[Guest guest]

I am sure glad that your surgery is over with and you are on the mend.Take it easy though and don't over do, we don't want ANYMORE sick lupies for now.

a

[Guest guest]

I am sure glad that your surgery is over with and you are on the mend.Take it easy though and don't over do, we don't want ANYMORE sick lupies for now.

a

[Guest guest]

Hi , I don't think it is the Plaquenil in my case. I had the

rash before they put me on the Plaquenil. I have thought about it

may be making the rash worse, but I don't know ? What kind of

medication are you on since you can't use Plaquenil ? They were

talking about putting me on something else at one time but I forgot

what it was called.

Lynn

[Guest guest]

I am one sore lady!!! Have been for several days (hmm going on a couple of weeks when I think about it). Hubby and I went golfing with daughter and sil yesterday. It didn't help with the pain but since I hurt anyway I might as well do something I enjoy. We played 18 holes, got some sun (which usually doesn't bother me if I wear sunscreen), drank a few beers (I got permission from Rhuemy), went to a local bar/gril that sells great chargrilled burgers and had something to eat, then went for a ride in the ritzy area and saw homes that look like castles. I'd just like the money it takes to furnish them. LOL Got home around 10:00 p.m. and then had the 1st night in months where I couldn't sleep worth a damn.

I don't know if you saw my posts about the uti I had/have. I've finished the antibiotic and have the test run again on Tue. I didn't even realize I had a problem. Rhuemy never contacted me about it, notification came from pcp. I see Rhuemy on Thurs and we are going to have a talk!

I understand the bored. You have got to be so limited in the things you can do. Almost everything requires 2 arms unless you have had extensive pt to teach you to get along with 1. Hope you stocked up on a lot of books. You seem to be typing pretty good. Are you sure you are doing that with one hand? Playing a lot of computer games are you? Wish I lived nearby, I'd pick you up and we would do something dumb which usually turns out to be fun.

barb

"(Brat)" wrote:

How are you doing this weekend? I am getting soooooo bored! Can't wait til I can drive!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies __________________________________________________

[Guest guest]

I am one sore lady!!! Have been for several days (hmm going on a couple of weeks when I think about it). Hubby and I went golfing with daughter and sil yesterday. It didn't help with the pain but since I hurt anyway I might as well do something I enjoy. We played 18 holes, got some sun (which usually doesn't bother me if I wear sunscreen), drank a few beers (I got permission from Rhuemy), went to a local bar/gril that sells great chargrilled burgers and had something to eat, then went for a ride in the ritzy area and saw homes that look like castles. I'd just like the money it takes to furnish them. LOL Got home around 10:00 p.m. and then had the 1st night in months where I couldn't sleep worth a damn.

I don't know if you saw my posts about the uti I had/have. I've finished the antibiotic and have the test run again on Tue. I didn't even realize I had a problem. Rhuemy never contacted me about it, notification came from pcp. I see Rhuemy on Thurs and we are going to have a talk!

I understand the bored. You have got to be so limited in the things you can do. Almost everything requires 2 arms unless you have had extensive pt to teach you to get along with 1. Hope you stocked up on a lot of books. You seem to be typing pretty good. Are you sure you are doing that with one hand? Playing a lot of computer games are you? Wish I lived nearby, I'd pick you up and we would do something dumb which usually turns out to be fun.

barb

"(Brat)" wrote:

How are you doing this weekend? I am getting soooooo bored! Can't wait til I can drive!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies __________________________________________________

[Guest guest]

I am one sore lady!!! Have been for several days (hmm going on a couple of weeks when I think about it). Hubby and I went golfing with daughter and sil yesterday. It didn't help with the pain but since I hurt anyway I might as well do something I enjoy. We played 18 holes, got some sun (which usually doesn't bother me if I wear sunscreen), drank a few beers (I got permission from Rhuemy), went to a local bar/gril that sells great chargrilled burgers and had something to eat, then went for a ride in the ritzy area and saw homes that look like castles. I'd just like the money it takes to furnish them. LOL Got home around 10:00 p.m. and then had the 1st night in months where I couldn't sleep worth a damn.

I don't know if you saw my posts about the uti I had/have. I've finished the antibiotic and have the test run again on Tue. I didn't even realize I had a problem. Rhuemy never contacted me about it, notification came from pcp. I see Rhuemy on Thurs and we are going to have a talk!

I understand the bored. You have got to be so limited in the things you can do. Almost everything requires 2 arms unless you have had extensive pt to teach you to get along with 1. Hope you stocked up on a lot of books. You seem to be typing pretty good. Are you sure you are doing that with one hand? Playing a lot of computer games are you? Wish I lived nearby, I'd pick you up and we would do something dumb which usually turns out to be fun.

barb

"(Brat)" wrote:

How are you doing this weekend? I am getting soooooo bored! Can't wait til I can drive!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies __________________________________________________

[Guest guest]

here you go lol

[Guest guest]

here you go lol

[Guest guest]

here you go lol

[Guest guest]

,

You re the one who lives in Keller.....right? If you are not on Secure Horizons insurance I suggest trying to Get in to The Osteopathic Medical Center Of Fort Worth at 1000 Montgomery Street 76107

Phone # (817) 731- 4311

There are some good doctors there...that's where I used to go before they all dropped my insurance.

