RE: Re: Bacterial cholangitis attack? (TYLENOL)

[Guest guest]

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be takingTylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such agood> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs

and GGTs were somewhat> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was

normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he wouldhave> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his

platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > "Tim Romlein" > > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com > > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial >

> 10/24/2008 05:23 cholangitis attack? > > PM > > > > > > Please respond to > > @ yahoo > > groups.com > > > > > > > > > > > > > > > > > > > > > > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he > > > was shivering and moaning until he fell asleep about half an

hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't > > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to > > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing. > > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks

later until I > > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R > > > > > > > >

[Guest guest]

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be takingTylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such agood> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs

and GGTs were somewhat> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was

normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he wouldhave> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his

platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > "Tim Romlein" > > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com > > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial >

> 10/24/2008 05:23 cholangitis attack? > > PM > > > > > > Please respond to > > @ yahoo > > groups.com > > > > > > > > > > > > > > > > > > > > > > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he > > > was shivering and moaning until he fell asleep about half an

hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't > > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to > > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing. > > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks

later until I > > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R > > > > > > > >

[Guest guest]

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be takingTylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such agood> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs

and GGTs were somewhat> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was

normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he wouldhave> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his

platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > "Tim Romlein" > > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com > > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial >

> 10/24/2008 05:23 cholangitis attack? > > PM > > > > > > Please respond to > > @ yahoo > > groups.com > > > > > > > > > > > > > > > > > > > > > > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he > > > was shivering and moaning until he fell asleep about half an

hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't > > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to > > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing. > > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks

later until I > > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R > > > > > > > >

[Guest guest]

I have to also add that my son's hepatologist at Texas Children's said that we should only give Ibuprophen (motrin) and not Tylenol if we need to give him a pain reliever. Just wanted to chime in!

Becky, mom to Carson (UC/PSC)

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be taking

Tylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such a

good> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he

> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs and GGTs were somewhat

> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he

> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with

> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I

> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief

> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?

> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our

> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he would

have> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.

> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > " Tim Romlein "

> > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com

> > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial > > 10/24/2008 05:23 cholangitis attack?

> > PM > > > > > > Please respond to > > @ yahoo > > groups.com

> > > > > > > > > > > > > > > > > > > >

> > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he

> > > was shivering and moaning until he fell asleep about half an hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't

> > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to

> > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing.

> > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks later until I

> > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R

> > > > > > > >

[Guest guest]

I have to also add that my son's hepatologist at Texas Children's said that we should only give Ibuprophen (motrin) and not Tylenol if we need to give him a pain reliever. Just wanted to chime in!

Becky, mom to Carson (UC/PSC)

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be taking

Tylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such a

good> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he

> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs and GGTs were somewhat

> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he

> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with

> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I

> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief

> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?

> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our

> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he would

have> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.

> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > " Tim Romlein "

> > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com

> > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial > > 10/24/2008 05:23 cholangitis attack?

> > PM > > > > > > Please respond to > > @ yahoo > > groups.com

> > > > > > > > > > > > > > > > > > > >

> > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he

> > > was shivering and moaning until he fell asleep about half an hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't

> > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to

> > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing.

> > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks later until I

> > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R

> > > > > > > >

[Guest guest]

I have to also add that my son's hepatologist at Texas Children's said that we should only give Ibuprophen (motrin) and not Tylenol if we need to give him a pain reliever. Just wanted to chime in!

Becky, mom to Carson (UC/PSC)

My Dad took Tylenol for years for his headaches. He will not touch the stuff now. He believes that the Tylenol contributed a lot to his PSC. Perhaps not but I will not give it to my little girl. Just my comment on Tylenol.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: Re: Bacterial cholangitis attack?

there is a Stomach virus going around out there too right now, as mydaughter had it severe nausea, chills, fatigued she was out of school for 8days. I have been wondering about Tylenol -- should someone with PCS be taking

Tylenol?? That does affect the liver, what about one of the other painreleivers? Just wondering??a in NE PA> > Ok all, I try to keep myself pretty informed and all of you do such a

good> job sharing and posting info. thank you for that, But, now I am a bit> confused. My Tyler age 10 for the past several days has had severe> nausea,> RUQ pain and was extremely cold, fatigued and so on similar to when he

> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.> We saw his Hepatologist yesterday who confirmed there was no liver> inflammation by feeling his belly. His LFTs and GGTs were somewhat

> elevated but not dramatically. His Sed rate was high but the doctor> dismissed this saying it was probably the UC and not the PSC... Ibelieve> this was the liver not his colitis as the pain is very different and he

