HealingWell
Search Close Search
☰

Autoimmune hepatitis

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/17/2009 6:04 AM (GMT 0)
Hi I am a new member. I have had AIH for 15 years now. I'm on 50mg Imuran. I feel fine. I forget sometimes I'm sick. I'm 30 years old and trying to get pregnant. I have been trying for 9 months now and starting to worry  my diease is preventing me from getting pregnant. I'm also scared to get pregnant on Imuran. Is it safe? Can someone tell me there  story about being on Imuran and having a healthy child..
Posted 9/17/2009 2:56 PM (GMT 0)
Cj7,

I was wondering how your pred wean was going?  Sorry I missed your post earlier or I would've suggested the very slow wean my hep took me on from 5mg to 0.  It was a 2 month wean as the 5mg to 0 wean is the most difficult on the body.  I had been on 5mg for 11 months.  As I did the wean, I dropped 1mg every 2 weeks...that's why to get to 0 took 2 months.  So I hope your drop to 2.5mg worked but maybe suggest that further drops are much slower...this enables your adrenal glands to kick back into steroid production.

Let us know how you are,

Posted 9/17/2009 4:43 PM (GMT 0)

Hi dany, thanks for letting me know you were concerned for me. It means a lot. Yes, We are dropping 2.5 at a time. It's been great. I was down to 2.5 and not feeling well at all. I started to have a lot of pain across my abdomen and liver. My stomach swelled up incredibly and all my body wanted was to sleep abouot 18 hrs a day. I couldn't hold my head up. I would have hunger pains and eat, but could only take a few bites and would feel sick. Next found myself on the toilet. I am having an x-ray and ultra sound on Friday morning. I  hope it tells us what is going on. They don't feel I have fluid in the stomach. I hope it is something very simple. I couldn't take on another disease.  So until I feel better My Doctor put me back to 5mg of pred. Then I want to take it really slow on the rest of the drop. I will let you know how things come out. Thanks for caring

cj7

AIH-93, Meds- Pred-5mg, Immuran-150mg, Prograf-2mg.

Posted 9/17/2009 5:00 PM (GMT 0)

bulldoglover said...
Hi I am a new member. I have had AIH for 15 years now. I'm on 50mg Imuran. I feel fine. I forget sometimes I'm sick. I'm 30 years old and trying to get pregnant. I have been trying for 9 months now and starting to worry  my diease is preventing me from getting pregnant. I'm also scared to get pregnant on Imuran. Is it safe? Can someone tell me there  story about being on Imuran and having a healthy child..

Welcome bulldoglover, I am a Goldendoodle girl, We have 2.

I have had AIH for 16 yrs.  They immediately told me I had to go off birthcontrol. I already had to beautiful girls. They were 5 and 9. We were very careful about natural birth control, But it did happen anyway. I became pregnant. I was scared and excited all at once. The doctors told me I had to abort. My husband and I were crushed. They could take me off the drugs through the pregnancy and my hormones would probably take care of me. Until the baby would be born.  Your hormones take a nose dive after birth. That's when the scary part came, I could die after the birth because they wouldn't be able to get my drugs back in my system fast enough.

And of course I had been on the drugs when I got pregnant and their was no way at that time to know what damage the baby might have. It was the hardest thing I have ever gone through. I had to carry the baby for 3 mths and then abort. I have tears everytime I think about my little baby that would be 14 yrs in Feb,10.

So please get all of your facts and know all your options before you do this. I do know how much having a baby means to you.  I was on Immuran and pred. I hope that you will be a lucky one who beats the odds. Take care

cj7

Posted 9/19/2009 6:19 PM (GMT 0)
In my research of Milk Thistle, because nutraceuticals are not regulated by the FDA in the same manner as they do prescribed pharmaceuticals, they are not all manufactured to the same standards. I have found that some manufactures do manufacture their products as "pharmaceutical grade" and they seem to be a higher quality product. I am impressed by the Metagenics's website and am using their products.
Posted 9/19/2009 6:30 PM (GMT 0)

Bulldoglover, I just wanted to welcome you to the forum.  I am glad that you received a post in response to your questions.  I would definitely discuss pregnancy and medication issues with your hepatologist prior to trying to get pregnant.

