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Lupus and miscarriage

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Posted 7/2/2008 6:36 PM (GMT 0)
Hello Everyone,

I am new in these forums and I want to share my story and find out if some one has gone trough the same as me and my husband did. 

 I am 31 years old and I have been living with lupus since I am 21, we just did an IVF treatment and we did it because doctors recomended to us because I am stable and I didn't have any flares up so we did it and it was succesful, I was pregnant, but when we went for the ultrasound at 11 weeks my doctor told us that the baby stopped growing and there was no more heart beat. So me and my husband were and still are devastated. These last days have been terrible and I don't even know where to start again.

I just wanted to share my story and I need some support from someone that has gone trough the same thing or even if it is not the same thing I just need to let it out.

Thank you so much.

Posted 7/2/2008 6:51 PM (GMT 0)
Get tested for anticardiolipid and atiphospholipid antibodies and the lupus anticoglutent. These can cause blood clots, it is possible you developed one in the baby's blood supply (placenta). There are safe treatments for this. I have been through 4 miscarriages myself back before I was diagnosed. I have also delivered 5 babies. So even if one of those tests come up positive you still have a good chance of having a perfectly healthy baby. I am sorry you had to suffer a miscarriage, it is nearly as devistating as losing a child after they are born. Good luck.
Posted 7/2/2008 7:02 PM (GMT 0)
((((((((( Bichita )))))))))))) Hugs for you sweetie! Welcome to the forum. I'm so sorry you suffered such a loss. Redrose is right. Those blood tests are easy and accurate. I think you'll find lots of support and info here. Glad you found us! Blessings!
Posted 7/2/2008 9:23 PM (GMT 0)

Thanks for your response,and for your support.

I got tested for all that and actually I was taking baby aspirin and inyections of lovenox, also I am taking prednisone, folic acid and precare conceive vitamins.

Everything was going fine, I went to see my reumathologyst and nefrologyst as well and everything seemed fine, so I don't know exactly the reason of my miscarriage, next week I have appointment with my IVF doctor and I will ask him exactly what he thinks, also I ended up having a natural miscarriage so they recovered the sac with the baby inside even the baby was so little they still are going to do tests in order to know what happenned, my doctor told me that sometimes they can tell what was wrong or if a chromosome was not developed, sometimes they can't tell. My natural miscarriage was two weeks ago so this is the moment when you have a lot of questions and any answers.

I have hope than me and my husband are going to have a baby, he is very healthy and even with my lupus I have been stable for the last 4 years.

I am glad I found this forum.

Thanks!!

Posted 7/2/2008 10:39 PM (GMT 0)
Hi there,

 

I'm sorry for the loss you and your husband went through.  Miscarriage is very common in lupus.  So did you test positive for those antibodies that Redrose mentioned?  If you did, baby aspirin might not be enough.  Even regular aspirin often is not powerful enough to help with the clots. 

 

I have all those antibodies, and I'm on warfarin to thin my blood.  Even being on that stuff makes my chances of miscarriage very high.  I've been told it wouldn't be very likely for me to carry to term, ever.  That's how signifcant these antibodies can be.  they do vary from person to person in severity.

 

I'd get a second opinion about your own situation and what medications you're taking to help thin your blood. 

 

Blessings,

Ginny

Posted 7/2/2008 11:34 PM (GMT 0)
((((((Bichita))))) I'm so sorry to hear about your miscarriage. I had a miscarriage about 7 years ago and it was one of the most devastating things I have gone through. I hope the docs can figure out what happened and that they can help you have a healthy pregnancy sometime in the future. Something I did that helped after I had my misscarriage was to talk to a grief counselor who specialized in dealing with miscarriages. She talked to me and my husband and we were given a very nice memory box filled with items to honor our baby and help us process our loss. Know that we are here for you. Take care and I'm glad you found our forum.
Posted 7/3/2008 1:30 AM (GMT 0)
((((((Bichita))))) I am so sorry for your loss. I've had 2 miscarriages, my first one was very physical, I was hemorrhaging, had terrible pain, etc. ended up having a DNC, it was terrible. My second one was just like yours, I passed it on my own but I had a harder time emotionally.

