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Re: A few updates

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My GI has suggested that I take a Multi Vitamin for quite awhile, but he

never told me what kind to buy, or what I should look for in the vitamins.

When I started seeing the Transplant DR, he put me on prenatal vitamins (I'm

not pregnant), this is helped quite a bit with fatigue, and my nails and hair

are growing like crazy!

Just a suggestion.

Love,

P.S. Welcome to the group, I'm the moderator, so let me know if you have any

questions, comments, or concerns!

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Hello,

I am new to the group and was diagnosed with PSC last August. It's nice to

be able to communicate with others with the same disease, now I don't feel

like the only one. Since the disease is considered " rare " it seems very few

people know about it.

My only symptoms are itching(it drives me crazy) and fatigue. I'm currently

on Actigall and slowly being taken off of predinsone. My doctor also

suggested multi-vitamins with vitamin K. Does anyone else take vitamin K?

Thanks!

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Hi ,

Welcome to the group. My husband was also diagnosed 8/99 so we're still

learning here.

Don't know anything about vitamin K either, so I would like to hear from the

group as well.

is still on prednisone, actigal and has had itching in one isolated area

on his back that drives him crazy (me too LOL).

I've found the group to be a great help and learned a lot since joining.

Look forward to your posts.

Janet

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Hello ,

WELLCOME!

I was diagnosed 5 years ago but have never itched. I do suffer from

fatigue though. As I said in an earlier message; I was gardening over

the weekend and am feeling it today.

You are among friends here so take heart.

Yes it is rare but there are plenty of people to talk to here. Feel free

to tell us about anything that bothers you; we all know how scary it is

when you are recently diagnosed.

We are a select group. Not many people have our disease; unfortunatly it

isn't something that you can brag about <g>.

If you tell us roughly where you live (just the city) you may discover

there is another PSC'er nearby.

Steve (the English eccentric).

--------------------------------

wrote:

>

> Hello,

>

> I am new to the group and was diagnosed with PSC last August. It's nice to

> be able to communicate with others with the same disease, now I don't feel

> like the only one. Since the disease is considered " rare " it seems very few

> people know about it.

>

> My only symptoms are itching(it drives me crazy) and fatigue. I'm currently

> on Actigall and slowly being taken off of predinsone. My doctor also

> suggested multi-vitamins with vitamin K. Does anyone else take vitamin K?

>

> Thanks!

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Thanks to all for the warm welcome. It is greatly appreciated! I was living

in Washington state about an hour away from Seattle but now live in Groton

and I see a doctor at Yale in New Haven.

Sandy

Re: A few updates

> Hello ,

>

> WELLCOME!

>

> I was diagnosed 5 years ago but have never itched. I do suffer from

> fatigue though. As I said in an earlier message; I was gardening over

> the weekend and am feeling it today.

>

> You are among friends here so take heart.

>

> Yes it is rare but there are plenty of people to talk to here. Feel free

> to tell us about anything that bothers you; we all know how scary it is

> when you are recently diagnosed.

>

> We are a select group. Not many people have our disease; unfortunatly it

> isn't something that you can brag about <g>.

>

> If you tell us roughly where you live (just the city) you may discover

> there is another PSC'er nearby.

>

> Steve (the English eccentric).

> --------------------------------

>

> wrote:

> >

> > Hello,

> >

> > I am new to the group and was diagnosed with PSC last August. It's nice

to

> > be able to communicate with others with the same disease, now I don't

feel

> > like the only one. Since the disease is considered " rare " it seems very

few

> > people know about it.

> >

> > My only symptoms are itching(it drives me crazy) and fatigue. I'm

currently

> > on Actigall and slowly being taken off of predinsone. My doctor also

> > suggested multi-vitamins with vitamin K. Does anyone else take vitamin

K?

> >

> > Thanks!

>

> ------------------------------------------------------------------------

> You have a voice mail message waiting for you at iHello.com:

> http://click./1/2377/5/_/24674/_/953549465/

>

> -- Easily schedule meetings and events using the group calendar!

> -- /cal?listname= & m=1

>

>

>

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Hi Everyone!!

As far as vitamin K goes, it helps the blood clot and one of the things with

liver disease is the slow clotting time that eventually happens. My husband

was diagnosed in 1997 and took vitamin K up until recently. They

stopped it when he stopped drinking as he is an alcoholic as well. I imagine

he will be back on it eventually as he can't stay away from his beer for too

long at time. I guess that eventually perhaps all PSC patients need it or

maybe just those with low platlet counts, 's is 64. Don't know if I

helped any but I hope it helped some.

Spring

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Sandy,

You mentioned the other day that you are seeing a doctor at Yale. Since Yale

seems to have an esteemed digestive disorders center (one of the 10 or 12

National Institutes of Health affiliated centers in the country), I thought

I'd ask which doctor you see there and whether he/she has mentioned anything

about liver-related research they may be involved with. Thanks, Ezra

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I'm seeing Dr. Boyer. No he hasn't mentioned any liver related research

(I've only seen him twice). My next appointment is in May and I'll certainly

ask him then.

Sandy

Re: A few updates

> Sandy,

>

> You mentioned the other day that you are seeing a doctor at Yale. Since

Yale

> seems to have an esteemed digestive disorders center (one of the 10 or 12

> National Institutes of Health affiliated centers in the country), I

thought

> I'd ask which doctor you see there and whether he/she has mentioned

anything

> about liver-related research they may be involved with. Thanks, Ezra

>

> ------------------------------------------------------------------------

> Special Offer-Earn 300 Points from MyPoints.com for trying @Backup

> Get automatic protection and access to your important computer files.

> Install today:

> http://click./1/2344/5/_/24674/_/953647059/

>

> eGroups.com Home: /group//

> - Simplifying group communications

>

>

>

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