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I am a 60 yr old female, diagnosed with psc one year ago.So far I do not have any major symptons but do get an occasional cholangitis attack(chills and fever) Am currently taking 5 (250 mg) ursodiol daily. I also have ulcerative colitis. Would be interested in exchanging information with others with this disease.

Hi,

Welcome to the group. Sorry you've got PSC. I'm Barbara from the UK and am 52. I've had psc for many years but thankfully don't have UC, not soo far anyway! The group is qute large with people from all ages, children and their parents to folk in their 60s and 70s.

Perhaps you would like to tell us a bit about yourself and do ask as many questions as you like, you will get plenty of answers. :~)

Love Barbara (UK)

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By your address can we assume your name is Myrtle?

When you feel comfortable please tell us more about

yourself - like where you live and about yourself and

family.

One of the first things I would suggest is that you

might be taking a higher dosage of Ursodiol as many in

the group do and have found it very effective. They

have tried it in PBC and now are finding that it helps

with PSC too. Others in the group can give you a more

exact was of figuring the right dosage. Many doctors

are receptive to any information we pass on to them

from the group as PSC is such a rare disease.

We have another woman, Martha who is in her sixties

and several of us pushing 60. You find this group

loving and caring as well as very informative.

Welcome.

=====

Peg,wife of Phil(59), UC 30 yrs, dx PSC 12/98, Listed UCLA 3/2000,status 3

stable,living in LA, CA suburbs, 2 kids, 5 grandchildren, 2 cats

__________________________________________________

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Welcome to the group, you are in the right place if you want to get information. I am 69 and have had PSC about 2 yrs., I am sure I had it before that but that is when I was diagnosed. My biggest complaint has been itching, which has gotten under control a little with Rifampin. I also take Urso 1200 mg. daily.

That is my story but there are a lot of other people who have been here longer than I and know more about the disease. Fatigue is also a big factor but I am like you I am retired and rest a lot.

My best wishes

Martha from Mo.

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  • 2 weeks later...

It's kinda overwhelming in just a short time. I'm 43 yoa and feel I

was just beginning to enjoy my new marriage. My wife has been very

supportive and understanding, but has been very difficult for me to

handle. This weekend has been very hard on the both of us.

Hi Craig,

I'm a bit older than but don't have the benefit of a loving spouse! But I've had PSC for many years andI can understand how difficult it must be. I had had years of problems before I was diagnosed with PSC and I must admit was rather tired of been the RUQ pain patient for so long. They took out my gallbladder thinking it might help but it made things worse if anything.

Please don't be scared, fire those questions and get your worries off your chest.

All the best,

Barbara (UK)

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Welcome Craig,

Your story has been heard many times in this group.

It takes awhile to get adjusted to having this disease

but you will be able to accept it in time (what else

can you do).

My husband and I had been married just a year and a

half when he was diagnosed (we are in our late 50's -

not our first marriages). Not a very good wedding

present for sure.

Where do you live in Iowa. My daughter, Son-in-law

(Craig) and their 2 kids live in Sabula. Phil and I

live in California.

Glad you found us.

=====

Peg,wife of Phil(59), UC 30 yrs, dx PSC 12/98, Listed UCLA 3/2000,status 3

stable,living in LA, CA suburbs, 2 kids, 5 grandchildren, 2 cats

__________________________________________________

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  • 3 years later...
Guest guest

Dear A (make up a name please, if you are uncomfortable using yours),

You said:

<<I am new to the group. Struggling with an addiction to Valium, whichwas prescribed 28 years ago by a doctor. I've been off it for 19 daysnow, and am experiencing withdrawals.>>

** Have you just stopped taking this drug all at once? What dose were you taking?

You cannot abruptly stop a benzodiazepine. Sepending on the dose you were taking you can have seizures from abrupt cessation.

Please describe your withdrawal. This is potentially very serious if you have not slowly reduced the drug.

Do you take any other pharmaceutical drugs? What is your age?

Regards,

(list owner)

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  • 1 year later...

Hi, I am a new member here. My name is and I live in Illinois. I

have been suffering from atypical facial nerve pain for 6 years. I had

surgery 4 years ago, but it made it worse. I am in constant pain, but

the pain medicines help.

I also have nerve pain in my feet, but I tested negative for periphial

neuropathy.

I am only 47 and feel as though my life has been taken away from me. I

am not able to work and tired alot because of all the medication. I

feel like my family ignores me. I only have 1 friend. So I am lonely.

Thanks for listening,

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  • 3 months later...

Craig wroteL

I still have some minor pain when the weather changes so I used a .25 of a nitro

pill to see what happened. didnt have chest pain, but the back pain went away

Hi Craig,

Nitroglycerin will relax smooth muscles and my Dad who is 88 will take

it when his left shoulder hurts because he does not know if it is

angina or his muscle spasm. So it is a side effect that will do that

but is not to be used for that purpose specifically. I have also taken

calcium sometimes to help with my muscle spasms because my calcium

level is low but it helps sometimses.

Nitroglycerin is thought to improve oxygen flow by relaxing the walls

of arteries and veins, thus allowing them to dilate. This is from a

website explaining why it works. You can type in nitroglycerin and

muscle spasm and it will give you information on the effect. So you

are not imagining things.

Welcome and I am glad your pain levels are better. Bennie

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Oh my gosh, and you are up where it is cold. How did you beat it? I

keep trying, and everytime I push too much I am down for a couple

days. I can mow three bar ditches in the summer, and have lots of

dogs to care for, and 3/4 acre, so I know it's not for lack of

trying. Tell me what worked for you.

cyrilla

" Larry " wrote:

>

> Hi Cyrilla,

>

>. I fought it every day and finally beat it and got myself back to

normal.

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