Recently diagnosed with lupus a couple of months ago have only seen my rumy a few times because my insurance doesn’t cover it. On my last visit she specifically told me not to get pregnant. Well surprise! Found out I’m 9 weeks pregnant! I’ve made an appointment with my obgyn. They can’t see me for another two weeks. I’m pretty worried and trying not to stress. Has anyone gone through this? Mostly I’m worried the ob isn’t going to take my disease serious :-/ any advise is appreciated! Thank you!
You may need a high risk OB, depending on what type of issues you have with the lupus. I would check in with your Rheum too. Not sure why she specifically cautioned you to not get pregnant? Best to check with her regarding any meds you may be taking too. Good luck.
Lisa,
I was unaware that I had lupus when my last son was born, 3 months premature. He is fine at 18, now, but I would have done much different then. I was 27 and did miscarry when I was 34 (7 weeks). First, DO NOT STRESS, I know easier said than done. 2nd, if you feel your ob/gyn isn't going to take it seriously, switch docs. Understand that the docs live under a fear of being sued and may feel that it may just be a lawsuit waiting to happen. In that instance I would assure the doctor, that you are aware that you are a "high risk" pregnancy and if they don't work with "high risk" refer you to someone who does. The majority is going to be on you. Rest, rest, rest. I am not a medical professional, just saying what I would have done, had I known. Eat lots of veges that tend to tighten the uteran wall, water exercise if possible, find a local lupus support group. You need to have daddy take on many of the physical tasks, grocery shopping, making dinner, etc. or the outlook is probably not super. If you have a nutritional store, there are many natural herbs that can calm the uterus, but check everything with both docs before taking anything.
XOXO Lisa,
DeAnne
I had a miscarriage at 13 weeks and my youngest I was in labor from 26 weeks but luckily kept him in until 37 weeks.I f o und out after I had him about the lupus. good luck honey
Hello Lisa,
"Congratulations" on being pregnant....i can't help you like other members can where getting pregnant is concerned and having a child, as i was never blessed in that manor plus my brain surgeon insisted on me being sterilized to make 100% sure.
Members will help a great deal in due course otherwise but i'll add some information regarding being pregnant while having Lupus and also a recent discussion i added which says alot about Lupus besides as you might find it helpful just being diagnosed....please try not to get to stressed out as it won't help you.
Hugs Terri xxx
Pregnancy Risks
Women with lupus are 20 times more likely to die during pregnancy than women without the disease. The risk for maternal death is due to the following serious conditions that can develop during pregnancy:
- Miscarriages. About 25% of lupus pregnancies result in miscarriage. The risk is highest for patients with antiphospholipid antibodies, active kidney disease, or high blood pressure.
- Blood clots. Women with lupus have a 6 times greater risk for developing deep vein thrombosis (blood clots) than women without the disease.
- Clotting complications. Low blood platelet count and anemia are also risks. Women with lupus are 3 times more likely to need a transfusion during pregnancy than women without lupus.
- Infections. Blood infections (sepsis), pneumonia, and urinary tract infections are more common in pregnant women with lupus.
- Preeclampsia. Women with lupus are three times more likely than healthy women to develop preeclampsia (pregnancy-related high blood pressure), which can be potentially life threatening.
- Birth Complications. Women with SLE have an increased risk of having a pre-term birth, stillbirth, or Caesarean section.
Despite these obstacles, many women with lupus have healthy pregnancies and deliver healthy babies. To increase the odds of a successful pregnancy, it is important for women to plan carefully before becoming pregnant. Be sure to find knowledgeable doctors with whom you can communicate and trust. Pregnant women with lupus should try to assemble an interdisciplinary health care team that includes a rheumatologist, high-risk obstetrician, and (for patients with kidney disease) a nephrologist.
http://forum.lifewithlupus.org/forum/topics/full-information-covering-everything-involved-with-lupus
Terri,
Even without having had a child, I am always amazed at the information that you can find for members.