It's such a terrible thing to go through, keep letting your feelings out, don't hold it inside, we are here for you. I pray your doctor's find out what the problem is and that you will be able to have a successful pregnancy. You will be in my thoughts and prayers.
Posted 7/3/2008 3:16 PM (GMT 0)

Hello again,

Thanks for all your replies and it really helps to share our stories because at the beginning I felt I was the only one going through all this.

Ginny, my tests are positive for the antibodies that Redrose mentioned that's why I was on Lovenox that it is a blood thinner and also everyday I take baby aspirin but during the pregnancy I used the Lovenox everyday in order to avoid clots. So I don't know exactly what happened. Thanks for your words!

Stacie and hippiemom thanks for your support and I have been thinking of going to a therapist or counselor, there are some days that I don't know where to start but I know time helps and I need to be positive and have faith.

Posted 7/3/2008 5:43 PM (GMT 0)
I have to wonder if perhaps they did not get the exact dosage on the lovenox right for your baby and body. I have very low levels of the antibodies I mentioned and take baby asprin every day. That is all we did during my latest pregnancy as well. Note, if you require medication to keep the lupus quiet and they had you discontinue it there is a real possibility it was the lupus that caused the miscarriage. I know I continued taking all my meds during my pregnancy with a few changes for safer ones. I really hope that you find out what happened. Know that 1 in 4 pregnancies end in miscarriage in the normal population and that is only the ones doctors know about. My high risk OB said the rate is actually much higher.
Posted 7/3/2008 9:48 PM (GMT 0)
Thanks redrose for taking the time and replied me back. During the 11 weeks I was pregnant I was taking my medicines (prednisone, folic acid and precare conceive vitamins) I stopped the plaquenil because my rheumatologyst told me that it is better not to take it during the pregnancy so like I said I don't know exactly what happened, next Thursday I have an appointment with my IVF specialist so I know he will give me more answers to my questions.
My doctors knew about the levels of antibodies beause in 1999 I had thromboflebitis(I don't know if I spelled it right) in my left leg so they knew about my condition of blood clots.
Sometimes I think it was not the lupus because so far my lupus has been stable for 6 years, and before that I had some problems with my kidney and of course when I was diagnosed my health was in bad conditions.
Like you mentioned 1 in 4 pregnancies end in miscarriage and sometimes it is even more I have read so many cases and with women that don't even have lupus.

Thanks again.

P.S Sorry if I have some mistakes on my English I am from Mexico and I have been living here in the states for 4 years but sometimes when I write so quickly I know I make spelling mistakes.
Posted 7/4/2008 1:34 AM (GMT 0)
((((((( Bichita ))))))))) You are do a great job with your English !!! Good for you! I wouldn't have realized that English was a second language for you. Many people who post a lot just type fast and leave it. You've done really well. I lost one out of 5 pregnancies. But I think when it is your first pregnancy it is even worse. I hope things go smoothly for you next time. Two of the other 4, I had some bleeding at about 3 months that scared me . . . but all four were really healthy babies. I may have lost two others, but that was before pregnancy tests were readily available . . . so I missed a couple of periods and than had a really bad one. I think it was easier no knowing for sure. *sigh* I'm so sorry you are going thru this. I hope you find yourself expecting again soon. Blessings!
Posted 7/4/2008 2:26 AM (GMT 0)
Always Rosie thanks for your response and you put a smile on my face when you said that my English is really good!! Even I have just 4 years living here in USA I learned English since kindergarden so that really helps.
You are right about that it was easier when not knowing for sure, now with all the technology and everything you can know so many things in a short time I saw and heard the heart beat and I saw the baby moving so when I saw my last ultrasound with no movements I was devastated. I know all the new technology is great but also it is hard in this kind of situations.
I will keep you posted about my next dr. appointment and thanks for your blessings.
Posted 7/4/2008 3:32 AM (GMT 0)
Your very welcome Bichita !! Glad you found us. Blessings!
Posted 7/4/2008 3:49 AM (GMT 0)
Rosie is right your English is great!! I've lost 2 out of 4 pregnancies, it's a hard thing to go through. You are in my prayers.
Posted 7/4/2008 4:06 AM (GMT 0)
I want to give you some information but also want to remind you I am not a medical professional. My last miscarriage I had been on plaquenil but my OB made me stop. The baby stopped growing within 2 weeks of his insisting on this change in my meds. I did not miscarry naturally and required surgery. My recent pregnancy I stayed on the plaquenil with the approval of genetics specialists, high risk specialist, regular OBs, and my rheumy. Apparently they have let women stay on plaquenil over in Europe for years with no problems.

