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Thread: trying to conceive and newly diagnosed lupus

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    Default trying to conceive and newly diagnosed lupus

    Hi,
    Basically my hubby and I have been trying for quite a while for a baby. Then I get the lupus diagnosis after a big flare. Now (over a month after that initial flare- although had some smaller ones) most symptoms are gone appart from a sore chest and some skin sensitivty. The rheumy said not to try to conceive right now- he was quite adament and gave me articles on birth control choices.

    From what I am reading on this article here here the outcomes for pregnancys with lupus patients when it is not planned is much worse. But I feel fine and the plaquinel wouldn't be working yet so it isn't that. I am off all the prednisone and I still feel fine. Why do I have to wait?? Is it really that bad?? Am I at risk of sudden flaring in these first few years? I would have had it for a while and I have been reletively fine before now (just low level "indicators" that helped with the diagnosis- I didn't even mention them to my GP).

    This is probably the one thing I am having trouble coming to terms with. WHY??????

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    There are very many things to consider when deciding to have a baby with SLE. Your doctor, more than likely, wants to wait until there are very few occurences that could complicate your pregnancy. All SLE pregnancies are considered "High Risk" pregnancies.
    It is always unwise to take any unnecessary medications during pregnancy. However, necessary medications should not be discontinued.
    Most medications commonly taken by those with SLE do not get through the placenta and are safe for the baby. Some of those medications are:
    prednisone, prednisolone, and probably methylprednisolone (Medrol).
    But other medications used in SLE 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. Some of those medications are: dexamethasone (Decadrol, Hexadrol), and betamethasone (Celestone). A small dose of aspirin is safe and is often used to protect against toxemia.
    It is still suggested that you do not become pregnant if you are using any of the following drugs: azathioprine (Imuran) and hydroxychloroquine (Plaquenil), and Cyclophosphamide (Cytoxan) is definitely harmful if it is taken during the first three months of pregnancy.
    A few doctors feel that all pregnant women with lupus should take small doses of prednisone (a corticosteroid) to prevent early abortion. However, there are no confirmed data that this is necessary. Some doctors feel that steroids should be given or increased after the baby is born to prevent a "post-partum flare." Again, there is no evidence that this is necessary either. For women on steroids, a "stress" steroid is usually given during labor to supplement what the mother cannot make herself.

    Doctors prefer that women be in remission before getting pregnant because they have much less trouble than do women who get pregnant when the disease is active. Their babies do much better, and everyone worries less. Good health rules are essential: Doctors and researchers have not solved all of the problems of pregnancy with lupus, but pregnancies are possible, and normal children are the rule rather than the exception. However, About 33% of women with lupus have antibodies that interfere with the function of the placenta. These antibodies are called:
    antiphospholipid antibodies, the lupus anticoagulant, or anti-cardiolipin antibodies. These antibodies may cause blood clots, including blood clots in the placenta, that prevent the placenta from growing and functioning normally. Blood clots in the placenta usually occur during the second trimester. Since the placenta is the passageway for nourishment from the mother to the baby, this condition will slow the baby's growth. However, the baby can be delivered at this time and will be normal if it has developed enough. Treatments for pregnant women with lupus who have these antibodies are still being tested. Heparin is currently recommended. Some doctors add a small dose of (baby) aspirin. With the use of such medications, about 80% of the women will not miscarry.
    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 above stated complications. Babies born after 30 weeks, or weighing more than 3 pounds, usually do well and grow normally. Premature babies may have these problems, but in today's modern neonatal units, they 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 and not promised for babies of this size.

    NEONATAL LUPUS
    There is one congenital abnormality that occurs only to babies of lupus mothers: neonatal lupus. 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, 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).
    Neonatal lupus is the only type of congenital abnormality found in children of mothers with lupus. For babies with neonatal lupus who do not have the heart problem, there is no trace of the disease by 3-6 months of age, and it does not recur. Even babies with the heart beat abnormality problem grow normally. If a mother has had one child with neonatal lupus, there is about a 25% chance of having another child with the same problem.
    There is only a small chance that the child will develop systemic lupus erythematosus later in life.

    So, while there are many things to consider, a successful pregnancy is much more likely today than it was ten years ago. But, please make sure that you and your doctor's agree that the time is right for you!

    I wish you the very best!
    Peace and Blessings
    Saysusie

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    I guess my main thought is that I feel fine. If I had serious kidney involvement or was in the middle of a flare I would be able to accept the "waiting". I had a flare and am now in remission. How will staying on medications for ages going to permanintly change things when I have to go off them for pregnany anyway??

    I haven't done the tests for antiphophosholipid AB, lupus anticoagulant or anticardiolipin ABs yet although I am 95% sure that they will be positive. But that isn't going to change by waiting!

    I have an appointment in 3-4 weeks time again. I guess I will ask him then about trying. Hopefully he will give me the go-ahead

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    You would not have to go off of all of your medications in order to become pregnant. As I said earlier, most medications normally used will not get through the placenta, so it is usually best to continue taking those medications if your doctor advises you to do so. Also, as I mentioned earlier, some medications may be given to you in order to protect the baby.
    Yes, it is wise to address all of the issues and ask all of these questions with your doctor. Ask him to explain to you what his reasons are for wanting you to wait. I just outlined a number of reasons that might make a doctor advise against pregnancy. You will need to know exactly what your doctor's concerns are. The information that I provided may help you to understand his reasons and might help you to make a more informed decision with him.

    Most importantly, pregnancy and normal healthy births are now the norm, rather than the excetpion, with women who have Lupus when they time the pregnancy carefully and when they follow their doctor's instructions and are monitored carefully throughout the pregnancy.

    I wish you the very best!!
    Peace and Blessings
    Saysusie

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    Saysusie,
    Are you a doctor or self educated on Lupus? You seem to know a lot (I'm very impressed).

    I had the same question, but my rheumatologist has told me that I needed to wait three months after coming off the prednisone to start trying (This is because of a low platelet count, not because of the prednisone effects). She also told me that staying on the Plaquenil is fine during pregnancy because the negative pregnancy affects have been shown primarily in lab animals, not in humans. (This is similar to fenergan (sp?) which is commonly given for nausea during pregnancy. It is in the same "pregnancy category" as plaquenil, but is given to pregnant women all the time because there have not been any human trials and the only negative affects on pregnancy have been seen in animals. Doctors have been giving it to pregnant women for years with no side affects, but without the trial data to back this up, it will not be removed from the "not recommended" category.)

    Does this sound right? I'm seriously asking because, my rheumatologist also never told me I had to have a vision field test every six months on the plaquenil and in general just seems completely uninterested in anything except my insurance paying her.

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    The length of the waiting period before becoming pregnant will probably depend upon whether or not you have any end-organ involvement secondary to your lupus (i.e. renal, hepatic, etc.). If you do not have any significant impairment, then the waiting period may not be as long as it would be if you have had impairment.
    Plaquenil has been used with pregnant women, but there are reported abnormalities that seem related to plaquenil use -primarily retinal and neurodevelopmental abnormalities. Most doctors will suggest that using plaquenil drug during pregnancy should be avoided except in the suppression or treatment of symptoms when, in the judgment of the physician, the benefit outweighs the possible hazard. As you stated, radioactively-tagged chloroquine administered intravenously to pregnant, pigmented CBA mice passed rapidly across the placenta. It accumulated selectively in the melanin structures of the fetal eyes and was retained in the ocular tissues of the newborn mice for five months after the drug had been eliminated from the rest of the body.

    I cannot understand why your doctor would not advise you of the possible retinal damage that can be caused by plaquenil. Irreversible retinal sometimes occurs in patients who have received long-term or high-doses of plaquenil. Retinopathy has been reported to be dose-related. If you doctor intends for you to use Plaquenil for a prolonged period of time, it is imperative that he/she schedule you for periodic (every three months) ophthalmologic examinations (including visual acuity, expert slit-lamp, funduscopic, and visual field tests). If these tests have not been scheduled, you should contact your doctor and insist that he/she schedule them for you.
    If the tests find that there is any indication of abnormality in the visual acuity, visual field, or retinal macular areas (such as pigmentary changes, loss of foveal reflex), or any visual symptoms (such as light flashes and streaks) the drug should be discontinued immediately and you should then be closely observed for possible progression of these changes because retinal changes (and visual disturbances) may continue to progress even after you stop taking Plaquenil.
    All patients on long-term therapy with plaquenil should be questioned and examined periodically, including the testing of knee and ankle reflexes, to detect any evidence of muscular weakness. If weakness occurs, again, the drug should be discontinued.
    In the treatment of Lupus, if improvement (such as reduced joint swelling, increased mobility) does not occur within six months, the drug should be discontinued. Anti-malarials, such as plaquenil, appear to interfere with immune cellular function. The antimalarials are weak bases and can alter the pH inside the cell, thus interfering with intracellular enzyme activity that depends on a more acidic micro environment. When this occurs, there is an anti-inflammatory effect. Many chemicals that participate in the inflammatory cascade are altered, and blood is thinned due to alterations in platelet aggregation.
    Thorough studies on the use of anti-malarials in pregnant women have not been done. The dose of antimalarials is a bit higher for Lupus than for treating malaria. Many pregnant women who have lupus with anti-malarials, have been treated without adverse effects on the fetus. More research is needed and you should understand as much as you can about Plaquenil so that you can make an informed decision with your doctor about using it (or not) during pregnancy.

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    Wow, Saysusie! Thank you so much for the information. I am printing this out and making a list of additional questions for my rheumy. My last appointment with her is tomorrow and I begin seeing a new rheumy in July. I have an eye doctor appointment again next week, so I'll ask him about the other tests (he is already doing a vision field test). Again, thank you.
    AB

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    How did your appointment go???


    Saysusie

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    Saysusie -

    I wasn't sure if you meant that question for me or Nekhbet. My answer is the rheumatology appointment was a nightmare. She actually became very angry at the end of the appointment when I told her I was leaving. She only spent about five minutes with me and then dismissed all of my questions. So I told her pleasantly that I was going to try another rheumatologist closer to my Hematologist and my house. She was furious. So I told her that I was concerned about the medication side effects that she had failed to mention at which point she lied and said she had told me everything. Well my husband was with me at the vast majority of my appointments (all except the last two) and we've both taken copious notes and we agree that she never mentioned anything about possible vision/eye health side effects and she encourage us to try plaquenil as the "only safe medication to be taken while pregnant"

    So that is that. I am anxious to hear how Nekhbet's appointment went.

    Nekhbet, I know you said 3-4 weeks. Have you had it yet?
    AB

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    Wow.. Have been absent for the last while- summary story is....

    After 16 months trying to conceive I was diagnosed with lupus and told not to get pregnant.

    So first thing I do is get pregnant. I was absolutely :shock: and worried. After I got over that I was over the moon though! It was a (sort of) failure of B/C (I think I was *wanting* it to fail)- and after all this time trying- we get pregnant when we are not trying.

    Emergancy phone calls with GP (can't get a hold of rheumie) and told to go off plaquenil and take prednisone if I flare. I leave messages with my rheumie and my GP talks to him also the next day. He confirms plan.

    A week later I start flaring (I tend to flare in my luteal phase- it got worse again when I got pregnant - but was still ok). I decide to take prednisone one night as even though it was minor and *I* was ok- I was worried about effects on the baby.

    Next day I start miscarrying :cry: - another week of mucking around getting my test results and it is confirmed. The baby has gone :cry: .

    I am going a lot better then I was- the miscarriage was quite painful and my hormones were everywhere so I was *really* emotional.

    Then today I had my rheumie appointment:

    One positive is that I lost 2 kilos (4.4 pounds) since last month!!

    The basic points of the appointment..

    1. I told him that I am no longer pregnant

    2. He told me off for getting pregnant in the first place and he didn't say it as such but he is "releived" that I am no longer pregnant . Apparently when my GP told him he said something allong the lines of "oh crap". I can't remember the actual words he said.. He also asked if my GP said he was glad that I m/c :shock: :x - (that was reflecting his feelings not my GPs)

    3. He said that the miscarriage was caused by the lupus- an overactive immune system rejected what is essentially a "parasite" (which sounds shocking but I'm ok with stating it like that as biologically it is). I do think that is a stretch given how common early m/c is. If I had them repeatably I would change my mind.

    4. He wants me not to get pregnant for at least 3 months after the m/c-- I made him commit to a number .

    5. He said I would "know" when the meds started working as all the "little things" will go away (my chest hurting, my arthritis and skin burning). He wants them 100% first.

    6. He wants me to stay on the plaquenil when I get pregnant next time . I may go on prednisone (10-15mg/day) or something begining with *a* which is an anti-cancer drug. Apparently it can cross the placenta but can't be metabolised into it's active form by the baby.

    Generally plaquenil isn't advised- but my rheumie says it is ok. He is actually saying it is better for both baby and me to take it- as the consequences of the lupus are worse.

    My doctor didn't say anything about the vision tests- but I read about it. I still haven't made an appointment for a baseline yet though- and it has been 6 weeks...

    Since the rheumie wanted my on the plaquenil anyway when pregnant I was really hoping for the go-ahead as I don't need to get stable and go off it. grrr. After the pregnancy and miscarriage it just made me realise how much I wanted it. But, I guess we are waiting again...

    I'm posting another seperate question about my diagnosis. I was that taken aback by the appointment I didn't ask ops: or think about it. It does reflect on this question though...

    Librarian- I'm sorry for your crappy appointment.
    Saysusie- thanks again- your comments and help are always fantastic and always appreciated...

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