> has> no problem with going to the bathroom (firm, solid and no blood at all).> No colitis cramping. We know the difference. No fever, however...> > What bothers me is that these doctors believe you do not have pain with

> PSC> and that you should jsut try to live your life to the fullest. But,Tyler> suffers so much when he feels like this. And, I know many of you out> there> understand. He is extremely ill with pain and fatigue, nausea. So, I

> have> a few questions?> > 1. Will the LFT's necessarily be elevated with a cholangitis attack? What> about bilirubin as his was normal?> 2. Can you treat the pain with tylenol? It seemed to provide some relief

> for Tyler...> 3. Now, that he is feeling better today, does it come and go? What do we> watch for?> 4. What are the repercussions of such an attack? Does it get better onits> own?. What is happening to cause the pain? Does it need treatment?

> 5. Does this necessarily mean the PSC is getting worse?> > Please anything you can share will help us as it is so frustrating to see> him suffer and then people shrug it off or do not understand it. Our

> doctor Whittington is suppose to be one of the best (his brother is> Gene Whittington who we do not know) but they do have differing opinions> and are both heavily involved with research so I would think he would

have> more compassion.> > They did the CA-19 which was fine a couple of weeks ago and his platelet> counts are ok ... But, he still gets these violent bloody noses almost> every day or at least every other which again, no one can explain.

> > thanks all for listening and any advise you can give.!!!!> > > At Your Service,> > Stevie Gedgaudas-Ostos> > > > > " Tim Romlein "

> > <tromlein (AT) yahoo (DOT) c > > om> To> > Sent by: @ yahoogroups. com

> > @ yahoo cc> > groups.com > > Subject> > Re: Bacterial > > 10/24/2008 05:23 cholangitis attack?

> > PM > > > > > > Please respond to > > @ yahoo > > groups.com

> > > > > > > > > > > > > > > > > > > >

> > > ... > > > He said he was really cold and that the nausea was coming in wavesthen> > > going away. He had a couple of paracetemols then went to bed and he

> > > was shivering and moaning until he fell asleep about half an hour> later. > > I just rang him at work and he seems better but has dosed up on > > > paracetemol again and said he won't eat anything becasue he doesn't

> > > want anything to make him sick. > > > Does this sound like a cholangitis attack ? > > > > Kate, > > It could very likely be a cholangitis attack. I would urge Brad to

> > report this incident to his doctor (since it seem to be over). Did you > > get his temperature during it? That is something they would be > > interested in knowing.

> > > > When I had my first cholangitis attacks they would present as a > > malaise/fever/ chills that lasted 12 to 18 hours and then I felt fine > > (mostly). Only the same thing would be back 1 or 2 weeks later until I

> > finially saw my doctor and got some antibiotic treatment. > > > > Hope Brad can get his attacks under control quickly. > > > > Tim R

> > > > > > > >

[Guest guest]

Dawn, thanks for the support. Sometimes I think no one understands what Tyler goes through and it is so frustrating...He has suffered more then most healthy adults have ever experienced in their lives. and, some people just do not get it. thanks much....

Stevie OStos

sgedgaud@...

" mdwblaze "

" mdwblaze "

Sent by:

10/30/2008 06:39 AM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack? (TYLENOL)

I have been told multiple times that there is no pain with PSC and in

technical terms there is not. The pain and it is pain appears to come

from your liver enlarging and apply pressure dto other areas.

Irregardless of what actually casues the pain, there is pain. I went

through natural childbirth and it hurt less then when I have a severe

PSC attack! It makes me mad when they downplay our symptoms

I have been told to try and avoid Tylenol as much as possible but

sometimes I have to take products that have it in it. For exaple I

cannot take a lot of migraine medications, but the one that I can take

has Tylenol in it. I was told basically the samething, Not to take

more then the equavalant of 6 tablets per day, that's when it becomes

toxic to the liver.

Dawn

[Guest guest]

Dawn, thanks for the support. Sometimes I think no one understands what Tyler goes through and it is so frustrating...He has suffered more then most healthy adults have ever experienced in their lives. and, some people just do not get it. thanks much....

Stevie OStos

sgedgaud@...

" mdwblaze "

" mdwblaze "

Sent by:

10/30/2008 06:39 AM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack? (TYLENOL)

I have been told multiple times that there is no pain with PSC and in

technical terms there is not. The pain and it is pain appears to come

from your liver enlarging and apply pressure dto other areas.