We do not know why I miscarried the last time but they suspect it was a clot. The others are right your English is great. You are doing better than I do some days and English is my first language. Miscarriage sucks but sometimes it prevents an even worse loss later on. I speak as a mother who has had both kinds of losses- miscarriage and death in early infancy. I also am a mother who has 3 healthy children, 1 of whom is not quite 2 months old after being told I would never have children and then later that I could never try again.
Posted 7/4/2008 2:36 PM (GMT 0)

I am so sorry you lost your baby. The pain will never go away, I know. But it gets easier and its ok to think about the what might have beens. I, too, have lupus, diagnosed after 2 healthy daughters, a son stillborn with strep B, a dx of APA, high anti strep antibodies, and a fight for a reason for 5 eight week miscarriages. Finally, a dx of anticardiolipin antibody syndrome, way back before it was known as antiphospholipid antibody syndrome: APS. My immunologist and an infertility specialist I saw in NYC, both said had I been treated after the first miscarriage, my odds would have been greater. I had high antibody levels. As it was explained to me, antiphospholipid antibodies are large, and they circulate in a mother's blood stream, until the placenta is formed, when they literally are too large to fit through the tiny blood vessels in the growing placenta, cause larger and larger areas of the placenta to infarct, and the baby fails to thrive, and then is miscarried. The tx for me was heparin, prednisone and baby aspirin but I was found to have intrauterine group B strep and staph and became septic, and I was finally given no chance of carrying a healthy baby to term. So,when I turned 40, I gave up trying. I was so determined to have another child no matter what God said, and truly felt that if I got pregnant just ONE more time....... it was a chance. I have two daughters both struggling with infertility, one with endometriosis and one who had a miscarriage in July, and because of my hx, went right to a reproductive endocrinologist high risk OB and was given a prophylactic baby aspirin (which acts as an antiplatelet anticoagulant, that causes platelets to be less sticky) and who is now 22 weeks pregnant with a healthy baby girl named Avery.Thank God. My son would have been 20 on July 19th. Please find a dr. who is willing to order every blood test available on the face of the planet for you. The specialist told me the antibodies can disappear over time and recommended regular blood checks. Since I was dx. with lupus after a positive ANA, my immunologist does blood work every 6 months and I am on a baby aspirin and prednisone 5mg every day or I can't walk because of ataxia and muscle weakness. I am so sorry for your sadness, and I know how much you and the baby's daddy wanted that baby. After my son's loss at 20 weeks, I went to Share, a monthly support group for people who lost children through miscarriage or neonatal loss. It helped me immensely, and I am nurse who had a big support network to start with. Hugs and prayers for comfort for you and your family,

