Re: A new member with some questions :)

[Guest guest]

Liron

URSO also causes me RUQ pain. I tried it a year ago and just could

not tolerate it. I just recent decided to try it again and have

started at one 300 mg capsule daily and I am having RUQ pain, but

going to try and adjust to it.

I have cirrohsis, and my ERCP showed a pruned billary tree, but I

don't have beading. The doctor just keept saying over and over to my

husband " her billiary tree in the liver is just gone " .

The doc had kept assuring me, I had nothing to worry about, I had

never had elevated enzymes before. He was sure I had nothing serious

going on. So he was really shocked and keept telling me how sorry he

was. I felt bad for him, I knew he felt he had misled me telling me I

had nothing to worry about. I was " lucky " to get such a fast

diagnosis, I knew with in a few weeks of having elevated LFT's.

PSC is so different for everyone. I do not have UC or Crohns either.

My hep doc told me it is unusual to actually get a PSC diagnosis from

a needle liver biopsy, because it is such a random procedure.

Good Luck to you.

PSC 5/07 Listed

[Guest guest]

Liron

URSO also causes me RUQ pain. I tried it a year ago and just could

not tolerate it. I just recent decided to try it again and have

started at one 300 mg capsule daily and I am having RUQ pain, but

going to try and adjust to it.

I have cirrohsis, and my ERCP showed a pruned billary tree, but I

don't have beading. The doctor just keept saying over and over to my

husband " her billiary tree in the liver is just gone " .

The doc had kept assuring me, I had nothing to worry about, I had

never had elevated enzymes before. He was sure I had nothing serious

going on. So he was really shocked and keept telling me how sorry he

was. I felt bad for him, I knew he felt he had misled me telling me I

had nothing to worry about. I was " lucky " to get such a fast

diagnosis, I knew with in a few weeks of having elevated LFT's.

PSC is so different for everyone. I do not have UC or Crohns either.

My hep doc told me it is unusual to actually get a PSC diagnosis from

a needle liver biopsy, because it is such a random procedure.

Good Luck to you.

PSC 5/07 Listed

[Guest guest]

welcome Liron,

We have another member in Israel whom I'm sure will reply later. I have found URSO very useful in keeping my LFT numbers down, but am on a very low dose (500mg/day for about 90kg body weight). I have tried cutting it out completely but my LFT numbers went up within a month. If I were you I would try reducing my dose before cutting it out completely.

Weight wise I am presently about 15kg over weight, but the two times in my adulthood which I wasn't overweight were both times because of undiagnosed sickness. There is hope for people with PSC, its now been 19 years since I was diagnosed and there are others in the group that have had it longer.

Ian (52) PSC 89

Hi,My name is Liron and I'm from Israel.I'm 27, and recently diagnosed with PSC, after 5 years of mysteriously elevated LFTs.I was actually a bit shocked when PSC was declared, since my LFTs

went up and down in the last few years, but were sometimes within the normal range, and the liver biopsy I did two years ago showed absolutely no sign of any problem. I also don't currently have any other diseases.

Actually, my first hepatologist told me that since the liver biopsy was normal, I probably don't have anything serious, and I'm just one of those 10% who will never know why their LFTs are elevated...Well, obviously he was wrong, and after being pregnant and having my

LFTs dropping down to the bottom of the normal range, only to fly high again as soon as I gave birth, I realized I need to see another hep. (It was then suggested by some docs that it may be an autoimmune disease, because I was " cured " while I was pregnant)

So I was finally sent to a MRCP, and aparently there was no room for an error, and it unfortunately showed a spreaded bead-like appearance throughout my bile ducts. I'm currently taking 1500 a day of Urso, and hoping for the best.

We had a rough year, with our baby being born with another rare disease (although his was fortunately treatable, and he's doing great now), and then just when we finished most of his medical care - well, life isn't always easy, I guess

So that's just a little bit about me, and since I've been reading the group's messages for a few weeks now, and seeing how knowledgeable and supportive the people here are, I'd like to share

a few questions:1. When I was sent to the MRCP, my primary care doc told me there's no need to do this test, because since I don't have UC or Crohn's, and my antibodies tests returned negative, there's no way I can have

