Re: mercaptopur for liver disease?

August 6, 2006

Hi Cindi,

ne here in Broomfield, CO,

When I was first diagnosed with AIH I was put on Pred and 6MP (the part if

imuran we need). 6 Mercaptopurinez and the Purinethol. maybe your mother

doesn't need Purinethol.

I wish I could have used it. Pred is a really powerful drug with loads of

side effects. This is what I had for 60mg-40mg of pred for 2.5 years.

Weighgain, intense hunger, depression, excessive hair growth in face,

blindness for

a month, Diabetes, etc.

My belief is the less meds you can get to work the better.

this is a partial list of my effects for `Mercaptopurinez

good luck,

ne

darkening of skin

diarrhea

headache

loss of appetite

skin rash and itching

weakness

Always Notify Doctor: More common

unusual tiredness or weakness

yellow eyes or skin Less Common

joint pain

loss of appetite

nausea and vomiting

swelling of feet or lower legs Rare

Sores in mouth and on lips

Notify Doctor Immediately: Less common

August 6, 2006

Hi Cyndi,

I am Loes, from Kingsville Canada.

I used immuran instead of purinethol (mercaptopur is the active substance in

this medicine) before and I had a lot of bad side effects. With the immuran

I had really bad jointaches.I have been using prednison and purinethol for

more than 3 years now and this works pretty well for me. I am now on 7,5 mg

prednison and 25mg purinethol (mercaptopur). First they prescribed 50 mg

purinethol but than I experienced skinrash and hairloss, so they just

lowered the doses a bit and this is fine.

Everything is different and things take a little time to settle in, and

sometimes ‘normal’ doses can be cut back a little.

Try to take it one day at a time.

With love

Loes

_____

From: [mailto: ]

On Behalf Of Cyndi Elliott

Sent: August 6, 2006 12:15 PM

Subject: [ ] mercaptopur for liver disease?

Hi it's me again, Cyndi in Chicago, with a question regarding my Mom's care.

They are starting her on Mercaptopur for her AIH, and it seems scary. Anyone

else taken this for liver disease? She is on prednisone only now. And her

counts are good. Imuran made her sick/vomit. I guess if she doesn't have a

bad reaction to the Mercaptopur, they would take her off prednisone.

I just did a quick search and see it's been prescribed for cancer, Crohn's,

but isn't it unusual for AIH?

I am concerned.

Feel free to email me on or off-list with any insights. It would be so

appreciated.

Cyndi

August 6, 2006

I take 6MP. Imuran made me so ill and then my GI tried Cellcept, but that also

made me ill, so I am on the 6MP. It is OK for the most part. I take 100 mg

Thank goodness that I have not been on prednisone after the first 19

months...that was back in 2002 that I was able to get off of it! I have told my

GI that I NEVER plan on taking it again unless it totally is the ONLY way that I

can live. I detest that medication! HOWEVER, in all fairness, the first two

weeks, the doctor who had perscribed 60 mg of prednisone FAILED to instruct me

to take it in the AM...I took it at night and literally did not sleep for 2

weeks. I called paniced because I was so tired and could not sleep, but they

called me a non compliant patient because I told the receptionist that I planned

to stop taking it because I was going crazy. The doctor " fired me and I had to

find my current GI. It probably was the best thing, because the first GI had

only seen one or two other people with AIH and had never seen a patient with

both AIH and celiac disease...so in the long run, it was better for me!

Debby

[ ] mercaptopur for liver disease?

Hi it's me again, Cyndi in Chicago, with a question regarding my Mom's care.

They are starting her on Mercaptopur for her AIH, and it seems scary. Anyone

else taken this for liver disease? She is on prednisone only now. And her counts

are good. Imuran made her sick/vomit. I guess if she doesn't have a bad reaction

to the Mercaptopur, they would take her off prednisone.

I just did a quick search and see it's been prescribed for cancer, Crohn's,

but isn't it unusual for AIH?

I am concerned.

Feel free to email me on or off-list with any insights. It would be so

appreciated.

Cyndi

August 6, 2006

Cyndi, I looked up this drug (as I'm sure you've done) so I'd say let her try

them and just watch for the side effects and see how it works. it seems to be

working pretty well

for Loes. I tend to go with what the docs prescribe and hope that they know

from experience..........

Loes van der Weiden <loesvanderweiden@...> wrote:

Hi Cyndi,

I am Loes, from Kingsville Canada.

I used immuran instead of purinethol (mercaptopur is the active substance in

this medicine) before and I had a lot of bad side effects. With the immuran

I had really bad jointaches.I have been using prednison and purinethol for

more than 3 years now and this works pretty well for me. I am now on 7,5 mg

prednison and 25mg purinethol (mercaptopur). First they prescribed 50 mg

purinethol but than I experienced skinrash and hairloss, so they just

lowered the doses a bit and this is fine.

Everything is different and things take a little time to settle in, and

sometimes ‘normal’ doses can be cut back a little.

Try to take it one day at a time.

With love

Loes

_____

From: [mailto: ]

On Behalf Of Cyndi Elliott

Sent: August 6, 2006 12:15 PM

Subject: [ ] mercaptopur for liver disease?

Hi it's me again, Cyndi in Chicago, with a question regarding my Mom's care.

They are starting her on Mercaptopur for her AIH, and it seems scary. Anyone

else taken this for liver disease? She is on prednisone only now. And her

counts are good. Imuran made her sick/vomit. I guess if she doesn't have a

bad reaction to the Mercaptopur, they would take her off prednisone.

I just did a quick search and see it's been prescribed for cancer, Crohn's,

but isn't it unusual for AIH?

I am concerned.

Feel free to email me on or off-list with any insights. It would be so

appreciated.

Cyndi

August 6, 2006

My son Austin is now 10 years old dx'd in November 05'.He has been on

6-mp(mercaptopurine)since December.He started out on 45 mg pred and 25

mg 6mp daily.Now he is down to 1 1/2 mg pred e/o day and 25 mg 6mp e/o

day. We had to reduce the 6mp because his metabolite of the drug were

in toxic levels. It takes a few months then they can check them with

a blood test and tailor your dose.Thank god his do did anything over

400 is toxic and Austins were over 800 and took 3 months to get under

400.If you check on Promethus labs website which is where they sent

his to you can read more on the testig and the drug ittself. Good luck

to you!! Missy

August 7, 2006

Can you imagine a physician firing his patient because they cannot take a

drug

I have a friend that this drugs makes her totally paranoid and she ends up

in the hospital

they accidentally gave it to her recently and it happened again

I would be glad I was away from this Hitler

sherry

August 7, 2006

Sherry, indeed I wrote the state medical board and he ended up with a warning on

his " record " for 5 years stating that he had " fired " me while I was on the 6MP

(mind you, NOT the prednisone) and that he could have compromised my health by

withdrawing the 6MP without follow up care being in place. The creep....plus,

there is NOTHING on his medical record that can be found on the " public " record.

Those records are totally bogus in my opinion. If a doctor has been

disciplined, that information SHOULD be public. Good grief...my obituary would

have been public should I have died over the immediate withdrawal of the

prednisone!

Anyway, I am much better with this other doctor. She works in a group of GI's

and each doctor has a " pocket " of patients with AIH, but I am the only one with

Celiac too. This doctor goes to many different conferences and is totally up to

date on the information that affects any patient with AIH. All in all, it