Imuran

[Guest guest]

Annette,

Heya! Sounds like your Doc knows what he/she is doing. I would ask, though about what testing he is doing to monitor your metabolites. Not that I am a Doctor, but believe me, I have had enough Doctors cause MAJOR setbacks in my health because they didn't fully understand my disease. I had a Doc in Texas try to put me on Interferon treatments which probably would have killed me. I don't mean to be nosey or question your doc, but it can be a serious, serious problem if your levels aren't monitored when they first start the Imuran. My Doc tested my metabolites every two weeks until I was stabilized. so, once again, I don't mean to question things, but it makes me nervous. Well, I guess I am done being Miss Busy-body!!! LOL Take care! By the way, does anyone else know about the metabolite monitoring? Maybe I am being silly....?

>From: & Annette

>Reply- > >Subject: RE: [ ] Imuran >Date: Thu, 15 Aug 2002 13:01:12 -0700 > >Thanks, Holly. That information does help. My doctor made a note of my >lymphocyte count, which was 36, when he decided to up the Imuran. I have >been getting copies of all my labs since my doctors are 90 miles away and >only receive them by fax. I'm not sure what ALL the numbers mean, but I look >at the most important ones: bili, AST, ALT. My labs have been weekly lately >and will now decrease to monthly. > >Annette > Re: [ ] Hello > > > > > > hi karen... my name is karen from chas ... dx march/ 02... i too had >been > >very sick they thought it was meds then hep a ... then my bili started > >climbing i was hospitalized in 3 dif hospitals... i went for the hep >check > >up today ... if my numbers look good tomorrow i may go down 5 mg pred and > >increase immuran 50 more mg...my pcp is fri.. lately i have been getting > >"tremors" i call them shakes...ive also been diagnosed with cervical > >radialitis and facet dysfunction,as of aug 15 i am no longer able to keep >my > >employee status ... i get upset but i know i have everyone here ... it >has > >been scary because so much is happening to me but i now have a great >group > >of drs who work together and know each other...my biggest mistakethru all >of > >this is my pcp never discussed what he farmed me out for....no my new pcp > >gets all reports and is trying to fix the layers... i know how you feel >but > >this group has been the best thing for me personnaly ...if i can help >please > >let me know....take care ...karen/chas.s.c > >

[Guest guest]

Holly,

If I were worried about people being "nosey" I wouldn't be posting information about myself, would I? As for my docs, I do believe that they are extremely well-informed about this disease. I've been monitored by a team of hepatologists and gastroenterologists from a reputable teaching hospital in San Francisco - California Pacific Medical Center. They're not always as accessible or responsive as I'd like, but I do believe they're knowledgable. I'm not so sure about my PCP here in Modesto, though. Before I was diagnosed with AIH, I went to him with headaches, dizziness and a bad facial rash, and he gave me Allegra. He also ordered blood tests that he never followed up on. This was one month before my liver started failing. I had just come off of a week-long prednisone rx for my asthma, which probably aggravated the AIH.

From looking at my lab results, a metabolic panel is part of my routine blood work (was weekly, now will be monthly). Like I said, I'm not sure what everything means, but I can at least see whether or not the values are within the normal range.

Scary about the doc who tried to put you on Interferon. That's why it's important for us to inform ourselves as much as possible and question until we're satisfied.

Annette

Re: [ ] Hello > > > > > > hi karen... my name is karen from chas ... dx march/ 02... i too had >been > >very sick they thought it was meds then hep a ... then my bili started > >climbing i was hospitalized in 3 dif hospitals... i went for the hep >check > >up today ... if my numbers look good tomorrow i may go down 5 mg pred and > >increase immuran 50 more mg...my pcp is fri.. lately i have been getting > >"tremors" i call them shakes...ive also been diagnosed with cervical > >radialitis and facet dysfunction,as of aug 15 i am no longer able to keep >my > >employee status ... i get upset but i know i have everyone here ... it >has > >been scary because so much is happening to me but i now have a great >group > >of drs who work together and know each other...my biggest mistakethru all >of > >this is my pcp never discussed what he farmed me out for....no my new pcp > >gets all reports and is trying to fix the layers... i know how you feel >but > >this group has been the best thing for me personnaly ...if i can help >please > >let me know....take care ...karen/chas.s.c > >

[Guest guest]

Annette,

Try to question everything with all of your doctors. Make the docs tell you every step of the way. Otherwise the docs will skip by if they can. I have had many docs try not to tell me what is happening. If you don't know the answers. Write your questions down.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

I know, I tell people I have hepatitis and they say, well it's your

fault. They have no medical education at all and think it is only due to

drinking. Well there are so many other ways to get hepatitis.