You might also want to start a new topic to introduce yourself and your situation.  This way, you are likely to get more replies and not "fall through the cracks."  I almost missed your post.

Hugs,

Connie

Posted 9/24/2009 3:56 PM (GMT 0)
Hi,

This is for the young 24 year old and anyone else who may have AIH. I am a 55 year old female, and I was diagnosed with AIH 3 years ago. I live in the southern part of the US. I started on prednisone and mercaptopurine. Many doctors do not tell people that there are other alternatives to these drugs that have less side effects. After taking the prednisone for a year I was so ill from the drug I simply refused to take it anymore. I gained 25 pounds from fluid retention in 6 months in spite of going to a gym,and had to go on a diuretic. I also developed skull splitting headaches, and had to go on a beta blocker. Plus, I developed highblood pressure and high cholesterol, which I have never had in my life. People I had known for years said they actually thought I was going to die. Up to this point I was always a very healthy and slender person. All of these health issues were side effects of prednisone not caused by AIH. The mercaptopurine caused severe stomach irritation and did nothing at all for the liver as far as the doctor could see. But he made it clear that these were the standard medications for AIH.

Finally, he sent me to Duke University Hospital where they are suppose to have the latest and greatest in all treatments. I saw a doctor who specializes in AIH and with in 25 minutes he not only changed my life, but probably saved my life. He perscribed Cellcept also known as mycophenalate. With in two weeks I was a different person and I haven't taken prednisone or mercaptopurine since. The patent just ended on Cellcept and it now comes in generic form. It is a more expensive medication, but I have had little or no side effects. I no longer need the other medications and my liver stats have been normal for 2 years. Eventually all of the bloating from the prednisone went away and I look like my self again. The doctor plans to start reducing the Cellcept next year since he thinks I may be in complete remission. My only advice to anyone wanting off prednisone is to take the Cellcept with food since it can cause a little stomach discomfort in some people. Ask the doctor to start out at a low dose to see how you are going to react to it and increase it based on blood tests. I started out at 2000MG per day which some doctors consider standard and was able to drop to 1500MG shortly there after with no problem. If I had to do it over again I think I would ask the doctor if I could start out at 1000MG per day and work up.

Although Cellcept is a transplant drug that prevents organ rejection, it is being used to treat numerous autoimmune diseases. The company that makes it is getting the FDA to approve it for the treatment of autoimmune disease. I think it has been on the market for about 16 years or so. The possible side effects for Cellcept are really no different for those of any immune supressing drug, so don't let them scare you.
I hope this helps somebody.
Posted 9/24/2009 9:54 PM (GMT 0)
Hi, Old Mama, and welcome to the forum!  Thanks for the input and info re: your AIH and Cellcept.  This is a good place for information and support.  We need more people with AIH, so I hope you will post often.

 

Posted 9/25/2009 4:25 AM (GMT 0)
Hey all,

I started on CellCept a week after I started on Prednisone.  They wanted me on a quick acting immunosuppressant.  After I was stable they switched me to Imuran since it's an older drug with a longer known history.  Sadly, I may be having issues with the Imuran now.  I've been off the pred for almost a year.  Haven't been having any issues until my last doc visit 3 wks ago.  My LFT's were fine except for my bilirubin.  It's not high, only 2.5 but it's high enough that he thinks it's cholestasis which would be a hepatotoxic effect of the Imuran.  He was going to start decreasing it but I didn't want to risk a flare right now so we tried Urso.  I have access to a blood machine at work and had a coworker draw my bloods the other day as I started getting really itchy.  It's still up there so the Urso isn't working.  I'll go to the hospital for labs next week so the doc sees them and we'll see what to do.  Hopefully a lower dose of the Imuran works and my liver can handle it...otherwise, I may flare and need to go back on the pred :-(  I may ask him if popping right on CellCept would be a better alternative.