,I am so sorry that you are having such a tough time! I do not know anything about the Plaquenil but soonwill because I am getting ready to start it. I willpray that you find some relief and a sympathetic Dr! Hang in there and if there is anything I can do fromOhio please let me know!Love,Nikki--- dcgaconnier wrote:> Hey all, I was just wondering if any of you have> had any unusual > side effects from Plaquinel? I know this may be a> stretch, but I am > finding myself getting very aggitated easily and> weepy. I am not > depressed. But all of a sudden I will get teary or> sad. GO > figure. I do take Effexor adn it works really well.> The Plaquinil > is the only thing I have added in the last 3 months.> I have only > been taking it for 3 months.> > Ok - also, I am in moderate to severe pain (joints> and muscular) > almost daily as many of you are also. I can not get> my doctors to > help me find any form of serious pain relief> system/or medication. > I finally couldnt take it any more and called> myRhuemy and asked for > some pain medication and he called in some Vicodin. > Guess how > many...3 tablets. Can you believe that. Yes, I> started bawling > like a baby and thought ...this is hopeless, I am in> pain and need > help and seriously do not know what to do.> ANy of you experience anything like this?> Hugs to all - in Texas> > > __________________________________________________

[Guest guest]

,

You re the one who lives in Keller.....right? If you are not on Secure Horizons insurance I suggest trying to Get in to The Osteopathic Medical Center Of Fort Worth at 1000 Montgomery Street 76107

Phone # (817) 731- 4311

There are some good doctors there...that's where I used to go before they all dropped my insurance.

,I am so sorry that you are having such a tough time! I do not know anything about the Plaquenil but soonwill because I am getting ready to start it. I willpray that you find some relief and a sympathetic Dr! Hang in there and if there is anything I can do fromOhio please let me know!Love,Nikki--- dcgaconnier wrote:> Hey all, I was just wondering if any of you have> had any unusual > side effects from Plaquinel? I know this may be a> stretch, but I am > finding myself getting very aggitated easily and> weepy. I am not > depressed. But all of a sudden I will get teary or> sad. GO > figure. I do take Effexor adn it works really well.> The Plaquinil > is the only thing I have added in the last 3 months.> I have only > been taking it for 3 months.> > Ok - also, I am in moderate to severe pain (joints> and muscular) > almost daily as many of you are also. I can not get> my doctors to > help me find any form of serious pain relief> system/or medication. > I finally couldnt take it any more and called> myRhuemy and asked for > some pain medication and he called in some Vicodin. > Guess how > many...3 tablets. Can you believe that. Yes, I> started bawling > like a baby and thought ...this is hopeless, I am in> pain and need > help and seriously do not know what to do.> ANy of you experience anything like this?> Hugs to all - in Texas> > > __________________________________________________

[Guest guest]

,

You re the one who lives in Keller.....right? If you are not on Secure Horizons insurance I suggest trying to Get in to The Osteopathic Medical Center Of Fort Worth at 1000 Montgomery Street 76107

Phone # (817) 731- 4311

There are some good doctors there...that's where I used to go before they all dropped my insurance.

,I am so sorry that you are having such a tough time! I do not know anything about the Plaquenil but soonwill because I am getting ready to start it. I willpray that you find some relief and a sympathetic Dr! Hang in there and if there is anything I can do fromOhio please let me know!Love,Nikki--- dcgaconnier wrote:> Hey all, I was just wondering if any of you have> had any unusual > side effects from Plaquinel? I know this may be a> stretch, but I am > finding myself getting very aggitated easily and> weepy. I am not > depressed. But all of a sudden I will get teary or> sad. GO > figure. I do take Effexor adn it works really well.> The Plaquinil > is the only thing I have added in the last 3 months.> I have only > been taking it for 3 months.> > Ok - also, I am in moderate to severe pain (joints> and muscular) > almost daily as many of you are also. I can not get> my doctors to > help me find any form of serious pain relief> system/or medication. > I finally couldnt take it any more and called> myRhuemy and asked for > some pain medication and he called in some Vicodin. > Guess how > many...3 tablets. Can you believe that. Yes, I> started bawling > like a baby and thought ...this is hopeless, I am in> pain and need > help and seriously do not know what to do.> ANy of you experience anything like this?> Hugs to all - in Texas> > > __________________________________________________

[Guest guest]

>

> Hi.

>

> Does anyone have a recipe for a muffin containing cooked lentils or

> black-eyed peas?

>

> TIA,

>

> Debbie

>

Black eyed peas are illegal. Check o the BTVC site.

Carol F.

[Guest guest]

>

> Hi.

>

> Does anyone have a recipe for a muffin containing cooked lentils or

> black-eyed peas?

>

> TIA,

>

> Debbie

>

Black eyed peas are illegal. Check o the BTVC site.

Carol F.

[Guest guest]

>

> Hi.

>

> Does anyone have a recipe for a muffin containing cooked lentils or

> black-eyed peas?

>

> TIA,

>

> Debbie

>

Black eyed peas are illegal. Check o the BTVC site.

Carol F.

[Guest guest]

-----Original

Message-----

I still don't understand why acetaminophen (Tylenol) is

preferred over ibuprofen (Advil/Motrin) for PSC. Anyone have an idea why

they recommend acetaminophen? I cannot find anything on the internet that

would suggest that, other than for those with Hep C.