Now my mother wants me to bring the wine to Thanksgiving! I couldn't

believe it! What was she thinking?

I was never pregnant so that can't be a factor in my developing AIH.

Take care!

[ ] imuran

... imuran doesn't cause cancer. Anyone taking immunosuppressants is

at a greater risk of a cancer developing (certain lymphomas, melenomas)

because their immune system is compromised.

I'm afraid I have to agree with Harper. Drugs don't cause AIH but rather

trigger it. Why the immun system becomes sensitive to its own cells is

still largely unknown.Some think women may be more likely subjects has

something to do with placental cells left behind during or after

pregnancy This may be true for all autoimmune diseases. The gene may be

present for autoimmunity and a trigger is needed to set it off. Drug

induced hepatitis is caused by the toxic nature of the drug and will be

resolve after the drug is removed. (If one develops alcoholic hepatitis

he/she must immediately stop dinking to let the liver have time to

regenerate.

Remember what " -itis " means -- inflammation.-- take away the cause and

the inflammation subsides. However AIH is chronic ---stopping a certain

drug doesn't make it go away.

Love jerry : )

Carole...the risks of developing cancers are too small to be weighed

against the benefits of the medicine. The most common mentioned are

lymphoma and melenoma...melenomas can be avoided by taking care when in

te sun..

[Guest guest]

Trish,

You mentioned your daughter is taking 20 mg pred in the AM and 15 mg pred in

the PM with dinner. Prednisone is almost exclusively taken in the morning as

it can interfere with normal sleep wake cycles. Please check with your Dr.

on the wisdom of splitting the dose in this way. Sorry, I don't know the

answer to your imuran question, I was one of those people who could not

tolerate it. Prednisone is a nasty drug at best, taking it this way may

result in even more problems. Take care

Patty AIH 1980 Tx 1998

[ ] IMURAN

Where can I find some information on this drug?

My daughter is taking Prednisone now @ 20 mg in the am at breakfast

and 15 mg in the pm at dinner. Along with this is she is taking 3.3

mls of Ranitidine with each dose of prednisone(so twice daily).

We saw the 2 Liver Specialists today and I am so happy to report her

levels are still coming down. Not as quickly as we had hoped but

still coming down. Her liver and spleen is not as enlarged eithier as

it was 10 days ago.

The Doctors mentioned maybe next week (we see them again a week from

today) they may start her on IMURAN. If he body is respondin to her

current meds why would they wish to change it only after 2 weeks? I

havent looked into the IMURAN at all and I am not sure how well

children tolerate it? What is the difference between IMURAN and

PREDNISONE?

TY all

Trish

[Guest guest]

Trish re: Imuran..... prednisone is used in fairly high doses at the

beginning of treatment because it can most quickly nring the

inflammation down Prednisone is an anti-inflammatory.

Prednisone as you probably know by now comes with a price tag...nasty

side effects..especially if taken long-time....so as soon as the numbers

become more normal the idea is to try and get off the prednisone... to

do this they replace it with an immunosuppressant to keep the immune

system from pumping out those auto=antibodies that are attacking the

;iver and causing the inflammation...Imuran is an immunosuppressant that

seems to be the best to use in this condition...it is usually given

concurrently with prednisone as the prednisone is slowly being

tapered.(Imuran may take 4 weeks to work optimally) Imuran seems to be

one of the drugs taken post transplant that has the least

sodee-effects....It is well tolerated my most people. Occassionall

someone can't tolerate it and a substitution is found like 6mp or

cellcept.

Don't worry you doc knows whats up.

love jerry

BTW...prednisone is a steroid (a corticosteroid) as such it boosts the

adrenal gland function. The adrenals produce such enzymes as cortisone

whose job it is to control inflammation

[Guest guest]

Kels was taking the Prednisone all in the morning with breakfast but

on the 7th day of the meds she began vomitting 30 minutes after

taking it, it got to the point where she was vomitting bits of blood

as well and was become too scared to take the meds, so the specialist

suggested we split the dose to breakfast and dinner(we eat around

4:30)....today was the first day of the med being split, so we will

see how she does tonight. The doctor did mention that splitting it

may interfere with her sleep...but even now she is up at 7:30 am,

back in bed from 1-3 pm, then back in bed at 8 pm...