Fingers crossed!

Posted 9/25/2009 2:26 PM (GMT 0)
 

Hi All,

Well I got my first lab results yesterday after starting 6MP and they were pretty good my AST was 35 and my ALT was 64 both down about 5 points I was hoping they would both be normal but at least they went down some and my AST is normal again.  They still want me to stay on the 20mg of Prednisone with the 50 of 6MP for another week then down down to 15mg of Prednsione.  My question is does it take a while for the 6MP to start working and is it safe to start to wean down on Prednisone if my ALT's are still elevated?  I just do not want another flare up where I have to increase the Prednisone.  My Hep doctor feels the Prednisone is causing fatty liver in addition to the AIH and I just cannot lose any weight on 20mg of Prednisone.

Dany maybe they can switch you to 6MP which has the same chemisty of Imuran in the body but according to my doctor easier to tolerate.  I was unable to take Imuran but so far ok on the 6MP.

Jerry1   

Posted 9/25/2009 7:16 PM (GMT 0)

DGinSD said...
Hey all,

I started on CellCept a week after I started on Prednisone.  They wanted me on a quick acting immunosuppressant.  After I was stable they switched me to Imuran since it's an older drug with a longer known history.  Sadly, I may be having issues with the Imuran now.  I've been off the pred for almost a year.  Haven't been having any issues until my last doc visit 3 wks ago.  My LFT's were fine except for my bilirubin.  It's not high, only 2.5 but it's high enough that he thinks it's cholestasis which would be a hepatotoxic effect of the Imuran.  He was going to start decreasing it but I didn't want to risk a flare right now so we tried Urso.  I have access to a blood machine at work and had a coworker draw my bloods the other day as I started getting really itchy.  It's still up there so the Urso isn't working.  I'll go to the hospital for labs next week so the doc sees them and we'll see what to do.  Hopefully a lower dose of the Imuran works and my liver can handle it...otherwise, I may flare and need to go back on the pred :-(  I may ask him if popping right on CellCept would be a better alternative.

Fingers crossed!

Hi Dany, I have been on them all and I would want to go back to cellcept and then when labs are stable wein off the pred. Cindy
Posted 9/25/2009 7:25 PM (GMT 0)
Hi Dany,

I have never had good luck with weining off pred with any of these drugs. I have been on this stuff for 16 yrs. My body is falling apart due to it. Jerry's idea of 6mp might work. we tried it and no luck. I am on Imuran 150mg and down to 5 mg of pred and also prograf 2mg  which is used for transplant patients. They are finding it is helping AIH patients at a low dose. I have never been able to drop past that 5 mg. But it's so far hopeful.  I hope this helps you could mention it to your Dr.  My Dr. is at Mass. General in Boston. One of the transplant hospitals.s

Good luck!   Cindy

Posted 10/3/2009 10:20 AM (GMT 0)

I have a decease, I have AIH and PBC....well that quit right...my wife has theese deceases.

There I have it too, so Im here to learn all what I can about AIH and PBC.

Right now "we" are on Entocord for the AIH, 4 weeks, and Ursofalk for the PBC, since February.

Right now there a lot of bloodtest to see if thne livernumber goes down.

We are thinking, reading, hearing from all sources, so if anone could tell what we have to expect, I would be very glad.

Thanks in advance from Denmark

Whats under the sky, is naturly.

Whats over...................is flying.

Posted 10/3/2009 1:12 PM (GMT 0)
Hello JFT and welcome to HealingWell. I am sorry about your wife having AIH and PBC. As you can probably see, we have quite a few very knowledgeable members who are dealing with AIH. Someone should be on soon that maybe able to give you some answers and support concerning it.

One thing that I would like to ask you to do, is to post a new thread to introduce yourself to our wonderful community. When you make your first post as a reply to someone else's , people may miss it that can really be of help to you.

Again a BIG WELCOME, we are glad you found us.

Take care.........thoughts and prayers..........
✚ New Topic ✚ Reply
12