a pharmacist speak about herbs, and he was also opposed to taking them since some are very harmful to the liver. He said herbal tea was okay since that is very diluted.

Hello fellow PSC Groupies:Am keepiug up with the posts, but have to admit that when things are going well with Fred's PSC, we try to pretty much forget about it, thus my non-involvement on the board.I have to say Fred's done very well since his March 04 diagnosis. His only PSC symptom has been mild fatigue until recently.(Thank God for retirement!)The mild fatigue has become excessive. I'm wondering if the excessive fatigue is a sign of disease progression? Or could mean nothing? He sees his hepatologist in July. He's agreed to take SAM-e, but I don't know that that will help his energy. He does take fish oil, a multi-vitamin, Asacol for the UC, and of course Actigall for the PSC.He also has an excellent diet, does not drink or smoke, is not overweight, and hikes or walks about 4 times a week, although he's requiring a lot more motivation to exercise!I'll also check the PSC literature to see what I can find out about the relationship between fatigue level and disease progression.Thanks for all that everyone does in this group to support each and find/fund a cure!Wife of FredPSC, 03/04, UC 03/06 PP (Pretty Pooped) 05/07

Get a preview of Live Earth, the hottest event this summer - only on MSN

[Guest guest]

Hi Marie-

Actually, SAMe is not an herb. It's a substance that the body itself

makes. People who are compromised due to a bad liver (or depression),

just don't make enough SAMe in their bodies.

I feel certain Fred's hepatologist would be fine with it. There are

more than a few people on this board who take it, and I know Arne has

studied it's efficacy and safety quite a bit.

Wife of Fred, PSC 03/04, UC 03/06

[Guest guest]

Hi Marie-

Actually, SAMe is not an herb. It's a substance that the body itself

makes. People who are compromised due to a bad liver (or depression),

just don't make enough SAMe in their bodies.

I feel certain Fred's hepatologist would be fine with it. There are

more than a few people on this board who take it, and I know Arne has

studied it's efficacy and safety quite a bit.

Wife of Fred, PSC 03/04, UC 03/06

[Guest guest]

Hi Marie-

Actually, SAMe is not an herb. It's a substance that the body itself

makes. People who are compromised due to a bad liver (or depression),

just don't make enough SAMe in their bodies.

I feel certain Fred's hepatologist would be fine with it. There are

more than a few people on this board who take it, and I know Arne has

studied it's efficacy and safety quite a bit.

Wife of Fred, PSC 03/04, UC 03/06

[Guest guest]

--Thanks for the info on the vitamin issues. Will have Fred ask about

that.

>

>

> 's vitamin D level was low and once they started him

> on extra vitamin D, he seemed to have more energy. He took ADEKs

> before transplant. It is vitamins A, D, E, and K. The ones most

> effected by liver problems.

>

> Good Luck,

>

>

>

[Guest guest]

--Thanks for the info on the vitamin issues. Will have Fred ask about

that.

>

>

> 's vitamin D level was low and once they started him

> on extra vitamin D, he seemed to have more energy. He took ADEKs

> before transplant. It is vitamins A, D, E, and K. The ones most

> effected by liver problems.

>

> Good Luck,

>

>

>

[Guest guest]

--Thanks for the info on the vitamin issues. Will have Fred ask about

that.

>

>

> 's vitamin D level was low and once they started him

> on extra vitamin D, he seemed to have more energy. He took ADEKs

> before transplant. It is vitamins A, D, E, and K. The ones most

> effected by liver problems.

>

> Good Luck,

>

>

>

[Guest guest]

Fred,

I also go to UCLA?

Who is your hep doctor?

What park of L A do you live in?

Marsha

PSC 1998See what's free at AOL.com.