Re: PBC -

[Guest guest]

Hi ,

I have PBC/AIH overlap syndrome. I have been on Urso for a few years

now and after the initial couple of weeks of nausea, I have not had

any problems with it. My LFT's are normal, I see my GI every three

months and have my LFT's checked every three months.

An excellent site has loads of information on PBC:

http://pbcers.org/

They also have a group with messages like this one. In order to post,

when it asks for your password, you use your ID password.

Sandy C.

[Guest guest]

Hi Sandy,

Thank you so much for responding and for this info. I'm so glad that the urso is working for you. This gives me alot of hope. With your nausea, did you take something for that also? or just rode it out? Sorry to sound crazy, but what does LFT stand for? I imagine one of the test levels maybe? Do you have any other symptoms due to the PBC/AIH?

Thanks for this website.

silkybfp <silkybfp@...> wrote:

Hi ,I have PBC/AIH overlap syndrome. I have been on Urso for a few years now and after the initial couple of weeks of nausea, I have not had any problems with it. My LFT's are normal, I see my GI every three months and have my LFT's checked every three months.An excellent site has loads of information on PBC:http://pbcers.org/They also have a group with messages like this one. In order to post, when it asks for your password, you use your ID password. Sandy C.

[Guest guest]

I didn't take anything for the nausea - just rode it out as you

say. I fully believe the Urso is what finally brought my alk. phos.

back to the normal range. It was 860 and is now down to 139 - close

enough to the high normal number of 132.

LFT = Liver Function Tests (my dr. calls it a Chem 12 on lab

slips). These tests measure your ALT, AST, Alk. phos., etc.

levels. These are what the doctors watch and need to make sure they

stay within the normal range.

My PBC is stage 2/3 and hopefully will hold there for many years.

There are many PBC'ers that have had the disease for 10-20 years (or

longer) without needing a transplant. PBC is different in every

patient.

Because I have other disorders, I have many symptoms to deal with.

It is sometimes difficult to say which symptom goes with which

disorder.

As far as PBC symptoms, I think the worst I have is extreme fatigue,

but this is also associated with fibromyalgia. I do not have any

pain due to PBC, and fortunately don't have some of the more severe

problems such as ascites or varices. There is " brain fog " - again

associated with both PBC and fibromyalgia.

Sandy C.

[Guest guest]

Thank you for your help and taking the time to educate me, I appreciate it. You have really given me some encouragement.

I have a doctor's appt. in a few weeks and with the info. I have received you and this support group, I now can be able to ask certain questions. One, of them will be which stage I am in. They should be able to tell me due to my tests, right?

I am truly happy for you that your levels returned to normal range.

Thank you/silkybfp <silkybfp@...> wrote:

I didn't take anything for the nausea - just rode it out as you say. I fully believe the Urso is what finally brought my alk. phos. back to the normal range. It was 860 and is now down to 139 - close enough to the high normal number of 132. LFT = Liver Function Tests (my dr. calls it a Chem 12 on lab slips). These tests measure your ALT, AST, Alk. phos., etc. levels. These are what the doctors watch and need to make sure they stay within the normal range.My PBC is stage 2/3 and hopefully will hold there for many years. There are many PBC'ers that have had the disease for 10-20 years (or longer) without needing a transplant. PBC is different in every patient.Because I have other disorders, I have many symptoms to deal with. It is sometimes difficult to say which symptom

goes with which disorder. As far as PBC symptoms, I think the worst I have is extreme fatigue, but this is also associated with fibromyalgia. I do not have any pain due to PBC, and fortunately don't have some of the more severe problems such as ascites or varices. There is "brain fog" - again associated with both PBC and fibromyalgia.Sandy C.

[Guest guest]

Ha, ha, ha,,,,,,,I asked if you meant the Arizona Cardinals, DUH! They are a

Football team so I guess none of them would hit a home run!!!

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

Re: [ ] PBC

Patsy, I've been to the site but have never done the chat-line (probably

because my

favorite T.V. show are on those nights). I need to do this.

I'm supposed to go Organ Donation/Transplant Day at the Cardinal Game.this

weekend, My mom gets the ticket (having been transplanted ) but gives them to

us. Tickets normally go to post-transplant pts. & family members who lost a

loved one & donated their organs.

There will be lots of speeches & a booth for organ donor cards to be filled

out. It's really quite moving.

Last year, Eckstein won the game with a walk-off homerun which was

really cool because his brother, sister, & father all have had kidney

transplants

Pat Murray <patsy56er@...> wrote:

, are you part of the PBCers? If not, go to www.pbcers.org and check them

out. They too are an excellent group and they ALL have PBC. Also, these members

are very involved in finding a cure.............and supporting one another.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA