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[Guest guest]

Hello,

My husband has PSC. They used to just do an ERCP on him when he had

problems and it would be fixed. The last time though they said they

couldn't do anything with the ERCP. They sent us to the liver

specialist and put him on cipro. It worked for a couple weeks and

then they put him on Amoxi/clav when he was getting a fever again.

The fever went down but he's really nauseated and jaundiced. This is

the third time this year. When he gets well for a while we start

believing he'll be ok and not need transplant for a while, but then

he gets worse again. I don't know how much longer I can stand the

roller coaster. In 2005 they told us the PSC was so mild that it

wasn't even a sure diagnosis. Then they told us he needed a

transplant last month. Forget the 10 years to transplant and try 2.

We freaked out. Then the liver specialist they refer us to says just

wait and see, he's not that sick yet... And then he's sick again.

3rd time this year. I'm freaking out because nothing is working, or

doesn't work permenantly. I'd take him to the hospital but they

can't do anything we can't really, and it just makes him depressed.

There is so much he wants to do right now and can't.

-Suezzie

[Guest guest]

Suzanne, sorry you had to find our website, but a good

thing you did. I know when I first found out about

the disease, I read up on it at the Library and

freaked out because all the information was bleak.

Then I found this site and I have come to know that

even though we are sick, we have to learn to cope with

it the best we can. Since you are the spouse, you

will most likely be the active adcovate for your

husband. Push the doctors, make them make decisions

and try different things. I often hear about

something here, and then call my hep and tell them,

and we decide to try it. It's a lot of hit and miss,

and feeling poorly and then okay, then boom, even

worse. It is a roller-coaster ride!

Cindy Baudoux-Northrup

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[Guest guest]

HI Suzanne;

I'm so sorry to hear about your husband's health problems.

The " Amoxi/clav " phrase caught my eye ... is it possible that he may

be having a bad reaction to this particular antibiotic combination?

Although rare, there have been reports of liver toxicity associated

with this combination.

Gut. 1992 Mar;33(3):368-71.

Hepatitis associated with amoxycillin-clavulanic acid combination

report of 15 cases.

Larrey D, Vial T, Micaleff A, Babany G, Morichau-Beauchant M, Michel

H, Benhamou JP

Service des Maladies de l'Appareil Digestif, Hopital Saint-Eloi,

Montpellier, France.

Fifteen cases of hepatitis related to a combination of amoxycillin

and clavulanic acid are reported. Most patients were aged 60 years or

more and there were more men than women (sex ratio 4:1). The

amoxycillin-clavulanic acid had been given at doses ranging from 0.5

to 6 g/day (mean 2 g/day) for seven to 60 days (mean 18 days). In 11

cases, the first symptoms appeared one to four weeks after stopping

treatment. Jaundice was observed in all patients and was frequently

associated with pruritus. Serum aminotransferase activities were

increased in all patients and were generally two to 10 times the

upper limit of normal. Serum alkaline phosphatase activity was

considerably increased, from two to seven times the upper limit of

normal. Histological examination of the liver, performed in seven

patients, showed centri- or panlobular cholestasis in all cases,

associated with granulomatous hepatitis in one. The prognosis of

amoxycillin-clavulanic acid induced hepatitis seemed to be good. None

of the patients exhibited biological or clinical features of hepatic

failure and the course of the disease was characterised by the

resolution of jaundice within one to eight weeks and a complete

recovery within four to 16 weeks. Taking into account the number of

treated subjects and reported cases, we estimated the risk of

developing hepatitis with this drug combination to be very low,

probably below 1/100,000. Our data suggest that the risk of

hepatotoxicity may be increased in elderly men given lengthy

treatment. The association of hepatitis and signs of hypersensitivity

may suggest an immunoallergic mechanism of hepatotoxicity in some

patients. PMID: 1568657.

This would be something to bring up to your husband's doctor as it

sounds like the nausea and jaundice began after taking " Amoxi/clav " ?

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

I too am sorry that you and your family are dealing with this

rollercoaster called PSC. I totally understand the craziness of what

your going through. My husband was diagnosed in 94, I think. He

didn't think much of it, only that someday he may need a trasplant.

Then 2 years ago he went from no symptoms to " attacks " every other

month. In June of 06 he was listed at the Starzel clinic at UPMC. On

January 07 we got the call that we all want to hear, in dealing with

PSC. At the risk of putting my foot in it...and I do it all the

time... it sound like his doctors may not be as on top of things as

one might hope. The good news is everyone here will have good

feedback for you. I for one would look high and low for a specialist

in PSC, and I can not say enough about UPMC. However, UPMC has a

policy of no transplant if cancer appears. I do not think all clinics

feel that way. I have heard nothing but awesome things concerning the

Mayo clinic in Minnesota. If you have any questions or just need an

ear, please feel free to contact me.

Litsayn@...

God Bless

Litsa

>

> Hello,

>

> My husband has PSC. They used to just do an ERCP on him when he

had

> problems and it would be fixed. The last time though they said

they

> couldn't do anything with the ERCP. They sent us to the liver

> specialist and put him on cipro. It worked for a couple weeks and

> then they put him on Amoxi/clav when he was getting a fever again.

> The fever went down but he's really nauseated and jaundiced. This

is

> the third time this year. When he gets well for a while we start

> believing he'll be ok and not need transplant for a while, but then

> he gets worse again. I don't know how much longer I can stand the

> roller coaster. In 2005 they told us the PSC was so mild that it

> wasn't even a sure diagnosis. Then they told us he needed a

> transplant last month. Forget the 10 years to transplant and try

2.

> We freaked out. Then the liver specialist they refer us to says

just

> wait and see, he's not that sick yet... And then he's sick again.

> 3rd time this year. I'm freaking out because nothing is working,

or

> doesn't work permenantly. I'd take him to the hospital but they

> can't do anything we can't really, and it just makes him

depressed.

> There is so much he wants to do right now and can't.

>

> -Suezzie

>

[Guest guest]

My husband and I were going through that E ticket ride ourselves about

ten years ago this month and there were times that I was holding my

breath dreading the fact that my beeper might go off. I was in and

out of the hospital so many times I lost count, but here I am, still

doing well with my own liver with the full knowledge that this can

change at any time. I don't think that PSC follows the rules. It

varies so much from person to person that any prognostications are

only an educated guess. There are so may variables that no one can

truly predict what will happen for each of us, but the one thing that

is 100% predictable is that you will both find support and help here.

Penny

>

> Hello, I don't know how much longer I can stand the

> roller coaster. In 2005 they told us the PSC was so mild that it

> wasn't even a sure diagnosis. Then they told us he needed a

> transplant last month. Forget the 10 years to transplant and try 2.

> We freaked out. Then the liver specialist they refer us to says just

> wait and see, he's not that sick yet... And then he's sick again.

> 3rd time this year.

> -Suezzie

>

[Guest guest]

Dave,

Thanks for the heads up. He was only slightly nauseated before

taking the amoxi/clav, and then the day after he started he was

really nauseated. However, the jaundice started before the

amoxi/clav. Add that to the fact that by Sunday he was feeling fine

and the jaundice was fading, and he's only 27. Doesn't seem to match

up, but thanks for the information. I'm just glad he's feeling

better... for now?!?

-Suzanne

>

> HI Suzanne;

>

> I'm so sorry to hear about your husband's health problems.

> The " Amoxi/clav " phrase caught my eye ... is it possible that he

may

> be having a bad reaction to this particular antibiotic combination?

> Although rare, there have been reports of liver toxicity associated

> with this combination.

>

> Gut. 1992 Mar;33(3):368-71.

>

> Hepatitis associated with amoxycillin-clavulanic acid combination

> report of 15 cases.

>

> Larrey D, Vial T, Micaleff A, Babany G, Morichau-Beauchant M,

Michel

> H, Benhamou JP

>

> Service des Maladies de l'Appareil Digestif, Hopital Saint-Eloi,

> Montpellier, France.

>

> Fifteen cases of hepatitis related to a combination of amoxycillin

> and clavulanic acid are reported. Most patients were aged 60 years

or

> more and there were more men than women (sex ratio 4:1). The

> amoxycillin-clavulanic acid had been given at doses ranging from

0.5

> to 6 g/day (mean 2 g/day) for seven to 60 days (mean 18 days). In

11

> cases, the first symptoms appeared one to four weeks after stopping

> treatment. Jaundice was observed in all patients and was frequently

> associated with pruritus. Serum aminotransferase activities were

> increased in all patients and were generally two to 10 times the

> upper limit of normal. Serum alkaline phosphatase activity was

> considerably increased, from two to seven times the upper limit of

> normal. Histological examination of the liver, performed in seven

> patients, showed centri- or panlobular cholestasis in all cases,

> associated with granulomatous hepatitis in one. The prognosis of

> amoxycillin-clavulanic acid induced hepatitis seemed to be good.

None

> of the patients exhibited biological or clinical features of

hepatic

> failure and the course of the disease was characterised by the

> resolution of jaundice within one to eight weeks and a complete

> recovery within four to 16 weeks. Taking into account the number of

> treated subjects and reported cases, we estimated the risk of

> developing hepatitis with this drug combination to be very low,

> probably below 1/100,000. Our data suggest that the risk of

> hepatotoxicity may be increased in elderly men given lengthy

> treatment. The association of hepatitis and signs of

hypersensitivity

> may suggest an immunoallergic mechanism of hepatotoxicity in some

> patients. PMID: 1568657.

>

> This would be something to bring up to your husband's doctor as it

> sounds like the nausea and jaundice began after taking " Amoxi/clav " ?

>

> Best regards,

>

> Dave

> (father of (21); PSC 07/03; UC 08/03)

>

[Guest guest]

His old doctor was a gastroenterologist (from ulcerative colitis) but

he has recently been referred to a guy at University Hospital of

Denver who seems to be a PSC specialist. Heck, he's talking at that

conference this month. I just don't think that this new guy had

looked at all the stuff from radiology yet because he seemed healthy

at his first appointment. He was surprised he got sick last weekend,

he thought he'd be ok for a couple months. But the cipro worked

wonders in the first week, he was whiter than normal when he saw

him. His billiruben tested at 25 Friday, so he also seemed surprised

that the amoxi/clav took care of it. I guess I'm going to have to

razz this guy until he takes a look at all the junk they did at the

other hospital so he'll be unsurprised...

On a good note, we've already been told theres no malignancy.

-Suzanne

> >

> > Hello,

> >

> > My husband has PSC. They used to just do an ERCP on him when he

> had

> > problems and it would be fixed. The last time though they said

> they

> > couldn't do anything with the ERCP. They sent us to the liver

> > specialist and put him on cipro. It worked for a couple weeks

and

> > then they put him on Amoxi/clav when he was getting a fever

again.

> > The fever went down but he's really nauseated and jaundiced.

This

> is

> > the third time this year. When he gets well for a while we start

> > believing he'll be ok and not need transplant for a while, but

then

> > he gets worse again. I don't know how much longer I can stand

the

> > roller coaster. In 2005 they told us the PSC was so mild that it

> > wasn't even a sure diagnosis. Then they told us he needed a

> > transplant last month. Forget the 10 years to transplant and try

> 2.

> > We freaked out. Then the liver specialist they refer us to says

> just

> > wait and see, he's not that sick yet... And then he's sick

again.

> > 3rd time this year. I'm freaking out because nothing is working,

> or

> > doesn't work permenantly. I'd take him to the hospital but they

> > can't do anything we can't really, and it just makes him

> depressed.

> > There is so much he wants to do right now and can't.

> >

> > -Suezzie

> >

>