Hep C – but underlines

why….

http://www.hepatitis-central.com/hcv/hepatitis/ibuprofen.html

Web

MD - http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166 & drugname=Ibup...

http://www.pkids.org/pdf/phr/08-06whichpainkiller.pdf

Ibuprofen is a member of the propionic

acid class of NSAID. We report a 35-year-old man with

ibuprofen-induced acute severe cholestatic liver injury. He

recovered after seven months.

http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2005;volume=24;issue=2;spage=77;epage=78;aulast=Tyagi

One reason for this is that the risk of bleeding is 50 to

100 times as great as the risk of liver disease to start with, and that it is

known that ibuprofen can double or triple the risk of bleeding. http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0A960958260 & sec= & spon= & pagewanted=2

Want more info?

Google for Ibuprofen

& liver disease - 554,000

HTH Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

My son's GI recommended tylenol over motrin/advil also- actually both

his GIs and all of the hepatologists as well (we have been sent to

several centers around the country for opinions). I know for me and

for my son (who has the PSC) because we both have a genetic condition

(HHT) with greatly increased bleeding risks and GI + other bleeding

chronically we are not allowed to have any motrin/advil or any type of

blood thinnner, including asprin and other rxs because it increases

bleeding. Maybe that is why it is not recommended for liver patients,

because it increases bleeding ? I know tylenol in HIGH doses can be

harmful to the liver but so can advil/motrin.

Lori

lucky mom blessed with triplets

-- In , " Barb Henshaw "

wrote:

>

> -----Original Message-----

> I still don't understand why acetaminophen (Tylenol) is preferred over

> ibuprofen (Advil/Motrin) for PSC. Anyone have an idea why they

> recommend acetaminophen? I cannot find anything on the internet that

> would suggest that, other than for those with Hep C.

>

> Hep C - but underlines why..

> http://www.hepatitis-central.com/hcv/hepatitis/ibuprofen.html

>

> Web MD -

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166&

> drugname=Ibup> &drugname=Ibup...

>

> http://www.pkids.org/pdf/phr/08-06whichpainkiller.pdf

>

> Ibuprofen is a member of the propionic acid class of NSAID. We report a

> 35-year-old man with ibuprofen-induced acute severe cholestatic liver

> injury. He recovered after seven months.

>

> http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2005;volume

> =24;issue=2;spage=77;epage=78;aulast=Tyagi

>

> One reason for this is that the risk of bleeding is 50 to 100 times as

> great as the risk of liver disease to start with, and that it is known

> that ibuprofen can double or triple the risk of bleeding.

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0A

> 960958260

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0

> A960958260&sec=&spon=&pagewanted=2> &sec=&spon=&pagewanted=2

>

> Want more info? Google for

> http://www.google.com/url?q=http://www.answers.com/ibuprofen&r=67&sa=X&

> oi=dict&ct=D&cd=1&usg=AFQjCNFNjs4uwZ7qZr6m-73PJEObcfBgvw> Ibuprofen &

> http://www.google.com/url?q=http://www.answers.com/liver&r=67&sa=X&oi=d

> ict&ct=D&cd=2&usg=AFQjCNELJo0CbOqt8sN9dZ0JXEsHNC0veA> liver

> http://www.google.com/url?q=http://www.answers.com/disease&r=67&sa=X&oi

> =dict&ct=D&cd=3&usg=AFQjCNHWIB8heOFpEBXN5X_M8X7f652SWg> disease -

> 554,000

>

> HTH Barb in Texas - Together in the Fight - Whatever it Takes!

> Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

>

[Guest guest]

My son's GI recommended tylenol over motrin/advil also- actually both

his GIs and all of the hepatologists as well (we have been sent to

several centers around the country for opinions). I know for me and

for my son (who has the PSC) because we both have a genetic condition

(HHT) with greatly increased bleeding risks and GI + other bleeding

chronically we are not allowed to have any motrin/advil or any type of

blood thinnner, including asprin and other rxs because it increases

bleeding. Maybe that is why it is not recommended for liver patients,

because it increases bleeding ? I know tylenol in HIGH doses can be

harmful to the liver but so can advil/motrin.

Lori

lucky mom blessed with triplets

-- In , " Barb Henshaw "

wrote:

>

> -----Original Message-----

> I still don't understand why acetaminophen (Tylenol) is preferred over

> ibuprofen (Advil/Motrin) for PSC. Anyone have an idea why they

> recommend acetaminophen? I cannot find anything on the internet that

> would suggest that, other than for those with Hep C.

>

> Hep C - but underlines why..

> http://www.hepatitis-central.com/hcv/hepatitis/ibuprofen.html

>

> Web MD -

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166&

> drugname=Ibup> &drugname=Ibup...

>

> http://www.pkids.org/pdf/phr/08-06whichpainkiller.pdf

>

> Ibuprofen is a member of the propionic acid class of NSAID. We report a

> 35-year-old man with ibuprofen-induced acute severe cholestatic liver

> injury. He recovered after seven months.

>

> http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2005;volume

> =24;issue=2;spage=77;epage=78;aulast=Tyagi

>

> One reason for this is that the risk of bleeding is 50 to 100 times as

> great as the risk of liver disease to start with, and that it is known

> that ibuprofen can double or triple the risk of bleeding.