Lisa, we will all be here for you, whether you are scared, depressed, angry or any other reason. This will be your go to group. Some of us have had children, some of us have not, some have had the unpleasant outcomes, but we are still here. This is a strong group and we will help hold you up (metaphorically).
Keeping a positive outlook will help you significantly.
XOXO,
DeAnne
Hi DeAnne,
I personally think the Lupus stopped me getting pregnant as i wanted a child badly in my late 20s but i got over it.
The trouble with Lupus it can stop you getting pregnant, causes miscarriages and alot of women have children as long as they take the appropriate steps and are under the correct specialists :) xxx
whathappensinvegas said:
Terri,
Even without having had a child, I am always amazed at the information that you can find for members.
Lisa, we will all be here for you, whether you are scared, depressed, angry or any other reason. This will be your go to group. Some of us have had children, some of us have not, some have had the unpleasant outcomes, but we are still here. This is a strong group and we will help hold you up (metaphorically).
Keeping a positive outlook will help you significantly.
XOXO,
DeAnne
I think that Lisa will have a good chance knowing going in that it will be risky. After this marriage I wanted very badly to have a child and my husband and I just never could get pregnant, although he is 9 years younger than I am. That was 7 years ago and we are adjusted to the fact that we never will, that said we enjoy each other and the things that we can do because we don't have children. When a door closes...
XOXO,
DeAnne
Well you look at your life with your hubby without children the same as i do with ste...he's my 2nd hubby so as children previous and me getting over it, it's all in the past and we live for today.
Terri :) xxx
whathappensinvegas said:
I think that Lisa will have a good chance knowing going in that it will be risky. After this marriage I wanted very badly to have a child and my husband and I just never could get pregnant, although he is 9 years younger than I am. That was 7 years ago and we are adjusted to the fact that we never will, that said we enjoy each other and the things that we can do because we don't have children. When a door closes...
XOXO,
DeAnne
Hello and yes- congratulations! I’m 35 and was diagnosed at age 17, had Lupus Nephritis, did a year and a half of chemotherapy (Cytoxan) treatments, and my doctors at Children’s hospital in Cincinnati, Ohio back then, knew that I wanted children someday and put me on an experimental drug to protect my fertility so the chemo wouldn’t make me sterile… Needless to say, it worked- the chemo put me in remission and I was very fertile afterward… I have 4 healthy children, ages 14, 12, 6, and 5. The word of caution I would advise is sometimes doctors take it too seriously and are overly cautious… With me, my OBs pushed me to get induced early with my first two because they were worried about me flaring during labor or immediately after (and there was no sign that was the case), and I ended up with c-sections with my first two, and the recovery was much harder for me… I was told I would never have normal births, and with my third child, was pushed to schedule another c-section, but I refused and took charge of my own care and found a midwife who attended my last two labors at home… I never flared during or after any of my pregnancies and in fact, one of the high-risk OBs I had with my first two told me, “if we could just keep you pregnant” because it seemed to go deeper into remission during my pregnancies… Everyone is different, of course, but I pray your pregnancy and delivery is as unremarkable and easy as my last two were… Don’t let them scare you into anything you aren’t comfortable with- and good luck!!! 
This is my second pregnancy. My first after being diagnosed. So far I haven’t had any problems. Im currently 13 weeks. Everyone is different so all you can do is take it day by day. Good luck
My rhuemotologist warned me about getting pregnant, but never told me not to! She just expressed to me that it is extremely important to get symptoms in remission and to stop my medication (CellCept) months before we start trying. CONGRATULATIONS! Take very very good care of yourself, and check in with your doctor often.
I have a happy healthy 14 year old that I was lucky enough to have before my endometriosis went full force causing the need for a hysterectomy. My doc believes that there is a connection with endometriosis and lupus therefore she believes I probably had it long before actually knowing. She also said there is next to no reason to believe I passed it on to her. My ob who delivered my daughter and is still my doc is very sympathetic to the whole lupus issue so if yours is not I would find one who is. Hope this helps. Congrats!!! Try to kick back and enjoy your pregnancy…the more relaxed and stress free you are the better for both you and baby. I know it’s hard!!! Best of luck!!!
