Hi Jellyfish,
How are you doing?? I can't say that I am in the exact same situation of you, but, I too would like to have children. I would have liked to have children years ago...but...unfortunately things have not worked out the way I wanted. I was in remisson for about 5 years....with the help of Plaquenil (400mg/daily)...got married...and wanted to have kids! I too, did not want to be on any medication so my doctor, upon my suggestion decided that I could taper off my meds! I did that for 6 weeks and then stopped all meds. I felt GREAT for 1 week and then completely flared up again. That was 2.5 years ago...and I've been in a flare ever since! The plaquenil alone would not work, so they tried varying doses of Prednisone, Imuran and Cellept. I had so many issues/side effects from all the meds and was completely frustrated. I decided that I had to do something! I wasn't getting any younger and really really wanted kids!! So...after considering it for many years...I finally decided to see a naturopath. I was totally against the idea and refused to listen to anyone who suggested this! However, I was running out of options and thought I have to do something. Since then, things have improved significantly. I have lower my meds...and while I don't know if I'll ever be off them completely...I feel like I'm making progess.
I don't know you situation, but, this is something you might want to consider. I feel your frustration and wish you all the best. Please e-mail me if you have any questions...or if you just want to vent!! All the best and good luck!

have you ever thought of adopting? Just something to think about.

that is one of my frustrations too . ive been on my medications since i was 14 yrs old . im not worried about anything else any pain what so ever but like you, i really really want to have healthy kids and my doctor said that it is possible to have a normal birth but it is really frustrating

im 20 yrs. old right now, is there any success story out there ?

A friend of mine, never having been diagnosed with or noticed any symptoms of lupus had a healthy, full term baby boy at a birthing center with a midwife.

Two yrs later got pregnant again, didn't go for prenatal care till 4 months. They couldn't find a heartbeat and sent her to the high-risk ob clinic at U. of Colo. Med Center. They found the heartbeat, but it was only 60 bpm (normal fetal rate is 120-160 bpm). They suspected lupus and she tested positive for ana specific to lupus (anti-RO and/or anti-LA and/or others I think). They said it was heart block, common to babies of lupus mothers. At 6 months she didn't feel the baby moving for 2 days. The heartbeat was down to 40, they delivered her immediately, but she had too many damaged organs and only lived about a day.

She didn't want that again so avoided pregnancy. They said if whatever the ana was that caused it went down, she might have a healthy baby. Ten years later, she got pregnant again and she had a healthy full term baby girl, named Victoria.

I have heard that fulic acid is good to take before getting pregant it makes for a healthy inviorment for a baby to grow.I have had lupus for 5 years have had no support from husband and I also had seizures before I knew I had lupus. and I had gone to a dermatolgiest and they did a skin graft and it came by it was lupus and an ana test needs to be ran also to those who are wondering. and if you live im missouri then get in to see dr. mark box he's a great dr.

I have had 2 miscarriages and it is devestaing. I have tumip lupus adn sarcoidosis. I had the best high risk pregnancy doc in the world in Providence RI, Dr. Ray Powerie. I hope you had the baby, but either way if you live close enough, check into dr. powerie!

I am from Missouri! Where is Dr. Mark Box located? I would also like to hear success stories! I really want to have a child of my own but hearing all of the risks I am thinking adoption sounds like a better option. I don't know what to do. This is so hard to deal with when you dream for so long to have a child and then hear that you shouldn't or can't.

I've managed to find a really supportive fertility specialist, who starting me on IVF. Once I'm pregnant I'll be taking prednisone, and I already take baby aspirin. This is because I have antiphospholipid syndrome, which many lupus patients also have. Anyone who's had a miscarriage (or any lupus patient who's thinking of getting pregnant) should really get their doctor to do a blood test for antiphospholipid antibodies.

Denzildragon,

This was the first that I had heard about the Antiphospholipid Antibody Syndrome. I did some research last night and will be asking my doctor to test me. I want to find out if I have this before I consider getting pregnant. I already take a coated aspirin daily to help with circulation (Raynauds-Scleroderma) and wonder if I could have this also. Has it caused problems for you? Let us know how it goes with you!

Jessica