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0A

> 960958260

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0

> A960958260&sec=&spon=&pagewanted=2> &sec=&spon=&pagewanted=2

>

> Want more info? Google for

> http://www.google.com/url?q=http://www.answers.com/ibuprofen&r=67&sa=X&

> oi=dict&ct=D&cd=1&usg=AFQjCNFNjs4uwZ7qZr6m-73PJEObcfBgvw> Ibuprofen &

> http://www.google.com/url?q=http://www.answers.com/liver&r=67&sa=X&oi=d

> ict&ct=D&cd=2&usg=AFQjCNELJo0CbOqt8sN9dZ0JXEsHNC0veA> liver

> http://www.google.com/url?q=http://www.answers.com/disease&r=67&sa=X&oi

> =dict&ct=D&cd=3&usg=AFQjCNHWIB8heOFpEBXN5X_M8X7f652SWg> disease -

> 554,000

>

> HTH Barb in Texas - Together in the Fight - Whatever it Takes!

> Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

>

[Guest guest]

My son's GI recommended tylenol over motrin/advil also- actually both

his GIs and all of the hepatologists as well (we have been sent to

several centers around the country for opinions). I know for me and

for my son (who has the PSC) because we both have a genetic condition

(HHT) with greatly increased bleeding risks and GI + other bleeding

chronically we are not allowed to have any motrin/advil or any type of

blood thinnner, including asprin and other rxs because it increases

bleeding. Maybe that is why it is not recommended for liver patients,

because it increases bleeding ? I know tylenol in HIGH doses can be

harmful to the liver but so can advil/motrin.

Lori

lucky mom blessed with triplets

-- In , " Barb Henshaw "

wrote:

>

> -----Original Message-----

> I still don't understand why acetaminophen (Tylenol) is preferred over

> ibuprofen (Advil/Motrin) for PSC. Anyone have an idea why they

> recommend acetaminophen? I cannot find anything on the internet that

> would suggest that, other than for those with Hep C.

>

> Hep C - but underlines why..

> http://www.hepatitis-central.com/hcv/hepatitis/ibuprofen.html

>

> Web MD -

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166

> http://www.webmd.com/drugs/mono-9368-IBUPROFEN+-+ORAL.aspx?drugid=5166&

> drugname=Ibup> &drugname=Ibup...

>

> http://www.pkids.org/pdf/phr/08-06whichpainkiller.pdf

>

> Ibuprofen is a member of the propionic acid class of NSAID. We report a

> 35-year-old man with ibuprofen-induced acute severe cholestatic liver

> injury. He recovered after seven months.

>

> http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2005;volume

> =24;issue=2;spage=77;epage=78;aulast=Tyagi

>

> One reason for this is that the risk of bleeding is 50 to 100 times as

> great as the risk of liver disease to start with, and that it is known

> that ibuprofen can double or triple the risk of bleeding.

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0A

> 960958260

> http://query.nytimes.com/gst/fullpage.html?res=9805E0DE1539F934A15750C0

> A960958260&sec=&spon=&pagewanted=2> &sec=&spon=&pagewanted=2

>

> Want more info? Google for

> http://www.google.com/url?q=http://www.answers.com/ibuprofen&r=67&sa=X&

> oi=dict&ct=D&cd=1&usg=AFQjCNFNjs4uwZ7qZr6m-73PJEObcfBgvw> Ibuprofen &

> http://www.google.com/url?q=http://www.answers.com/liver&r=67&sa=X&oi=d

> ict&ct=D&cd=2&usg=AFQjCNELJo0CbOqt8sN9dZ0JXEsHNC0veA> liver

> http://www.google.com/url?q=http://www.answers.com/disease&r=67&sa=X&oi

> =dict&ct=D&cd=3&usg=AFQjCNHWIB8heOFpEBXN5X_M8X7f652SWg> disease -

> 554,000

>

> HTH Barb in Texas - Together in the Fight - Whatever it Takes!

> Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

>

[Guest guest]

I agree with Don. There are differences of opinion and doctors give different advice (now who in this group doesn't know that!). But, as both mom and ancient RN, old nurse practitioner, medicine is both art and science... But back to the discussion. was given same advice as Lori. 's GI prefers Tylenol, low dose over ibuprofen/Advil/Aleve in large part due to NSAID effects on GI and Ulcerative Colitis. Lori is 100% correct - high doses are problematic and if severe liver disease, both Tylenol and ibuprofen are problematic. Ibuprofen is also a problem with kidney dysfunction. So for folks with pain and liver and/or kidney problems, it may be far more beneficial to use narcotics, carefully of course, for pain relief. Lastly, with any narcotic, pay attention to keeping stool soft and moving through the system! Although for someone with diarrhea, the side effect of narcotic in slowing bowel transit could also be a good thing.

Joanne H

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

My son's GI recommended tylenol over motrin/advil also- actually bothhis GIs and all of the hepatologists as well (we have been sent toseveral centers around the country for opinions). .. I know tylenol in HIGH doses can be harmful to the liver but so can advil/motrin.Lorilucky mom blessed with triplets

..