TY for ur concern,

Trish and Family

> Trish,

> You mentioned your daughter is taking 20 mg pred in the AM and 15

mg pred in

> the PM with dinner. Prednisone is almost exclusively taken in the

morning as

> it can interfere with normal sleep wake cycles. Please check with

your Dr.

> on the wisdom of splitting the dose in this way. Sorry, I don't

know the

> answer to your imuran question, I was one of those people who could

not

> tolerate it. Prednisone is a nasty drug at best, taking it this way

may

> result in even more problems. Take care

> Patty AIH 1980 Tx 1998

>

> [ ] IMURAN

>

>

> Where can I find some information on this drug?

> My daughter is taking Prednisone now @ 20 mg in the am at breakfast

> and 15 mg in the pm at dinner. Along with this is she is taking 3.3

> mls of Ranitidine with each dose of prednisone(so twice daily).

>

> We saw the 2 Liver Specialists today and I am so happy to report

her

> levels are still coming down. Not as quickly as we had hoped but

> still coming down. Her liver and spleen is not as enlarged eithier

as

> it was 10 days ago.

>

> The Doctors mentioned maybe next week (we see them again a week

from

> today) they may start her on IMURAN. If he body is respondin to her

> current meds why would they wish to change it only after 2 weeks? I

> havent looked into the IMURAN at all and I am not sure how well

> children tolerate it? What is the difference between IMURAN and

> PREDNISONE?

>

> TY all

> Trish

>

>

>

[Guest guest]

TY Jerry...

I just didnt understand why they would change her meds so

quickly...makes sense now since she is responding to the Prednisone.

I will sleep better tonight!

TY again

Trish

> Trish re: Imuran..... prednisone is used in fairly high doses at the

> beginning of treatment because it can most quickly nring the

> inflammation down Prednisone is an anti-inflammatory.

> Prednisone as you probably know by now comes with a price

tag...nasty

> side effects..especially if taken long-time....so as soon as the

numbers

> become more normal the idea is to try and get off the prednisone...

to

> do this they replace it with an immunosuppressant to keep the immune

> system from pumping out those auto=antibodies that are attacking the

> ;iver and causing the inflammation...Imuran is an immunosuppressant

that

> seems to be the best to use in this condition...it is usually given

> concurrently with prednisone as the prednisone is slowly being

> tapered.(Imuran may take 4 weeks to work optimally) Imuran seems to

be

> one of the drugs taken post transplant that has the least

> sodee-effects....It is well tolerated my most people. Occassionall

> someone can't tolerate it and a substitution is found like 6mp or

> cellcept.

> Don't worry you doc knows whats up.

>

> love jerry

>

> BTW...prednisone is a steroid (a corticosteroid) as such it boosts

the

> adrenal gland function. The adrenals produce such enzymes as

cortisone

> whose job it is to control inflammation

[Guest guest]

how is Imuran in regards to other meds... is it a biologic or a dmard?

Sorry, don't remember much about that med

[Guest guest]

I have been off Imuran a few times and did okay until I was taken off the prednisone. This is a decision that only you and your docs can make. Everyone reacts diferently.

Good luck,

the WV hillbilly

[Guest guest]

In a message dated 8/23/2005 7:19:26 PM Eastern Daylight Time, itsukat@... writes:

Honestly, I have not been back to see him and I stopped taking the Imuran (I just dont want the long term side effects of medications) and started taking various vitamins. I feel better then I have in years

Kathy

If you don't see the doctor and have the bloodwork done you won't know what's going on with your liver. For the amount of damage to my liver, I had to have AIH for a long time before I felt sick enough to see the doctor. I'm sure your doctor wants you off the meds as much as you do--but not before it's save to do so. With this disease you have to think long-term.

Best Regards

Elaine

Long Island NY

[Guest guest]

hi, my daughter has AIH, she is 12 now, she was dx in nov 2003,just

under 11 yyears old, this disease ran ramppant in her body for god

knows how long before she was in end stage liver failure, we were

lucky they saved her with prednisone and imuran, we have reduced her

prednisone down to 5mg then her aih flared up again, so it went back

up and then so did the imuran to 100mg, we are now back down to 5 pred

and keep up the 100 imuran to keep her stable, i'm sorry i ramble on,

my point is that if you stop taking the meds your immune system can

continue to attack your liver and you might want to watch it so it

doesn't cause ireversible cirrosis, my daughter's liver is a

shrivelled crust of scarring. we are trying to keep her heathy with

these drugs until inevitably she will need a transplant. our doctors

want her to finish growing and go through puberty before they

transplant. i'm not sure if her age being so young has anything to do

with the severity, maybe your aih isn't as aggressive but i would be

worried about going off medication this soon. sorry if i'm too abrupt

but i'm a very worried mother. Good luck, Ruth

> I have a question about meds. I have AIH...since 2003. Biopsy showed

stage 1

> - that was 2 years ago. I was on Prednisone for about a year

simotaniously

> with Imuran. The DR. took me off Pred last August. Said numbers

looked good.

