Re: HELP!!

[Guest guest]

Beth Hunt wrote:

> Ok, we went to see the GI today for a follow up after the colonoscopy...

> they want to put on Azathioprine ...

>

> My head is spinning...Are any of you on this drug?? Should I allow them

> to put her on this drug?? I am so confused!

Beth,

I know your head really is spinning, but it's OK, really. Take some

deep breaths and hang on, girl. You've got a whole wonderful group here

to give you support and encouragement.

There are a goodly number of our group who take this pill. I've been on

Azathioprine for 11 years now (100 mg. daily) and it hasn't bothered my

liver in the least. Actually, I can't attribute ANY side effects to

this drug (and I'm an old hand at being hit by side effects! The

weirder, the better!) This drug has worked wonders in keeping my

Crohn's under control and I really wouldn't give it up without a fight.

It beats the heck out of prednisone!!!!

Now, this is simply my experience. It doesn't mean it might not bother

, but I think the chances are pretty high that she will tolerate it

well. Azathioprine is one of those drugs that, if it does cause any

damage, the damage is generally easy to reverse by stopping the drug. I

would, therefore, strongly encourage you to let her give it a try.

If you would feel better talking to someone, just e-mail me privately

with your phone number and I'll be happy to

call you. We have unlimited long distance and most days I can sit and

chat on the phone easier than I can type out an e-mail.

Also, I strongly advise you to ask for copies of 's lab work and

keep them in a notebook. That way, you will KNOW what her bilirubin is

and not have to settle for " Oh, it's not a problem. " (Yeah ... not a

problem for the drs, but a patient or patient's mother feels a bit more

strongly over what constitutes a reason for worrying!

Personally, I know when my bilirubin is beginning to rise because my

back will start itching mildly even though the numbers are still within

the normal range. If is scratching until she bleeds, the drs.

should do something!!

Now, take a few more deep breaths and read Psalm 46.

Sending you a big hug,

Carolyn B. in SC

[Guest guest]

Dear Beth;

I've uploaded a file into the " Files folder " that deals with lab

testing to try to guide (and avoid adverse effects of) azathioprine

or 6-mercaptopurine therapy in inflammatory bowel disease:

Message#: 82972

File Description: Lichtenstein GR 2004 Use of laboratory testing to

guide 6-mercaptopurine/azathioprine therapy. Gastroenterology 127:

1558-1564.

You might share this with 's doctors, and discuss some of the

recommendations given in this paper. One recommendation would seem

to be to have first tested to see whether her thiopurine

methyltransferase (TPMT) enzyme level is normal. It appears that in

the 1 in 300 patients who have abnormally low TPMT activity, there

is a higher risk of adverse effects. If 's TPMT is very low,

then this therapy should be avoided. If 's TPMT level is

normal, there may still be risk of adverse effects, but the risk may

be lessened. Second, you might want to discuss whether the doctors

would plan to measure 's white blood count (WBC) during the

therapy, and how frequently. Third, discuss what dose they might

start at, and what target dose they would want to achieve. Fourth,

have them explain to you all of the known side-effects of the

medication, and what signs and symptoms to look for ... and have

them put this all in writing so you don't have to try to remember it

all.

If the doctors are planning on starting on azathioprine or 6-

mercaptopurine, they may be reluctant to also start her on a

medication to control itching at the same time? There are

medications that control itching, and one drug that was very

effective for our son (who began itching WITHOUT any increase in

bilirubin!) has been rifampin. However, there is also a small risk

of heptotoxicity with this drug, so they recommend monitoring ALT

and AST after it is introduced.

I'm glad that will be seeing a rheumatologist concerning her

back pain.

Let us know if you have any questions.

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

[Guest guest]

Corrie,

Thank you for coming out of lurking for me!!! It does make me feel much

better to know that this is a “normal” treatment.

So, ok, the immuno- suppression thing scares me, this child gets sick

easy enough...will this make it worse?

Beth Hunt

Mom to : seven

years old PSC (8/04) UC (2/06)

" But without faith it is impossible

to please him: for he that cometh to God must believe that he is, and that he

is a rewarder of them that diligently seek him. " Hebrews 11:6

[Guest guest]

I work in a school and haven't gotten cold very often since starting

6mp. BUT, my entire family recently contracted a stomach bug and I was

the only one who had to go to the doctors and was admitted. My brother

even went to work the next day. I was in there for a good 5 days.

