Hi..i'm new!

[Carla1010]

Hi there...i'm new to this site...but not new to Lupus!

I was diagnosed at 10 with it...finally after tons of testing. I have systemetic lupus eurthmatosis. It affects my kidneys. Well at 14 when i decided to try my first drink..smoking..lol my lupus went into remission! I was lucky. I didnt think i could get pg as one dr. said i may not. So ofcourse being a teenager and "inlove" i didnt use protection and i got pg at 19. I was shocked but sooooo happy as i wanted kids so bad!! My pg went fine until the last month. I had really high b/p and swollen ankles, sharp shooting pains down my back and they admitted me asap. i was induced had a beautiful 4lbs 8oz baby girl!!! i married and then got pg 3 1/2 yrs later with my 2nd dauther and that pg was fine. then 2 1/2 yrs later i had my son...pg was fine aswell! I was lucky! I know that 3 children for someone with lupus is very lucky! I love my babies so much and being a mom is the best thing i've ever done...so fullfilling and hard and wonderful!!!

I'm re-married now and i desperately want a child with my DH. I know that i should be thankful for the 3 wonderful children i have and i am!!! But i dont feel done....you know that feeling in your heart...????

Well DH and i have been able to get pg...3 times! first pg July/05 loss at 4wks 3 days, 2nd pg Feb/06 loss at 7wks, 3rd pg Aug/06 loss at 6wks 2 days. After the 2 m/c's my dr. did multiple loss testing and 3 came up...my Antiphospholipids were 140 i was + ANA and something else...for the life of me i cant remember. so my dr. put me on 1 aspirin a day and blood thinners. 1 shot a day. So i thought i was safe with my 3rd pg!! I wasnt i started bleeding at 5 1/2 wks. I went to a hematologist and did alot more b/w....she had some results...i was still + ana...my antiphospholipids went up to 190 and there was alot more!!! I know this is partly my fault. I had taken Plaquenil before and my dr. years ago said i should stay on it. Well i stopped taking it before we decided to ttc. I shouldnt have huh? I am on it now and baby aspirin.

Does anyone have any similar experience??? And go on to have a healthy baby??? Should i give up??? My heart tells me NOT to give up. Anything else i should be taking???? Why would my number go up even with the blood thinners????? Is my body doing what it can to kill my babies???????

I'm just so glad i found this site so i could talk to other women suffering with this illness!!

[cath]

Hallo Carla,

Welcome to the forum, and nice to meet you!

I'm really sorry that you are having such troubles staying pregnant - it must be really heartbreaking for you:worried:

It sounds like you defniately have APS (antiphospholipid syndrome) secondary to SLE. Your doctors treatments of asprin and heparin is the right one.

Did you start the heparin and asprin pre-conception, or once you found out you were pregnant again? It might be worth starting pre-conception when you are ready to try again. How is the rest of you? How are your kidneys, blood pressure, general bloods and symptoms?

Plaquenil also has mild anti-clotting properties and will help a bit against APS. It works well for keeping SLE at bay too. I would definately stay on it while you are trying to concieve and during the whole of the pregnancy.
You might also like to discuss with your obstetrician and rheumatologist taking a low dose of prednisolone too. Keeping your autoimmune diseases as quiet as possible is your best chance of a succesful pregnancy. I know it goes against the grain to ADD drugs rather than stop them for pregnancy, but I think of it in terms of trying to set our bodies back to normal as far as possible, rather than taking a toxic substance...

Unfortunately Í can't predict for you if 'next time' will be OK. I sure hope so for you though...

X C X

[Carla1010]

Thanks so much for your reply Cath!! :)

I would definately be open to add prednisone if i need. I had been on it alot of it when i was diangosed and i did hate it..lol. I do love the plaquenil...but i would take the prednisone if it will help!!

My blood pressure has been good.......In January of 2006 (before my 2nd pg and then m/c) my reg blood work was okay and urine fine. But i will get a urine test when i see the rhuematologist as i know with this illness things can change fast!

I was actually on a break when i got pg the 3rd time...i was taking the injections but not daily as we decided to break. i was doing them every other day :( maybe thats where i goofed but we werent trying so?? :sad: Do you think with my high aps numbers I should be on blood thinners anyways?? even while not trying?? I just cant understand why my numbers Aps..would have gone up as when i knew i was pg i made sure i took the shots everyday!!!

[beauty]

and yes I was started on the shots before preg. forgot to tell u that