Irregardless of what actually casues the pain, there is pain. I went

through natural childbirth and it hurt less then when I have a severe

PSC attack! It makes me mad when they downplay our symptoms

I have been told to try and avoid Tylenol as much as possible but

sometimes I have to take products that have it in it. For exaple I

cannot take a lot of migraine medications, but the one that I can take

has Tylenol in it. I was told basically the samething, Not to take

more then the equavalant of 6 tablets per day, that's when it becomes

toxic to the liver.

Dawn

[Guest guest]

Actually, the recommended maximum dose is 4 g in adults (12 - 325 mg tablets)

and 90 mg/kg in children. The toxic dose is 150 mg/kg (about 7 g in adults - 21

325 mg tablets) - http://www.emedicine.com/emerg/topic819.htm

Tylenol is harmful to your liver, but Ibuprofen (Advil, Motrin, etc.) is

processed by the kidneys, which can also be stressed by PSC. I take

ibuprofen, when I need it - mostly because acetaminophen doesn't do anything

for me. My hep would prefer I take Tylenol, but he's OK with ibuprofen as

long as I don't exceed the package dosage instructions.

Sorry, no perfect answers - EVERY medication has a down side.

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

-----------------------------

....6 tablets per day, that's when it becomes toxic to the liver

[Guest guest]

Actually, the recommended maximum dose is 4 g in adults (12 - 325 mg tablets)

and 90 mg/kg in children. The toxic dose is 150 mg/kg (about 7 g in adults - 21

325 mg tablets) - http://www.emedicine.com/emerg/topic819.htm

Tylenol is harmful to your liver, but Ibuprofen (Advil, Motrin, etc.) is

processed by the kidneys, which can also be stressed by PSC. I take

ibuprofen, when I need it - mostly because acetaminophen doesn't do anything

for me. My hep would prefer I take Tylenol, but he's OK with ibuprofen as

long as I don't exceed the package dosage instructions.

Sorry, no perfect answers - EVERY medication has a down side.

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

-----------------------------

....6 tablets per day, that's when it becomes toxic to the liver

[Guest guest]



Another opinion... 's GI limits his Tylenol to 1,000 mg per day. He prefers avoidance of Ibuprofen and NSAIDs due to the effects on bowels with UC.

Joanne H'

(, Ca., mom of , 18, UC./PSC 2-06; JRA 98)

-----Original Message-----From: [mailto: ]On Behalf Of stonehollowmn@...Sent: Thursday, October 30, 2008 8:34 AMTo: Subject: Re: Re: Bacterial cholangitis attack? (TYLENOL)

Actually, the recommended maximum dose is 4 g in adults (12 - 325 mg tablets) and 90 mg/kg in children. The toxic dose is 150 mg/kg (about 7 g in adults - 21 325 mg tablets) - http://www.emedicine.com/emerg/topic819.htmTylenol is harmful to your liver, but Ibuprofen (Advil, Motrin, etc.) is processed by the kidneys, which can also be stressed by PSC. I takeibuprofen, when I need it - mostly because acetaminophen doesn't do anythingfor me. My hep would prefer I take Tylenol, but he's OK with ibuprofen aslong as I don't exceed the package dosage instructions.Sorry, no perfect answers - EVERY medication has a down side.Arne56 - UC 1977, PSC 2000Alive and well in Minnesota-----------------------------...6 tablets per day, that's when it becomes toxic to the liver

[Guest guest]



Another opinion... 's GI limits his Tylenol to 1,000 mg per day. He prefers avoidance of Ibuprofen and NSAIDs due to the effects on bowels with UC.

Joanne H'

(, Ca., mom of , 18, UC./PSC 2-06; JRA 98)

-----Original Message-----From: [mailto: ]On Behalf Of stonehollowmn@...Sent: Thursday, October 30, 2008 8:34 AMTo: Subject: Re: Re: Bacterial cholangitis attack? (TYLENOL)

Actually, the recommended maximum dose is 4 g in adults (12 - 325 mg tablets) and 90 mg/kg in children. The toxic dose is 150 mg/kg (about 7 g in adults - 21 325 mg tablets) - http://www.emedicine.com/emerg/topic819.htmTylenol is harmful to your liver, but Ibuprofen (Advil, Motrin, etc.) is processed by the kidneys, which can also be stressed by PSC. I takeibuprofen, when I need it - mostly because acetaminophen doesn't do anythingfor me. My hep would prefer I take Tylenol, but he's OK with ibuprofen aslong as I don't exceed the package dosage instructions.Sorry, no perfect answers - EVERY medication has a down side.Arne56 - UC 1977, PSC 2000Alive and well in Minnesota-----------------------------...6 tablets per day, that's when it becomes toxic to the liver

[Guest guest]

>>>that my son's hepatologist at Texas Children's

said that we should only give Ibuprophen (motrin) and not Tylenol<<<

My daughter’s hep. said that she can’t take

ibuprophen because of the UC (says that the ibuprophen aggravates the UC

somehow) but that any damage Tylenol does depends on a body weight to dose

ratio …

I only give it to her when she is in serious pain…and

thankfully I haven’t had to give her any in a very long time…but I

have always hated giving it to her.