> Stay on Imuran and see me every 3 months. Well.. Honestly, I have

not been back

> to see him and I stopped taking the Imuran (I just dont want the

long term

> side effects of medications) and started taking various vitamins. I

feel better

> then I have in years. Has anyone else ever been able to ditch the

Imuran

> totally. And not make yourself worst? Thanks.

> Kathy in CA

[Guest guest]

Kathy,

In my opinion, it is not a good idea to stop taking the meds without

your doctor's supervision. Prednisone did not work for me and I was

weaned off it as you should be - very slowly.

My hep declared the AIH (I also have PBC) to be in remission and

weaned me off the Imuran by cutting the dose every so many weeks.

At that time I was having my blood work done on a monthly basis and

seeing the hep and my GI every 3 months.

After being completely off Prednisone and Imuran for a year, my

LFT's are still within normal range and the hep says he no longer

needs to see me unless there is a problem. He said if I feel I

should see him yearly that was fine. He does still want blood work

every 3 months to monitor my LFT's and for me to see my GI every 3

months.

From everything I've read, not taking treatment has a 50% chance of

being fatal within five years.

Sandy C.

[Guest guest]

Re: imuran. Could you offer a little more detail on the tests and precisely

what they were for? Seems like they were to determine if you would have any

side effects from Imuran; and Thiopurine Level, phenotype are???? Sounds pretty

interesting.

I only know about Imuran from my two neices who have been on it for 1)

Ulcerative colitis and 2) Crohn's Disease. So, their experience will likely not

translate but for what it's worth, it didn't work particularly well for either

of them; and the one who has Ulcerative Colitis ended up getting several skin

cancers as the result using it and was constantly having to get blood work done

because Imuran lowered her white count too much (both known side-effects of

taking the drug.) She has now finally agreed to go on Humira which she'd

refused to do for a long time because she has young children (she's only 34 and

has had UC since she was 17) and didn't like the risks of taking it, though in

my mind they weren't all that much worse than those for Imuran.

Virtually the same thing can be said of all the drugs for PA, though: all have

side effects and they each work for some, not others. If your rheumy suggests

it, at least give it a try.

Joanna Hoelscher

[Guest guest]

Dolores, I don't think you would want this toxic drug.

HTH

GENERIC NAME: AZATHIOPRINE - ORAL (aze-uh-THIGH-oh-preen)

BRAND NAME(S): Imuran

Warning | Medication Uses | Other Uses | How To Use | Side Effects | Precautions

| Drug Interactions | Overdose | Notes | Missed Dose | Storage | Medical Alert

WARNING: Long-term use of this medication increases the risk of developing

neoplasias (cancerous or noncancerous growths). Azathioprine can also cause

blood disorders (e.g., leukopenia). Immediately notify your doctor if you

develop unusual growths, easy bruising or bleeding, or signs of infection such

as persistent sore throat or fever.

USES: Azathioprine is used to prevent rejection of transplanted organs and for

cases of severe arthritis that do not respond to other therapies.

OTHER USES: This medication may also be used to treat ulcerative colitis and for

other purposes as determined by your doctor.

HOW TO USE: Azathioprine tablets should be taken with food or milk to prevent

stomach upset. Take this medication exactly as prescribed. Do not stop taking

the medication without your doctor's approval.

SIDE EFFECTS: Nausea/vomiting, loss of appetite or diarrhea may occur. If these

effects persist or worsen, notify your doctor promptly. Unlikely but report

promptly: hair loss, unusual fatigue, stomach pain, joint or muscle pain, vision

changes. Very unlikely but report promptly: yellowing of eyes or skin, darkened

urine, unusual bleeding or bruising, unusual lumps or growths. In the unlikely

event you have an allergic reaction to this drug, seek medical attention

immediately. Symptoms of an allergic reaction include: rash, itching, swelling,

dizziness, trouble breathing. If you notice other effects not listed above,

contact your doctor or pharmacist.

From Dowling, editor and priest, Chicago Daily News, July 28, 1941:

The two greatest obstacles to democracy in the United States are, first,

the widespread delusion among the poor that we have a democracy, and second,

the chronic terror among the rich, lest we get it.