[Guest guest]

I agree with Don. There are differences of opinion and doctors give different advice (now who in this group doesn't know that!). But, as both mom and ancient RN, old nurse practitioner, medicine is both art and science... But back to the discussion. was given same advice as Lori. 's GI prefers Tylenol, low dose over ibuprofen/Advil/Aleve in large part due to NSAID effects on GI and Ulcerative Colitis. Lori is 100% correct - high doses are problematic and if severe liver disease, both Tylenol and ibuprofen are problematic. Ibuprofen is also a problem with kidney dysfunction. So for folks with pain and liver and/or kidney problems, it may be far more beneficial to use narcotics, carefully of course, for pain relief. Lastly, with any narcotic, pay attention to keeping stool soft and moving through the system! Although for someone with diarrhea, the side effect of narcotic in slowing bowel transit could also be a good thing.

Joanne H

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

My son's GI recommended tylenol over motrin/advil also- actually bothhis GIs and all of the hepatologists as well (we have been sent toseveral centers around the country for opinions). .. I know tylenol in HIGH doses can be harmful to the liver but so can advil/motrin.Lorilucky mom blessed with triplets

..

[Guest guest]

I am so sorry for your daughter's diagnosis. I can't help but notice how challenging you find your doctor. You should truly consider reaching out and looking for someone you can talk to, ask questions to, TRUST! PSC is too much of a stress case to have to constantly challenge your doctor. I would strongly urge you to find a doctor for your daughter that is best for her and her situation. Most patients on this list see a GI or a Hep doc. My brother has a champion of a GI doctor. Now transplant docs...they took some warming up to...but once he was transplanted...well that's a completely different story. 's long health battle started for him when he was 16 and broke his leg. Everything for him went down hill. He had massive UC flairs that the doctors couldn't figure out. He

almost died a few times due to extreme blood loss. It wasn't until he moved to Austin, had a flair and ended up in the ER that we found his current GI who FINALLY figured out what was wrong with him, 7 years later. So, yes I do know the frustration of constantly battling your doctor, but I also know the relief of trusting a doctor and that is beyond words. (they had him dx's with Cohrns' Disease, then took it back, then revisited it, then took it back, then his doctor actually took the time to look at the symptoms and viola...UC...unfortuntaly, 2 scopes & three years later, came the PSC dx)There is no ryhme or reason for the disease. Each person is affected differently and at different stages. PSC is not text book liver disease...I think that is why it is so frustrating. My brother had itching long before the jaundice ever set in. Stress also seemed to affect his numbers. One month his numbers were

"normal", the next elevated. This is also what make this group so great, you get a first hand look at the trials, conquers, tribulations, success of each person or care giver living with PSC. One thing we all learn at some point is that we can't let PSC live our lifes, but rather we have to live. I wish you and your daughter all the best. I hope for both peace and patience during this time. Seek a doctor you can trust, talk to, question, and are comfortable with. It will make this trek easier to climb. in TexasSubject: Re: "House" - slight topic changeTo: Date: Wednesday, April 1, 2009, 1:11

AM

My request was specific to the comment about the "the phenomenon that we all know -- that LFTs go higher initially, but

they drop to more "normal" levels when the damage has been done." That is not something I found in my research, and I want to know more about it.

I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.There was a fairly dramatic change that she noticed mid-November, at which point she literally thought she was going crazy because her mind stopped feeling/thinking right. The fatigue has gradually and steadily increased since then to the point where it is constant and relatively (for

her) extreme. She has gone from being the valedictorian of her high school class who transitioned successfully to being a college freshman - far more successfully than I would have predicted - to a student who was unable to finish two papers in December because she could no longer concentrate and who is now at risk of failing every single class this semester because she cannot stay awake long enough to do her work. When she can stay awake she can't concentrate (she has make-up work to do in every class but one, some of it from the first couple of weeks of the semester, and she will drop one class in the next day or two because she has missed about half of the work in that class and just can't keep up). At the end of first semester, when she couldn't finish her papers,she managed to switch to doing work it was easier to concentrate on (Calculus she easily finished with an A, for example, and she had no problems completing the work in

every other class). Now, when the fatigue hits she is pretty much out of it for everything (including socializing) . February 10 was the last comfortable phone conversation I have had with her; the last before that was Decembe 17. I know the dates because those have been the only two conversations I have had with her since the first week in December when she has sounded at all interested in life - rather than just dead. The realization that her liver was involved (mid January) was actually a relief to her because it explained so many of the symptoms (some major, some minor, mostly intermittent) she has had over the years, and some that are new (she had headaches for the first time ever in December). Initially, we hoped it was drug toxicity that might be corrected by switching medication. Although I was pretty sure it was PSC by the end of January, I didn't share my suspicions with her to avoid adding an emotional

drain to the physical drain she was already experiencing. The worst of the symptoms are now relatively constant (itching and fatigue). The specific diagnosis (which she learned 12 days ago) while certainly emotionally devastating is too recent to have been the cause of her difficulties over the past three months. The first dramatic changes in her thinking (November - when she first started feeling something was wrong/December - when I could see something was wrong and it first seriously impacted her academic performance) came before we had any clue that there was something physical wrong, or that the liver was involved.So when Penny commented about the LFT numbers going higher then falling back to normal after the damage is done- and I see how dramatically different she has been since December - I want to find more information about this phenomenon - particularly since every reference I have found on itching and

thinking/reasoning difficulties associated with liver disorders describe these syptoms as being relatively late symptoms, and she has been itching at least for 4 years, and her ability to concentrate and do language based analysis dramatically declined around December.No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important)., Mom to 18 yo daughter UC 6/95, PSC 3/09..From: Logan Berg <cswb (AT) safelink (DOT) net>TIt seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking

problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC

[Guest guest]

