Wondering

[Guest guest]

Hayley

Welcome to you and your husband. Sorry you had a reason to find us, but we are a great bunch if I do say so myself. All your questions don't have definitive answers. There are no set time frames for any of these things. My terrible itching led me to a series of doctors and eventually a dx of PSC. It is true that many of the drugs we take for UC can cause liver damage, but I don't know that necessarily means it caused PSC. People who have UC are at much more likely to get PSC. And those with PSC almost always develop UC or Crohns. My PSC and UC were dx about the same time. I feel I had PSC for maybe as long as 15 years before it was diagnosed. My UC for about 10 years. But it's all guess work. I was dx three years ago. The "average" time between diagnosis and transplant is 10 years. But we have people who have skewed the average both ways by many years.

Pretty much everyone in this group takes Urso. A few of us can't tolerate it. There is no doubt that the urso can relieve itching for many people and does improve our lab results. There is no evidence that it actually slows down the progress of the disease. Several people here are participating in trials that give them increased dosages. Some others aren't officially part of the trials, but their doctors are increasing their levels to see if it helps.

I don't know what drug your husband takes for his UC, but I know I once took Pentasa and it required me to take 4 pills 4 times a day! I could not tolerate it. I believe Asacol is the drug of choice for people with UC. I had terrible reactions to all the normal medicines, so I take 6 mp. It's an oral chemotherapy drug that is most often used for leukemia, but it has worked to control my UC.

I take 1500 mg of calcium in the form of Calcium Citrate daily. two pills at breakfast, one at lunch, and two in the evening. If you have any more questions, go ahead and ask away--someone will have the answer.

Cheryl Berg, Idaho 44 Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, disability (retired English teacher)

wondering

Hi my husband was first dignosed with PSC 6 months ago(he was dignosed with UC 12 years ago.

The doctors don't say alot. It was my understanding that the drugs he was taking for UC had caused PSC.(his immume system is not working)

He's since had the dye and scans done. Now he's been put on a drug called Ursodeoxycholic Acid has anyone else been put on this.He was taking 2 after each meal now they have up it to 4 twice aday-plus the pills he takes for UC thats 12 tablets aday(is anyone else doing this)

All the doctors say is go and live your life to the full. As a young family with too young children its sracy to say the least.

Could anyone tell me how along after beening dignosed with PSC does the itching start or when the signs of liver failure begin. The doctors when ask say it could be 5, 10, 15 years they can't tell.There has never been any mention about nutrution or taken plenty of calcium for keeping his bones strong.

If there is anyone who can tell me or ask my questions i would be truly grateful

Hayley

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[Guest guest]

UC does not cause PSC (nor do the meds you take for UC). A small percentage of us with UC do get PSC, for unknown reasons. A smaller percentage of those with Crohns get PSC, and a very small percentage of "normal" people get PSC. PSC (and UC, Crohns, eczema, arthritis, asthma) is thought to be and autoimmune disease - something in your immune system goes a little haywire and your body kind of attacks itself, in various ways.

Most people with PSC now take a form of Ursodeoxycholic Acid (Ursodiol, Actigall, Urso-250, and other names internationally), even though it is not approved for that use, it appears to help liver function numbers. Most people now take what is considered to be a high dose of Urso, since it appears to help (studies are ongoing). I take 2000 mg/day (8 tablets spread out over the day). I weigh about 175 lbs, so your husband's dose sounds about right. I also take sulfasalazine (Azulfadine) for UC, and have for about 25 years now.

There's no set pattern or timetable for PSC - everyone appears to be different. We have some members that were diagnosed with PSC 30 years ago, and still have all their original equipment. The average time from diagnosis to transplant is about 10 years, but that is an average (I'm hoping to be on the 30 year end, myself!).

Keep asking questions, the answers are here.

Arne52 - UC 9/77 - PSC 4/00Alive and (mostly) well in Minnesota

-----Original Message-----From: Hayley Kitcher Sent: Thursday, August 07, 2003 5:21 PMTo: Subject: wondering

Hi my husband was first dignosed with PSC 6 months ago(he was dignosed with UC 12 years ago.

The doctors don't say alot. It was my understanding that the drugs he was taking for UC had caused PSC.(his immume system is not working)

He's since had the dye and scans done. Now he's been put on a drug called Ursodeoxycholic Acid has anyone else been put on this.He was taking 2 after each meal now they have up it to 4 twice aday-plus the pills he takes for UC thats 12 tablets aday(is anyone else doing this)

All the doctors say is go and live your life to the full. As a young family with too young children its sracy to say the least.

Could anyone tell me how along after beening dignosed with PSC does the itching start or when the signs of liver failure begin. The doctors when ask say it could be 5, 10, 15 years they can't tell.There has never been any mention about nutrution or taken plenty of calcium for keeping his bones strong.

If there is anyone who can tell me or ask my questions i would be truly grateful

Hayley

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[Guest guest]

Hayley,

Welcome, sorry that you are here, but here is the right place for you and

your husband. I had UC and PSC for 25+ yrs before being transplanted. With the

new knowledge and the newer and better meds that are being developed, whose to

say your husband will ever need a tx.

I had the UC before the PSC and since they mis-diagnosed me as having IBS

instead of UC, I wasn't on any meds for UC until after I developed PSC, so I

doubt the meds had anything to do with it. But, this thing we have affects

every single one of us in a diferent manner, so the best thing to do is ask

your questions and read the diferent responces. That will give you an idea of

where your husband may be heading. My wife and I raised two girls while this

was going on and I worked until I retired. Sure, there are going to be some

adventures along the way, like itching and fatigue but with knowledge it is

easier to cope. We will be with you along the way and there are no dumb

questions. Make a list of questions when you go to the Drs and make them

respond with information about your husband. If you don't understand something

make them repeat and explain. They work for you even though you will be a team

through this. Tim L

--

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

[Guest guest]

Meg and Moms of CHARGE kids,

The more I read and the more I learn about CHARGE, I wonder

if I might not have a number of the minor diagnostic critera. I

believe I have the hockey-stick palmar crease plus a few others. I

don't know if it would be CHARGE or just a coincidence.

Are there other Moms that feel the same way?

The latest thing was the fact that I am not yet completely through

menopause and at 53 I just found out I have severe osteoperosis in

my lower spine and moderate in my hips in spite of taking calcium

for 5 years and eating properly.

I will insist that have a bone density test in the near

future.

I am very excited about the gentic research. Answers to so many

questions would be wonderful.

Lynn

Mom to Tom 25, 20 cHARGE and wife to Doug