I have no advice for you, sorry... But, I just want to say, I LOVE that you posted your positive news and for you to say your pregnant, gives me a young Lupus patient much hope. THANK YOU, so Much... I am so happy and now optimistic. Prayers will be with you and your future family... Thanks for making my day
Hi Lisa,
Your Dr. might be a little over-protective.(Or maybe he's concerned about any medicine you're on.) Most women who have lupus have had multiple children. He 2 risks of getting pregnant with lupus is the baby coming early or the baby having a tiny hole in their heart. (Or medication issues.) Each of my 2 daughters got one of those, but the hole in the heart wasn't discovered until she was 21 and she was a strong athlete before and after. The repair took 15 minutes and no surgery. Not a big deal. From what I've seen over the years, a large percentage of women lose the first pregnancy, whether they have lupus or not, and that's in the first 5 or 6 weeks. It's as if their body was practicing or didn't know what to do with a pregnancy. Then the subsequent pregnancies are fine.
Oh! By the way, I was one that felt so much better during pregnancy I wished I could e permanently pregnant of get injected with pregnancy hormone or something. You might feel better. Some feel the same, some feel worse. I just traded all my other symptoms for nausea.
Best wishes and congratulations on your pregnancy!!
Sheila
Haitianbarbie88,
That's fantastic that you have already made it through the first trimester. I know that everyone is different and my first was the best experience of my life, my 2nd was sick EVERY day. At the time of the 2nd I didn't know I had lupus, but all of the indicators were there. That said, I think number one thing to do is have a positive attitude. The mind can be so powerful. I am so pleased that you have a positive attitude and hope that you have a wonderful pregnancy.
Hugs,
DeAnne
haitianbarbie88 said:
This is my second pregnancy. My first after being diagnosed. So far I haven't had any problems. Im currently 13 weeks. Everyone is different so all you can do is take it day by day. Good luck :)
Terri I think you scared Lisa to death!
Lisa and Haitian Barbie, don't worry. Take it day by day like Whathappensinvegas said. The fears are usually worse than the reality. Any problems that come up will be taken care of by your Dr. or hospital. Best wishes!
SheilaW,
Had I known now what I know then, I would be terrified as well. The literature doesn't look good. But as we all know, no 2 of us react to, well, anything the same. And I would definitely have done things differently. I am so pleased that so many of us were able to conceive, but then many were not or were not able to carry to term. My 2nd was 2lb7oz when born. Brought him home at 4lbs4oz. I think what is important is to take care of mommy, keep a positive outlook, and realize that medical advances have come so VERY far that even if difficulties arise, an OB/GYN specializing in "high risk" should be able to handle it. Knowing Terri as we all do, I know it wasn't her intent to frighten Lisa, but just to let her know she may have to take special care.
We are strong women, who have a difficult disease. As my grandmother used to say "don't borrow trouble". I am so happy for the both of you, especially as you are aware that you may need to take special precautions. We will be here for both of you, no matter what.
XOXO to both of our mommies,
DeAnne
Thank you everyone for advise and kind words! This isn’t my first child but it’s my first after being diagnosed. But now that I look back a lot of things make sence now. My oldest was born with a hole in her heart and my other one was 4 weeks preterm. They are 8 and 9. I’ve been in an active flare for two years. But was just finally diagnosed after a bad visit to the ER this fall. Er doctor knew right away what my regular doctor took two years to figure out. Also, I had a miss carriage about a year and half ago at 6 weeks.
DeAnne, wow, 2 lbs, and boys have it much tougher as a preemie than girls. Mine was 3 lbs, brought her home at 4 lbs. Glad to learn your name. I keep a page on my computer where I write the person's nickname and their real name, or else I'll never remember them, except for those I get to know really well. Have a good evening.
whathappensinvegas said:
SheilaW,
My 2nd was 2lb7oz when born. Brought him home at 4lbs4oz.
DeAnne