I am so sorry for your daughter's diagnosis. I can't help but notice how challenging you find your doctor. You should truly consider reaching out and looking for someone you can talk to, ask questions to, TRUST! PSC is too much of a stress case to have to constantly challenge your doctor. I would strongly urge you to find a doctor for your daughter that is best for her and her situation. Most patients on this list see a GI or a Hep doc. My brother has a champion of a GI doctor. Now transplant docs...they took some warming up to...but once he was transplanted...well that's a completely different story. 's long health battle started for him when he was 16 and broke his leg. Everything for him went down hill. He had massive UC flairs that the doctors couldn't figure out. He

almost died a few times due to extreme blood loss. It wasn't until he moved to Austin, had a flair and ended up in the ER that we found his current GI who FINALLY figured out what was wrong with him, 7 years later. So, yes I do know the frustration of constantly battling your doctor, but I also know the relief of trusting a doctor and that is beyond words. (they had him dx's with Cohrns' Disease, then took it back, then revisited it, then took it back, then his doctor actually took the time to look at the symptoms and viola...UC...unfortuntaly, 2 scopes & three years later, came the PSC dx)There is no ryhme or reason for the disease. Each person is affected differently and at different stages. PSC is not text book liver disease...I think that is why it is so frustrating. My brother had itching long before the jaundice ever set in. Stress also seemed to affect his numbers. One month his numbers were

"normal", the next elevated. This is also what make this group so great, you get a first hand look at the trials, conquers, tribulations, success of each person or care giver living with PSC. One thing we all learn at some point is that we can't let PSC live our lifes, but rather we have to live. I wish you and your daughter all the best. I hope for both peace and patience during this time. Seek a doctor you can trust, talk to, question, and are comfortable with. It will make this trek easier to climb. in TexasSubject: Re: "House" - slight topic changeTo: Date: Wednesday, April 1, 2009, 1:11

AM

My request was specific to the comment about the "the phenomenon that we all know -- that LFTs go higher initially, but

they drop to more "normal" levels when the damage has been done." That is not something I found in my research, and I want to know more about it.

I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.There was a fairly dramatic change that she noticed mid-November, at which point she literally thought she was going crazy because her mind stopped feeling/thinking right. The fatigue has gradually and steadily increased since then to the point where it is constant and relatively (for

her) extreme. She has gone from being the valedictorian of her high school class who transitioned successfully to being a college freshman - far more successfully than I would have predicted - to a student who was unable to finish two papers in December because she could no longer concentrate and who is now at risk of failing every single class this semester because she cannot stay awake long enough to do her work. When she can stay awake she can't concentrate (she has make-up work to do in every class but one, some of it from the first couple of weeks of the semester, and she will drop one class in the next day or two because she has missed about half of the work in that class and just can't keep up). At the end of first semester, when she couldn't finish her papers,she managed to switch to doing work it was easier to concentrate on (Calculus she easily finished with an A, for example, and she had no problems completing the work in

every other class). Now, when the fatigue hits she is pretty much out of it for everything (including socializing) . February 10 was the last comfortable phone conversation I have had with her; the last before that was Decembe 17. I know the dates because those have been the only two conversations I have had with her since the first week in December when she has sounded at all interested in life - rather than just dead. The realization that her liver was involved (mid January) was actually a relief to her because it explained so many of the symptoms (some major, some minor, mostly intermittent) she has had over the years, and some that are new (she had headaches for the first time ever in December). Initially, we hoped it was drug toxicity that might be corrected by switching medication. Although I was pretty sure it was PSC by the end of January, I didn't share my suspicions with her to avoid adding an emotional

drain to the physical drain she was already experiencing. The worst of the symptoms are now relatively constant (itching and fatigue). The specific diagnosis (which she learned 12 days ago) while certainly emotionally devastating is too recent to have been the cause of her difficulties over the past three months. The first dramatic changes in her thinking (November - when she first started feeling something was wrong/December - when I could see something was wrong and it first seriously impacted her academic performance) came before we had any clue that there was something physical wrong, or that the liver was involved.So when Penny commented about the LFT numbers going higher then falling back to normal after the damage is done- and I see how dramatically different she has been since December - I want to find more information about this phenomenon - particularly since every reference I have found on itching and

thinking/reasoning difficulties associated with liver disorders describe these syptoms as being relatively late symptoms, and she has been itching at least for 4 years, and her ability to concentrate and do language based analysis dramatically declined around December.No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important)., Mom to 18 yo daughter UC 6/95, PSC 3/09..From: Logan Berg <cswb (AT) safelink (DOT) net>TIt seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking

problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC

[Guest guest]

