Living w/ AIH & ready to start a family

Im new to this forum, so please bare with me. I'm 32 & was diagnosed 18 years ago. I had rec'd approx one year of treatment prior to going into remission & suffering my first flare up 10/2011. I've had several miscarriages while in remission w/o treatment. Now I am on 75 mg of azathiroprine & I'm being told its necessary to stay on it to carry a pregnancy to term, however, I know there are risks to that drug. Any success stories out there?

Ladybug, welcome to the forum. I recall one lady with AIH who had a baby, after being told that she shouldn't get pregnant. Both she and the baby were fine.

My co-moderator, Dany, has AIH. I will alert her to your post as she may have some input for you.

Hugs,
Connie

Dany,
I'm not currently working with a high risk gyno as of yet, but have been told I will once pregnancy is confirmed. I have a preconception appt scheduled but I'm wondering how necessary that is, any idea?

I had my son after being diagnosed with both Sjogren's syndrome and AIH. I was monitored closely by a Sjogren's doctor, and my hepatologist, along with the high risk obgyn team.

The pregnancy, birth and child were normal. OK, the child is a pain in the neck, but he is seventeen and is itching to go off to college to be on his own!

But I digress.

The problem was that one month after my son was born, I had blood work done and every thing was normal. I started having vague stomach pains for the next few months, but I chalked it up to the stress of a baby-newborn. By six months after my son was born, I discovered that my eyes were yellow.

I was immediately put on prednisone and imuran, and stayed on those drugs for about three years. I was very ill at that time. It was found that my liver was cirrhotic. No one really knows when the cirrhosis occurred. There is evidence that I have had AIH since I was 17, and who knows how long I had it before that. I had my son when I was 31.

Bottom line is that I was listed for transplant when my son was 11 months old. Fortunately, I got better, VERY slowly, and wound up not needing the transplant.

We adopted our second child, another boy, via domestic independent adoption. He is the perfect fit for our family.

As strong as the desire is to have a biological child, if I had the benefit of knowing how the pregnancy would affect my long term health, I would have probably chosen not to have a bio-kid in the usual way. In certain circumstances, I could imagine using a surrogate with my egg and hubby's sperm, or just pursuing an adoption. Our adoption was very costly, but again, knowing what I know now, I would not shy away from adopting out of the foster system. My friend's daughter was adopted that way, and man that kid is a joy. It is truly a blessing and a miracle that we were made to turn to adoption due to my health.

I think that perhaps I took a risk that I should not have taken. I wonder how much I actually listened to the five medical opinions I got prior to getting pregnant.

I don't know if there is anyone who specializes in ladies with AIH who want to get pregnant. There is someone who specializes in ladies with Sjogren's who want to get pregnant. She is an amazing researcher and clinician who gave me the best advice throughout the pregnancy. I consulted with Albert Czaja MD at the Mayo Clinic, who I believe is doing the most research on AIH of anyone in the US, but I don't know how much he deals with AIH and pregnancy. My local high risk obgyns were clueless about how to deal with me, but they were wise enough to work closely with my other specialty physicians to assist me in having a healthy baby.

Now the baby is six foot one, smarter than his mom or dad, and wants to study sociology, specifically how people are influenced by social media, and how people make decisions in groups. He wants to be a college professor. : ) Sorry for the Mama Brag.

Boy number two is an amazing lacrosse goalie. He can memorize lyrics and movie lines like no one I have ever seen. He loves history and science, but his best subject is math. He has dyslexia, which is going to force him to use assistive devices to keep up with the reading and writing as he gets older. He is just excited that he is going to be able to walk through school with an ipad all the time. I have never seen anyone in my life who can turn lemons into lemonade in the way this kid does. Despite his learning disability, his other skills and his amazing attitude will insure that he is successful in whatever he pursues. : )

Please don't hesitate to ask more questions.
Susan

Dany/Susan,

I'm a new moderator here, and just learning the ropes.

But as I observe, the AIH postings get VERY high # views.  And not so many posts.  This is an important discussion were are having here about bio children/adoption/surrogates and at risk pregnancies.

I wish more of our AIH readers (be they patients or spouses or loved ones) would share their stories, as there is obviously a large group out there.

Thanks for starting this thread and for examining it from several angles.

Other views?  I have no experience with AIH and am generally silent on these threads, but I read them all...educating myself.  I have one daughter with OTHER autoimmune problems, so I learn a lot.

Carol

Susan, a squeeze of lemon on those veggies or the chicken tastes amazing. You will not miss the salt.

Hugs,
Connie

To add to the debate. I 'know' (as in know via an internet support group) about 15 or 20 women with AIH who have had babies whilst taking azathioprine. All of them have been fine and given birth to healthy babies - some of them have now had 2 or 3. None of them had any trouble keeping their AIH under control after the birth although some needed adjustments of the med doses during pregnancy as they needed less meds - and then needed to go back up to their pre pregnancy dose afterwards. Most got pregnant with the full support of their heps, some it just happened and at least one was diagnosed with AIH and started treatment whilst pregnant.

There are many debates about the treatment of AIH and we find that different doctors have different views. Usually these differences seem to have little pattern but with pregnancy it does seem to follow a geographical pattern. Doctors in the US seem much more wary of their patients becoming pregnant on azathioprine than doctors in other countries. I don't know why and I guess the jury is out on what approach is correct.

Ann

Isergodur, your spelling was perfect. Those with English as a second language get a pass, anyway. My complaints are really only those things that people should have learned in grade school and should learn about their disease and medications.

Congrats on your twins! I hope all goes well for you.

Hugs,
Connie