Hope this helps,

Corrie

UC 1995

PSC 2000

Pancreatitis from ERCP 2004 (surgery for it 2004)

> So, ok, the immuno- suppression thing scares me, this child gets sick

> easy enough...will this make it worse?

[Guest guest]

Beth

Are you on the east coast

On the east coast yes...but way more south...LOL

I am actually closer to the Gulf of Mexico ...hee hee... we live in Florida.

Beth Hunt

Mom to : seven

years old PSC (8/04) UC (2/06)

" But without faith it is impossible

to please him: for he that cometh to God must believe that he is, and that he

is a rewarder of them that diligently seek him. " Hebrews 11:6

[Guest guest]

I will be glad to send you some snow. We got over a foot last night. MartiBeth Hunt wrote: Beth Are you on the east coast On the east coast yes...but way more south...LOL I am actually closer to the Gulf of Mexico ...hee hee... we live in Florida. Beth Hunt Mom to : seven years old PSC (8/04) UC (2/06) "But without faith it is impossible to please him: for he that cometh to God must believe that he is, and that he is a rewarder of them that diligently seek him." Hebrews 11:6

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Dear Terri,You should talk about this with your doctor. My son had UC with his PSC and this caused the blood in his stools. It became a big problem because he waited too long to tell us how bad it was.If this were to be the case with you then the earlier you catch it the better.It could also be as you said, but your doctor can help you figure it out.Good luck,Lee Hi all hope you all doing really well. I need your opinion, for the last 2 months I have had a little blood in my stools, but have always said maybe little bit of piles but then recently just been getting worse and tonight was pretty bad, could this have to do with PSC, and should I get hold of my Dr?   Thanks4listening to this lovely(ya right) email. Any advice would be appreciated. Thanks Terri(17) South Africa Diagnosed psc 2002Send instant messages to your online friends http://uk.messenger.yahoo.com

[Guest guest]

Terri,

I am not sure if it is PSc (don't know if you have UC also) related

but blood in stools that long and getting worse should be checked.

And you are only 17 and so don't take any risks. Better have it

checked than regret later. If it is just piles, over the counter

medicines should have helped with any inflammation and thus bleeding

by now.

Take care of yourself.

Rita

[Guest guest]

Dear Terri;

Because PSC is often associated with inflammatory bowel disease (IBD),

it would be good to have your doctor check to see if the blood in your

stool might be from this cause. It could of course be from piles or

hemorroids, but it would be best to have this looked at by your doctor

to be on the safe side. Often, medicines can be prescribed to bring the

IBD into remission. My son was diagnosed with a type of inflammatory

bowel disease called ulcerative colitis, found about 1 month after his

PSC diagnosis. A medicine called Asacol has pretty much kept this in

remission for him for the past 3 years.

Best wishes, and take care;

Dave

(father of (20); PSC 07/03; UC 08/03)

[Guest guest]

Terri

Increased bleeds always yes call the doc.

Bestjd, 45UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3Southern, ILkrmpotich@...

help!!

Hi all

hope you all doing really well.

I need your opinion, for the last 2 months I have had a little blood in my stools, but have always said maybe little bit of piles but then recently just been getting worse and tonight was pretty bad, could this have to do with PSC, and should I get hold of my Dr?

Thanks4listening to this lovely(ya right) email. Any advice would be appreciated.

Thanks

Terri(17)

South Africa

Diagnosed psc 2002

Send instant messages to your online friends http://uk.messenger.yahoo.com

[Guest guest]

Hi Terri,

Certainly time to call the doc. The majority of PSC patients have

either ulcerative colitis or Crohn's disease.

I got UC at 16. After a few weeks of sulfasalazine it got better and

hasn't bothered me for 26 years, though I still have it. You will

probably need a colonoscopy to diagnose it. A nurse told me to avoid

milk products because of the UC. You might try that for a while and

see if it helps.

Good luck,

Martha

42, UC, 1979, PSC 1992

>

> Hi all

> hope you all doing really well.

> I need your opinion, for the last 2 months I have had a little

blood in my stools, but have always said maybe little bit of piles but

then recently just been getting worse and tonight was pretty bad,

could this have to do with PSC, and should I get hold of my Dr?