Thank you - the post last night was a lot of frustration at the suggestion (after we finally got a diagnosis that explains her symptoms) that I am blaming too much on her liver. I know that part of my reaction is still backlash at being forced to play doctor, rather than being allowed to be just mom when my daughter really needed my full attention, so I tried to soften my expression of that frustration by sharing some of the background as to why I am reacting so negatively to that suggestion.The frustration is with multiple doctors, over a number of years, who have not taken me seriously (particularly since I have always ended up being right). This one is very good at what he is good at, but this disease does stretch his limits and we are actively working on getting a

second opinion (actually a Hep/transplant doc - the one who diagnosed my SIL's hep C - she loves him, so we figure it's a good place to start)., Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 1, 2009 9:29:33 AMSubject: Re:

I am so sorry for your daughter's diagnosis. I can't help but notice how challenging you find your doctor. You should truly consider reaching out and looking for someone you can talk to, ask questions to, TRUST! PSC is too much of a stress case to have to constantly challenge your doctor. I would strongly urge you to find a doctor for your daughter that is best for her and her situation. Most patients on this list see a GI or a Hep doc. My brother has a champion of a GI doctor. Now transplant docs...they took some warming up to...but once he was transplanted. ..well that's a completely different

story. 's long health battle started for him when he was 16 and broke his leg. Everything for him went down hill. He had massive UC flairs that the doctors couldn't figure out. He

almost died a few times due to extreme blood loss. It wasn't until he moved to Austin, had a flair and ended up in the ER that we found his current GI who FINALLY figured out what was wrong with him, 7 years later. So, yes I do know the frustration of constantly battling your doctor, but I also know the relief of trusting a doctor and that is beyond words. (they had him dx's with Cohrns' Disease, then took it back, then revisited it, then took it back, then his doctor actually took the time to look at the symptoms and viola...UC.. .unfortuntaly, 2 scopes & three years later, came the PSC dx)There is no ryhme or reason for the disease. Each person is affected differently and at different stages. PSC is not text book liver disease...I think that is why it is so frustrating. My brother had itching long before the jaundice ever set in. Stress also seemed to affect his numbers. One month his numbers were

"normal", the next elevated. This is also what make this group so great, you get a first hand look at the trials, conquers, tribulations, success of each person or care giver living with PSC. One thing we all learn at some point is that we can't let PSC live our lifes, but rather we have to live. I wish you and your daughter all the best. I hope for both peace and patience during this time. Seek a doctor you can trust, talk to, question, and are comfortable with. It will make this trek easier to climb. in TexasFrom: Reeves <nlreeves (AT) yahoo (DOT) com>Subject: Re: "House" - slight topic changeTo: @ yahoogroups. comDate: Wednesday, April 1, 2009, 1:11

AM

My request was specific to the comment about the "the phenomenon that we all know -- that LFTs go higher initially, but

they drop to more "normal" levels when the damage has been done." That is not something I found in my research, and I want to know more about it.

I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.There was a fairly dramatic change that she noticed mid-November, at which point she literally thought she was going crazy because her mind stopped feeling/thinking right. The fatigue has gradually and steadily increased since then to the point where it is constant and relatively (for

her) extreme. She has gone from being the valedictorian of her high school class who transitioned successfully to being a college freshman - far more successfully than I would have predicted - to a student who was unable to finish two papers in December because she could no longer concentrate and who is now at risk of failing every single class this semester because she cannot stay awake long enough to do her work. When she can stay awake she can't concentrate (she has make-up work to do in every class but one, some of it from the first couple of weeks of the semester, and she will drop one class in the next day or two because she has missed about half of the work in that class and just can't keep up). At the end of first semester, when she couldn't finish her papers,she managed to switch to doing work it was easier to concentrate on (Calculus she easily finished with an A, for example, and she had no problems completing the work in

every other class). Now, when the fatigue hits she is pretty much out of it for everything (including socializing) . February 10 was the last comfortable phone conversation I have had with her; the last before that was Decembe 17. I know the dates because those have been the only two conversations I have had with her since the first week in December when she has sounded at all interested in life - rather than just dead. The realization that her liver was involved (mid January) was actually a relief to her because it explained so many of the symptoms (some major, some minor, mostly intermittent) she has had over the years, and some that are new (she had headaches for the first time ever in December). Initially, we hoped it was drug toxicity that might be corrected by switching medication. Although I was pretty sure it was PSC by the end of January, I didn't share my suspicions with her to avoid adding an emotional

drain to the physical drain she was already experiencing. The worst of the symptoms are now relatively constant (itching and fatigue). The specific diagnosis (which she learned 12 days ago) while certainly emotionally devastating is too recent to have been the cause of her difficulties over the past three months. The first dramatic changes in her thinking (November - when she first started feeling something was wrong/December - when I could see something was wrong and it first seriously impacted her academic performance) came before we had any clue that there was something physical wrong, or that the liver was involved.So when Penny commented about the LFT numbers going higher then falling back to normal after the damage is done- and I see how dramatically different she has been since December - I want to find more information about this phenomenon - particularly since every reference I have found on itching and

thinking/reasoning difficulties associated with liver disorders describe these syptoms as being relatively late symptoms, and she has been itching at least for 4 years, and her ability to concentrate and do language based analysis dramatically declined around December.No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important)., Mom to 18 yo daughter UC 6/95, PSC 3/09..From: Logan Berg <cswb (AT) safelink (DOT) net>TIt seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking

problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC

[Guest guest]

