Re: Bacterial cholangitis attack? (TYLENOL)

[Guest guest]

My hep says no more than 1000 mg of Tylenol daily for an adult. If you

do a search of the messages I know we had this discussion several

months ago.

[Guest guest]

Ok I have a couple comments....first of all, I am SO sorry your son is going

through all of this.

It is hard enough watching my husband. I can't imagine watching my child go

through such

an illness.

Anyway, I cannot believe a doctor told you there is no pain with PSC. had

no symptoms

for years other than what we found out last year was gallstones which, of course

caused

some nasty attacks that landed him in the ER a few times. However, there are

many times

that he will say his liver hurts. He's had blockages as well as infections in

his bile ducts and

let me tell you, it IS painful! I don't have PSC but I have had gallstones so I

know what those

attacks feel like and trust me, you want someone just to bash you over the head

with a

sledge hammer. It is the worst, most intense pain I have ever felt and I would

imagine a

cholangitis attack would be similar.

Also, last week when spiked a fever after his flu & Hep B shots, I talked

to the

transplant coordinator on call and she told me to give him 2 Tylenol. She said

not to give him

more than 2000 mg in a 24 hour period but 2 to reduce his fever would be fine.

If you have

doubts, go with your gut and talk to your son's doctor.

[Guest guest]

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]

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]

You are welcome, This disease is very frustating. It took me

almost 10 years to get diagnosed. Several Doctors told me that my

pain was somatic. I think I aasked him if I could show him what my

somatic pain felt like and fired him instead of doing what I wanted

to do. Autoimmune disease are horrible!!

>

>

> 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 "

>

om> To

> Sent by: psc-

support

> psc-

support@yahoo cc

>

groups.com

>

Subject

> Re:

Bacterial

> 10/30/2008 06:39 cholangitis attack?

(TYLENOL)

>

AM

>

>

> Please respond

to

> psc-

support@yahoo

>

groups.com

>

>

>

>

>

>

>

>

>

>

>

>

> 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]

You are welcome, This disease is very frustating. It took me

almost 10 years to get diagnosed. Several Doctors told me that my

pain was somatic. I think I aasked him if I could show him what my

somatic pain felt like and fired him instead of doing what I wanted

to do. Autoimmune disease are horrible!!

>

>

> 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 "

>

om> To

> Sent by: psc-

support

> psc-

support@yahoo cc

>

groups.com

>

Subject

> Re:

Bacterial

> 10/30/2008 06:39 cholangitis attack?

(TYLENOL)

>

AM

>

>

> Please respond

to

> psc-

support@yahoo

>

groups.com

>

>

>

>

>

>

>

>

>

>

>

>

> 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

>