PSC.Well I know she was wrong, but some other docs I talked to also don't understand how I can have a normal liver biopsy and no other diseases or antibodies, and still have such a definite and not so

reassuring MRCP, showing a spreaded picture throughout the bile ducts. Is it common? Is there any room for a second opinion? I don't feel there should be any, since I really trust my hepatologist and his broad experience, and he also had several docs study my MRCP

results. What do you think?2. Since starting Urso I started having RUQ pain from time to time. It's not very painful, and it goes away, but it's definitely there almost every other day. Is it normal? It wasn't there before I

started taking Urso...3. Around the time my liver enzymes started to elevate, about 5 years ago, I suddenly started gaining tons of weight. I gained 20 kilograms in 3 months, and I was a really skinny person before. I

still can't seem to lose this weight, and I really try. None of the docs I visited know why this happened and is happening. I know for sure that it was at the same time my liver enzymes started to go crazy. Has anyone had something similar? Docs think that everything

has to be related, but can't explain how.Thanks a lot and sorry for the length,Liron -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Shalom Liron,

My name is Chaim, and I am also from Israel. I am sorry that you

needed to go look for us (diagnosis with PSC), but I am happy you

found us. I have learned a lot since I joined this group about two

years ago. My wife and I are active members of the Israeli liver

foundation, and we would be happy to help you in any way we can.

Are you the same person I wrote to a few weeks ago who said we were

neighbors?

If not, my wife and I translated the PSC support brochure in hebrew

and it includes a list of some very knowledgeable doctors in Israel.

For the Jerusalem area I would advise prof. Shoval (or his

replacement, I think he is on sabatical), for the Tel Aviv area Prof.

Tor-Caspa, and for the Haifa area prof. Zuckerman (who is my

hepatologist) for a second opinion. I have to admit though that your

story sounds very much like mine, and I do have PSC without any

doubt, the only part I can't identify with is the pregnant part ;-)

My phone number: 054-2228559

My wife's (Ellen) phone number: 054-4693689

Let us know if you need anything.

If you want to contact me

>

> Hi,

> My name is Liron and I'm from Israel.

> I'm 27, and recently diagnosed with PSC, after 5 years of

> mysteriously elevated LFTs.

> I was actually a bit shocked when PSC was declared, since my LFTs

> went up and down in the last few years, but were sometimes within

> the normal range, and the liver biopsy I did two years ago showed

> absolutely no sign of any problem. I also don't currently have any

> other diseases.

> Actually, my first hepatologist told me that since the liver biopsy

> was normal, I probably don't have anything serious, and I'm just

one

> of those 10% who will never know why their LFTs are elevated...

> Well, obviously he was wrong, and after being pregnant and having

my

> LFTs dropping down to the bottom of the normal range, only to fly

> high again as soon as I gave birth, I realized I need to see

another

> hep. (It was then suggested by some docs that it may be an

> autoimmune disease, because I was " cured " while I was pregnant)

> So I was finally sent to a MRCP, and aparently there was no room

for

> an error, and it unfortunately showed a spreaded bead-like

> appearance throughout my bile ducts.

> I'm currently taking 1500 a day of Urso, and hoping for the best.

> We had a rough year, with our baby being born with another rare

> disease (although his was fortunately treatable, and he's doing

> great now), and then just when we finished most of his medical care

> - well, life isn't always easy, I guess

>

> So that's just a little bit about me, and since I've been reading

> the group's messages for a few weeks now, and seeing how

> knowledgeable and supportive the people here are, I'd like to share

> a few questions:

>

> 1. When I was sent to the MRCP, my primary care doc told me there's

> no need to do this test, because since I don't have UC or Crohn's,

> and my antibodies tests returned negative, there's no way I can

have

> PSC.

> Well I know she was wrong, but some other docs I talked to also

> don't understand how I can have a normal liver biopsy and no other

> diseases or antibodies, and still have such a definite and not so

> reassuring MRCP, showing a spreaded picture throughout the bile

> ducts. Is it common? Is there any room for a second opinion? I

don't

> feel there should be any, since I really trust my hepatologist and

> his broad experience, and he also had several docs study my MRCP

> results. What do you think?

>

> 2. Since starting Urso I started having RUQ pain from time to time.

> It's not very painful, and it goes away, but it's definitely there

> almost every other day. Is it normal? It wasn't there before I

> started taking Urso...

>

> 3. Around the time my liver enzymes started to elevate, about 5

> years ago, I suddenly started gaining tons of weight. I gained 20

> kilograms in 3 months, and I was a really skinny person before. I

> still can't seem to lose this weight, and I really try. None of the

> docs I visited know why this happened and is happening. I know for

> sure that it was at the same time my liver enzymes started to go

> crazy. Has anyone had something similar? Docs think that everything

> has to be related, but can't explain how.

>

> Thanks a lot and sorry for the length,

> Liron

>