sue 

Posted 7/7/2008 6:01 PM (GMT 0)
Hi
Redrose and Sue thanks for sharing your storie with me and it really helps to know more things and I can ask my doctors more questions.
I really trust on them and I know they are very good doctors but it is always good to know more cases and scenarios I know that things happen for a reason even if I did everything right and I took all my medications there is God that knows what is going to happen. The other day I saw a book named "We plan, God laughs" and I think it is really true because you never know what it is going to happen tomorrow.
I am glad I found this forum and it is great to share different stories and situations about lupus. I can't wait for my doctors appointment on Thursday I hope I can have more answers and If I don't I just want to be fine get back on track and start trying again. My husband and I did the IVF with just after 4 or 5 months of trying to get pregnant so know we want to try again and pray tha this time works without IVF.
Thanks again!
Posted 7/15/2008 1:16 AM (GMT 0)
Hello everyone, I just wanted to share an update about my health and my doctor's appointments. We went to see our IVF specialist and he told us that there's no yet an explication about my miscarriage, we are still waiting about the chromosomes results but he said that maybe we are not going to have any explanation there.He told us that I didnt have clots formed so he said that miscarriage was not related to Lupus. Today we went to see my r heumatologist and he told us the same thing because he said that my blood work and all my tests were fine while I was pregnant, all the antibodies were in good level so he said that the miscarriage was not related to lupus. As he said with all these we have more information and now we know that during my pregnancy I was doing fine and I didn't have any flare up. All these make us feel better because at least it looks like that the miscarriage was not related to lupus of course it is really hard and it is another thing that we have to live with but I have hope and confidence that in a future I will be fine. I just wanted to share my update and I still have to go with my neprhologist so will see what he has to say about all this, and there are sometimes that we dont have answers and maybe will never know why things happen. We just have to take care of ourselves and of course take all our medications! Today I feel better and like my husband said it is just one day at a time.Talking to all of you and sharing my feelings and situations helps me. Thanks
Posted 7/15/2008 1:54 AM (GMT 0)
Bichita,
That really does sound like a 'silver lining'. You will probably do great with your next pregnancy. Please know that you will be in our thoughts and prayers. God Bless You, Judy
Posted 7/15/2008 4:30 PM (GMT 0)
Yeah!! Great news Bichita, They couldn't figure out what caused my miscarriage either . . . but the following pregnancies were scary until I passed that point in the pregnancy where the miscarriage happened. I hope you don't lose a moment of the joy in your next pregnancy worrying over the outcome. We can't affect our growing baby one bit to the better by worrying . . . so each time that worry pops into your thoughts . . . just mentally pluck it out and toss it in the trash. Have a beautiful thought about your growing baby and enjoy each moment of your pregnancy. Wishing you the best!!! Blessings!
Posted 8/19/2008 3:05 PM (GMT 0)
Dear All,

I am new to this topic and for that matter, to this forum. I have read this thread several times analyzing your comments and I must say I have read information that can help me when I see my doctor in two weeks.

My sister was diagnosed with Systemic Lupus Erithemathrosus over a month ago, she unfortunately, died a bit over a week ago. This quick and devastating illness took us by surprise but we are determined to be educated about it and avoid any of the rest of us (we are 7 sistsers) to fall to it.

I have had several miscarriages but the last two were quite shocking. The first was very traumatic as I developed a huge blood clot and several small ones near the placenta. I "passed" several clots until I had lost so much blood that the doctor had to stop my pregnancy to save my life (literally I lost 2/3 of blood). Six months later I was pregnant again, all was well and normal but on the fifth month (late March 2008), I went into premature labor. Our baby was born alive, but died shortly after. I was told I had developed a strep bacteria that not only spread in my uterus but through my blood stream as well.

After reading your posts, after my sister's untimely death and seeing that I have never been tested for anything I find that I should go to the doctor and request testing... Your courageous stories are helping me better formulate my worry to a physician and swim with requests through hellishly managed health care. Any further comments on your experiences will be highly welcome, including diagnostic, symptoms and treatment. To all, Thanks!
Posted 8/19/2008 4:19 PM (GMT 0)
Hello all, I've had one very early miscarriage, but I am blessed with two very strong and healthy little boys. My last pregnancy I had placenta previa, but my son was born full term at 8lbs3oz. There is always hope and you never what God may bless you with.
Posted 8/20/2008 1:39 AM (GMT 0)
Hi Lailisima, Welcome to the forum. ((((((((((( Lailisima )))))))))))))) I'm so terribly sorry you lost sister. . . . and SO abruptly and fast!! I just gasped when I read your post. Just so you know, that is horribly unusual for a lupus patient. I'm so sorry. I also feel so sad for your struggle with pregnancies and the loss of your babies. I hope things go well for you if you decide to try again. Yes . . do become educated about autoimmune diseases. Not just Lupus. If a family member has lupus, others "can" be more inclined to some autoimmune issue. Don't let it frighten you, just make sure you know the symptoms and seek help when needed. There are some helpful links at the end of my signature that might help. It sounds like you have a good plan. I hope you will start a new topic and ask any questions you might have. Hugs for you Lailisima!! Blessings!
Posted 8/20/2008 1:40 AM (GMT 0)
Puccini . . . I'm so glad you added your post so folks know that a healthy baby really is possible. Thanks for your input!! Blessings!
Posted 8/20/2008 1:42 AM (GMT 0)
Puccini, it is so nice to see someone else with healthy children. I was blessed with a son in May and have 2 much older children from before my diagnosis.
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