Thank you - the post last night was a lot of frustration at the suggestion (after we finally got a diagnosis that explains her symptoms) that I am blaming too much on her liver. I know that part of my reaction is still backlash at being forced to play doctor, rather than being allowed to be just mom when my daughter really needed my full attention, so I tried to soften my expression of that frustration by sharing some of the background as to why I am reacting so negatively to that suggestion.The frustration is with multiple doctors, over a number of years, who have not taken me seriously (particularly since I have always ended up being right). This one is very good at what he is good at, but this disease does stretch his limits and we are actively working on getting a

second opinion (actually a Hep/transplant doc - the one who diagnosed my SIL's hep C - she loves him, so we figure it's a good place to start)., Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 1, 2009 9:29:33 AMSubject: Re:

I am so sorry for your daughter's diagnosis. I can't help but notice how challenging you find your doctor. You should truly consider reaching out and looking for someone you can talk to, ask questions to, TRUST! PSC is too much of a stress case to have to constantly challenge your doctor. I would strongly urge you to find a doctor for your daughter that is best for her and her situation. Most patients on this list see a GI or a Hep doc. My brother has a champion of a GI doctor. Now transplant docs...they took some warming up to...but once he was transplanted. ..well that's a completely different

story. 's long health battle started for him when he was 16 and broke his leg. Everything for him went down hill. He had massive UC flairs that the doctors couldn't figure out. He

almost died a few times due to extreme blood loss. It wasn't until he moved to Austin, had a flair and ended up in the ER that we found his current GI who FINALLY figured out what was wrong with him, 7 years later. So, yes I do know the frustration of constantly battling your doctor, but I also know the relief of trusting a doctor and that is beyond words. (they had him dx's with Cohrns' Disease, then took it back, then revisited it, then took it back, then his doctor actually took the time to look at the symptoms and viola...UC.. .unfortuntaly, 2 scopes & three years later, came the PSC dx)There is no ryhme or reason for the disease. Each person is affected differently and at different stages. PSC is not text book liver disease...I think that is why it is so frustrating. My brother had itching long before the jaundice ever set in. Stress also seemed to affect his numbers. One month his numbers were

"normal", the next elevated. This is also what make this group so great, you get a first hand look at the trials, conquers, tribulations, success of each person or care giver living with PSC. One thing we all learn at some point is that we can't let PSC live our lifes, but rather we have to live. I wish you and your daughter all the best. I hope for both peace and patience during this time. Seek a doctor you can trust, talk to, question, and are comfortable with. It will make this trek easier to climb. in TexasFrom: Reeves <nlreeves (AT) yahoo (DOT) com>Subject: Re: "House" - slight topic changeTo: @ yahoogroups. comDate: Wednesday, April 1, 2009, 1:11

AM

My request was specific to the comment about the "the phenomenon that we all know -- that LFTs go higher initially, but

they drop to more "normal" levels when the damage has been done." That is not something I found in my research, and I want to know more about it.

I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.There was a fairly dramatic change that she noticed mid-November, at which point she literally thought she was going crazy because her mind stopped feeling/thinking right. The fatigue has gradually and steadily increased since then to the point where it is constant and relatively (for

her) extreme. She has gone from being the valedictorian of her high school class who transitioned successfully to being a college freshman - far more successfully than I would have predicted - to a student who was unable to finish two papers in December because she could no longer concentrate and who is now at risk of failing every single class this semester because she cannot stay awake long enough to do her work. When she can stay awake she can't concentrate (she has make-up work to do in every class but one, some of it from the first couple of weeks of the semester, and she will drop one class in the next day or two because she has missed about half of the work in that class and just can't keep up). At the end of first semester, when she couldn't finish her papers,she managed to switch to doing work it was easier to concentrate on (Calculus she easily finished with an A, for example, and she had no problems completing the work in

every other class). Now, when the fatigue hits she is pretty much out of it for everything (including socializing) . February 10 was the last comfortable phone conversation I have had with her; the last before that was Decembe 17. I know the dates because those have been the only two conversations I have had with her since the first week in December when she has sounded at all interested in life - rather than just dead. The realization that her liver was involved (mid January) was actually a relief to her because it explained so many of the symptoms (some major, some minor, mostly intermittent) she has had over the years, and some that are new (she had headaches for the first time ever in December). Initially, we hoped it was drug toxicity that might be corrected by switching medication. Although I was pretty sure it was PSC by the end of January, I didn't share my suspicions with her to avoid adding an emotional

drain to the physical drain she was already experiencing. The worst of the symptoms are now relatively constant (itching and fatigue). The specific diagnosis (which she learned 12 days ago) while certainly emotionally devastating is too recent to have been the cause of her difficulties over the past three months. The first dramatic changes in her thinking (November - when she first started feeling something was wrong/December - when I could see something was wrong and it first seriously impacted her academic performance) came before we had any clue that there was something physical wrong, or that the liver was involved.So when Penny commented about the LFT numbers going higher then falling back to normal after the damage is done- and I see how dramatically different she has been since December - I want to find more information about this phenomenon - particularly since every reference I have found on itching and

thinking/reasoning difficulties associated with liver disorders describe these syptoms as being relatively late symptoms, and she has been itching at least for 4 years, and her ability to concentrate and do language based analysis dramatically declined around December.No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important)., Mom to 18 yo daughter UC 6/95, PSC 3/09..From: Logan Berg <cswb (AT) safelink (DOT) net>TIt seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking

problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC