View Full Version : Pregnancy
06-16-2007, 04:30 PM
Just a question for those more experienced than me. I've been seeing my rheumy since september. He still wont' officially diagnose me with lupus, he just keep saying, "some connective tissue disease". But I am on a low dose of prednisone, plaquenil 200mg 2x a day, and he has me taking 600mg motrin 3x a day. I've been really concerned about having babies and at first I was trying to convince my husband that we should get pregnant sooner rather than later, not knowing if my condition will get better or worse. Now ever since I've been on the plaquenil I've felt worse! and it's more muscle aches, than joint pain. It's made me even think, "could I even pick up a baby right now?" My husband just told me the other day that he's ready to start trying next month. I asked my rheumy when I could start having kids and he said not for another 2 or 3 years!!!! I asked why and he said just to see "how the disease will pan out". So just in case in 3 years I get worse he can tell me for sure no??? :?: He keeps telling me I'm so young and have plenty of time. Which to him probably makes sense that my biological clock isn't necessarily ticking right now, so why rush?
Not sure what to do.....I want to have a baby soooo badly.
Pretti in Pink
06-17-2007, 08:08 AM
this has been an issue for several of us on the forum. if you doctor is not giving you a definitive diagnosis, I would seek a second opinion and not tell them what this doctor has said to see what their diagnosis would be.
having been in your position, I would get the second opinion and pray about the situation then go from there because if you get pregnant it can be either very taxing on your body or you could be just fine but you need to be prepared and knowledgable about either way.
06-18-2007, 06:56 AM
I completely agree, get a second opinion from an obstetrician who is familiar with high risk pregnancies and familiar with Lupus. Insist that this obstetrician and your rheumatologist work together to help you have a healthy baby...not to prevent you from becoming pregnant!
Currently, 50 percent of all lupus pregnancies are completely normal, and 25 percent deliver normal babies prematurely. Fetal loss, due to spontaneous abortion (miscarriage), or death of the baby accounts for the remaining 25 percent. While not all of the problems of pregnancy with lupus have been solved, pregnancies are possible, and normal children are the rule, rather than the exception. Although the numbers above may not look good to you, they, in fact are. Basically, it is the rule that healthy babies are possible with Lupus mothers, rather than the exception. Pregnancy may not be easy, but many women who do not have lupus have had difficult pregnancies and delivered healthy babies. It is important to note that although many lupus pregnancies are completely normal, all lupus pregnancies should are considered "high risk." "High risk" is a term commonly used by obstetricians to indicate that solvable problems may occur and must be anticipated. Note the word "Solvable"
Most doctors agree that the best time to get pregnant is when you are at your healthiest. Many doctors prefer that their patients be in remission because women in remission have much less trouble than do women whose disease is active. Their babies do much better, and everyone worries less.
Doctors are concerned about pre-eclampsia in pregnant women who have Lupus. About 20 percent of women with lupus will have a sudden increase in blood pressure, protein in the urine, or both during pregnancy. This is called toxemia of pregnancy (or pre-eclampsia, or pregnancy-induced hypertension). It is a serious condition that requires immediate treatment and often immediate delivery of the baby. Serum complement and blood platelet counts may be abnormal in these cases. Since complement levels and blood platelet counts are abnormal anyway, due to Lupus Flares, it is sometimes difficult for doctors to know if the flare is causing the problem or not. When toxemia is treated immediately, there is usually little to no danger, but there is a high risk that the baby will die if it is not rapidly delivered. If toxemia is ignored, both the mother and the child could be in danger.
As your pregnancy progresses, your doctor will want to check the baby’s growth with sonograms (which are harmless). The doctor will also regularly check the baby’s heart beat. Abnormalities in either the baby’s growth or its heart beat may be the first signs of trouble that can be treated in order for you to deliver a healthy baby.
Many women are concerned about getting pregnant while taking Lupus medications. Necessary medications should not be discontinued. Most medications commonly taken by those with SLE are safe to use during pregnancy: prednisone, prednisolone, and probably methylprednisolone (Medrol) do not get through the placenta and are safe for the baby. But other medications, specifically dexamethasone (Decadrol, Hexadrol) and betamethasone (Celestone) do reach the baby and are used ONLY when it is necessary to treat the baby as well. For example, these medications might be used to help the lungs mature more rapidly if the baby will be premature. Also, small doses of aspirin are safe.
Most doctors now believe that azathioprine (Imuran) and hydroxychloroquine (Plaquenil) do not harm babies.
However, Cyclophosphamide (Cytoxan) and methotrexate are definitely harmful if taken during pregnancy. Doctors once felt that steroids should be given or increased after the baby is born to prevent "post-partum flare." Many now believe that this is unnecessary in most cases. For women recently on steroids, however, a "stress" steroid is usually given during labor to supplement what the mother cannot make herself.
Some of the concerns about babies born to mothers who have Lupus are:
* Premature birth is the greatest danger to the baby. Births before 36 weeks are considered premature.
* About 50% of lupus pregnancies end before 40 weeks (9 months), usually because of the complications previously discussed.
* Babies born after 30 weeks, or weighing more than 3 pounds, usually do well and grow normally.
* Premature babies may have difficulty breathing, may develop jaundice, and may become anemic. In modern neonatal units, these problems can be easily treated.
* Even babies as small as 1 pound, 4 ounces have survived and have been healthy in every way; but the outcome is uncertain for babies of this size (Lupus or Not).
* There is one congenital abnormality that occurs only to babies of lupus mothers (neonatal lupus, described below).
* There is no unusual frequency of mental retardation in babies of lupus mothers.
About 33% of people with lupus have an antibody known as the anti-Ro, or anti-SSA, antibody. About 10% of women with anti-Ro antibodies-about 3% of all women with lupus-will have a baby with a syndrome known as "neonatal lupus."
Neonatal lupus is not SLE. Neonatal lupus consists of a transient rash, transient blood count abnormalities and sometimes a special type of heart beat abnormality. If the heart beat abnormality occurs, which is very rare, it is treatable but it is permanent.
For babies with neonatal lupus who do not have the heart problem, there is no trace of the disease by three-six months of age, and it does not recur. Most babies with the heart beat abnormality problem grow normally, but some need pacemakers. If a mother has had one child with neonatal lupus, there is about a 25 percent chance of having another child with the same problem. The chance that the child will develop systemic lupus erythematosus later in life is very, very low.
Very premature babies, babies showing signs of stress, babies of mothers with low platelets, and babies of mothers who are very ill are almost always delivered by Caesarian section. This is both the safest and fastest method of delivery in these cases. Usually the decision about type of delivery is not made in advance because the specific circumstances at the time of delivery are the determining factors.
I give you all of this information so that you, your husband, and your doctors can make an informed decision, which does not mean that you cannot have a child. You can make an informed decision about when you want to get pregnant and how you are going to care for yourself during your pregnancy to insure a healthy pregnancy and a healthy baby.
I wish you the very best and hope that you and your husband are able to make a decision that is best for both of you!
Peace and Blessings
06-18-2007, 10:55 PM
I have to post my experience with this. Sorry that it's a bit long.
I have 4 children. I've had lupus since puberty but wasn't diagnosed until after my first baby was born. (The hormone surges that happen after birth made the Dr.'s pay attention.) I went on to have 3 more with relatively no problem. I was terribly sick the whole 10 months of pregnancy and had horrible deliveries, but other than that the lupus stayed pretty quiet. I had all 4 kids within a 5 year period. After I quit nursing the last one the lupus started to progress over a period of 8 years or so. (slowly) Lucky for me by the time I wasn't able to hold babies anymore because of the muscle deterioration and the arthritic symptoms, my babies were older and more on their own. By the time I got really bad my youngest was about 10 and they were all able to help around the house, make dinner when I didn't feel good and were basically pretty independent. I ended up in the hospital and nearly died and had to go on massive amounts of chemo that put me into early menopause. I couldn't have kids now even if I wanted to. I'm so glad I had them while I was young. Before my disease progressed. Before my body was so so tanked up on toxins. Before it was too late. I don't know what I would do without my kids.
My oldest is almost 19 now and has a 4 year scholarship to a great college in Boston. My other three (13,15,16) are in high school (this fall) in the gifted program. All of them exceptionally smart, bright, happy, well adjusted, HEALTHY, kids.
I don't know how bad your disease is or anything so I couldn't possibly give you an opinion on what you should do. Plus everyone is different that has lupus. However I can tell you no one knows what the future will be. They told me I had "mild lupus" and it would never be a problem. They continued to tell me that right up until a month before the put me in ICU and told me that there wasn't anything more they could do for me. You just never can tell.
I will say, that I think you should do what you think is best you. Don't let anyone tell you how to live your life. If I had listened to them, I wouldn't have had my other three kids. I wouldn't still be jumping out of air planes on the weekends. I would probably be dead because they told me I should have died. I just didn't feel like doing that though! I had kids to live for! Grand kids to look forward to! Things to do, places to go, people to meet!
You do what you gotta do in order to do what you wanna do. It's not easy. Especially with lupus, but it can be done. Sometimes those things that we have to work the hardest for are the best things though. :wink:
06-20-2007, 10:54 PM
I'm going through the same with my rheumie. I managed to get a "you can start in 3 months" as he is wanting the plaquenil to kick in first. If you are on the drugs though, and they are working as well as they are going to- isn't it better to do it sooner rather then later???
Saysusie: Most doctors now believe that azathioprine (Imuran) and hydroxychloroquine (Plaquenil) do not harm babies.
He also said that the "A....." drug- (I missed the name- but he said it was a cancer drug- i'm assuiming it is Imuran after this)- does pass though the placenta- but that the baby can't metabolise it into its active form. He said the plaquenil is generally considered safe now. I know that all doctors are differnet and generally *all* are conservitive about these things.
We were actually trying when I was diagnosed- now our plans are put on end and it upsets me to no end :cry: . At least I have a time frame now. The last appointment he just said "no"- no time frame, no nothing- just stop trying.
The better you are when getting pregnant, the less complications there will be- as I know Saysusie said..
07-02-2007, 06:53 PM
Put it in the hands of the Lord. I realize that everyone is different but you never know what your body is going to do. I have had 4 children and during each pregnancy I did great. I didn't take any meds. During pregnancy your body naturally produces prednisone... Yes it is a risk. My doctors tried to scare me into abortions by telling me about "heart block" and other scary medical terms...but I have 4 healthy babies. For me it was a risk I was willing to take. And while you may hurt now, it may get better. For me having kids kept me going. Otherwise I'd be in the bed feeling sorry for myself. Having kids is wonderful, you just have to ask yourself does happiness out wiegh risk?
My daughter in law has lupus, and is in remission. My concern is that she has had 2 miscarriages within one year. Once at 6 weeks and the last time she was 10 weeks pregnant. Her doctor doesnt seem to think its because of her history with lupus, but I'm not so sure. She is 35 years old and this is the first time she has ever been pregnant. Does anyone have any opinions or advice they could give me about this?
08-04-2007, 06:55 AM
Women with lupus have a higher rate of miscarriage and premature births compared with the general population. In addition, women who have antiphospholipid antibodies are at a greater risk of miscarriage in the second trimester because of their increased risk of blood clotting in the placenta. Lupus patients with a history of kidney disease have a higher risk of preeclampsia (hypertension with a buildup of excess watery fluid in cells or tissues of the body).
Like the disease itself, everyone's "remission" is different. Most doctors prefer that women be in a state of remission before they attempt to become pregnant. Some patients in remission continue to have antiphospholipid antibodies which affects their pregnancies.
Lupus patients, in or out of remission, are still considered high risk pregnancies. However, it is possible to have a successful pregnancy and a healthy child. Hopefully your daughter will not give up quite yet!
Peace and Blessings
Thank you (((Saysusie))) for your helpful information.
I sure hope she can have a successful pregnancy. I know she's sure not going to give up. We all want a baby so much.
Thank you for your thoughts and blessings.
08-08-2007, 08:44 PM
I just want to add to this discussion that being a woman in a certain age category adds to it the pressure sometimes to have children. People constantly ask you if you have kids, when you are having kids, or why you don't have kids. This is a sensitive issue to people that are having to make difficult medical decisions or having difficulty in getting/holding a pregnancy because of Lupus. Remember the inadvertant pressure society and family can have.
Having children biologically is a wonderful opportunity women have been given. But, women are still women even if they don't/can't have children biologically.
Thinking of you all in these difficult life decisions.
:D Hi everyone!
I have some good news! My daughter-in-law is pregnant again and everything seems to be going well this time! She is about 3 months along, and if all goes well the baby will be born in April. The doctor seems to think everything is going to be ok! :D
Please say some prayers that everything goes well, we're keeping our fingers crossed that her lupus doesnt flare up. So far so good. :angel:
10-08-2007, 05:08 PM
I know that you've had all kinds of input from so many. It's not an easy decision to make. I think it's something you and your sweetheart will need to discuss, perhaps he can go with you to your next doctor's appointment. Have questions written down, and be prepared that you may not hear what you want.....but then again, I think lupusleaper had some very wise things to share with you.
I don't know if you believe in prayer, but I've learned that when life gets too much for me to bare sometimes, I kneel down and pray to my Heavenly Father that He will provide for me. Only you know what your family circumstances are, what kind of support system do you have around you, doctors - family - friends - community - church, etc. Lupus comes to us all in various stages - some not so serious and others very serious. I do believe that you have a heart to have children; pray about it - discuss it with your family, doctor and friends.
I wish you the best, and I hope you'll keep us posted. You have so many of us praying for you and wishing you well.
Take care of yourself, and thanks for sharing.
10-09-2007, 01:16 PM
Hi Chickadee :lol:
I want to ditto everything that Browneyed girl said and to offer my congratualtions to you, your daughter-in-law and your son! I am so happy for all of you.
Peace and Blessings
Pretti in Pink
10-10-2007, 05:08 PM
I will keep your daughter in law and the rest of your family in my prayers.
10-10-2007, 11:14 PM
Rena, congratulations to u, ur son and daughter in law, U and your family will be in my prayers constantly!
I totally understand what u are going thru, my hubby and I are also battling with the decision on whether to try to have a baby, we've had a bad experience before, but i will rather not share this with u right now, what we need is to be positive and think positively and i guess believe and trust in GOD,
I trully hope that things become easier for u and that you will have good news soon, as will I, I hope!
All u guys are always in my prayers!
11-28-2007, 10:26 AM
My wife has lupus with stage 5 kidney disease. We were cotemplating having kids now or waiting till she got a transplant.
We went through a surrogacy program earlier this year (even with her kidney disease ) and last month we were blessed with our son.
If you are open to surrogacy and would like more information and guidance, we can help you through the process and provide you more information.
We thank God for our little one, and hope we can help others in our situation.
Please feel free to PM anytime.
Wish everyone the best...