In Christ,

Bethany Hunt

" Blessed be the Lord, who daily loadeth us with benefits,

even the God of our salvation. Selah. " Psalm 68:19

[Guest guest]

>>>that my son's hepatologist at Texas Children's

said that we should only give Ibuprophen (motrin) and not Tylenol<<<

My daughter’s hep. said that she can’t take

ibuprophen because of the UC (says that the ibuprophen aggravates the UC

somehow) but that any damage Tylenol does depends on a body weight to dose

ratio …

I only give it to her when she is in serious pain…and

thankfully I haven’t had to give her any in a very long time…but I

have always hated giving it to her.

In Christ,

Bethany Hunt

" Blessed be the Lord, who daily loadeth us with benefits,

even the God of our salvation. Selah. " Psalm 68:19

[Guest guest]

>>> cannot believe a doctor told you there is no

pain with PSC<<<

My daughter is 10 years old, and has had PSC and UC since

she was five…the doctors maintain that dark circles under her eyes and

pain is not PSC related…they say that the pain is all from UC and the

dark circles must be allergies…however when she says that her liver

hurts, she gets dark circles under her eyes and she becomes very lethargic, and

during those times her liver levels are up…it is certainly boggling how

the doctors are so sure that PSC doesn’t cause this! When so many have

expressed these symptoms! <sigh> I suppose that is why they call it

medical *practice*

In Christ,

Bethany Hunt

" Blessed be the Lord, who daily loadeth us with benefits,

even the God of our salvation. Selah. " Psalm 68:19

[Guest guest]

Bethany, yes exactly. Tyler too has those horrible black circles under his eyes and intense pain. And he is soo tired. Same thing, and I am tired of them saying it is the UC. No, the UC is under control. And, why are his LFT's, SED and GGT elevated at the tiem of the pain if there is nothing going on in the ducts... Frustrated!!!!!Stevie Ostossgedgaud@... " Bethany Hunt " Sent by: 10/31/2008 05:08 AMPlease respond to To< >ccSubjectRE: Re: Bacterial cholangitis attack? (TYLENOL)>>> cannot believe a doctor told you there is no pain with PSC<<< My daughter is 10 years old, and has had PSC and UC since she was five…the doctors maintain that dark circles under her eyes and pain is not PSC related…they say that the pain is all from UC and the dark circles must be allergies…however when she says that her liver hurts, she gets dark circles under her eyes and she becomes very lethargic, and during those times her liver levels are up…it is certainly boggling how the doctors are so sure that PSC doesn’t cause this! When so many have expressed these symptoms! <sigh> I suppose that is why they call it medical *practice* In Christ, Bethany Hunt " Blessed be the Lord, who daily loadeth us with benefits, even the God of our salvation. Selah. " Psalm 68:19

[Guest guest]

Bethany, yes exactly. Tyler too has those horrible black circles under his eyes and intense pain. And he is soo tired. Same thing, and I am tired of them saying it is the UC. No, the UC is under control. And, why are his LFT's, SED and GGT elevated at the tiem of the pain if there is nothing going on in the ducts... Frustrated!!!!!Stevie Ostossgedgaud@... " Bethany Hunt " Sent by: 10/31/2008 05:08 AMPlease respond to To< >ccSubjectRE: Re: Bacterial cholangitis attack? (TYLENOL)>>> cannot believe a doctor told you there is no pain with PSC<<< My daughter is 10 years old, and has had PSC and UC since she was five…the doctors maintain that dark circles under her eyes and pain is not PSC related…they say that the pain is all from UC and the dark circles must be allergies…however when she says that her liver hurts, she gets dark circles under her eyes and she becomes very lethargic, and during those times her liver levels are up…it is certainly boggling how the doctors are so sure that PSC doesn’t cause this! When so many have expressed these symptoms! <sigh> I suppose that is why they call it medical *practice* In Christ, Bethany Hunt " Blessed be the Lord, who daily loadeth us with benefits, even the God of our salvation. Selah. " Psalm 68:19