active lupus and pregnancy

really sorry to post on here but i could really use advice , i was in remission 2 years an had a flare up this year and everything seems to be going wrong, my Rhemy told me for years not to get preg while illness is active so have been trying to get in remission but no luck, he's now left and I'm under someone else till they employ, went to see the new one on Friday to ask what's the next step an he basically told me crack away with trying lupus is same as RA i was told and gets better in pregnancy see you in 6 months if u fall preg sooner contact me and go to doctors to see a specialist midwife, I'm a little thrown as this is opposite to what I've been told for the last 3 years, i then goggled it today for more info and apparently if its active its a danger to both me and child eg clots, miscarriage pre eclampsia and so on, he didnt inform me how active my disease was as noone will give me my blood results over phone anymore so haven't a clue where I am or what I wed to look for to see if I'm in remission or not, i dont feel i am due to symptoms but i am not in any unbearable pain, could someone please let me know have they gone in to pregnancy with active lupus, i really need advice as i cant even get a second opinion on this, sorry to babble on xxxx

10 Replies

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  • First of all you should ask for a referal to an obstetrician specialising in difficult pregnancies (lupus, diabetes etc). That's what happened to me. I told my GP I was thinking of having a baby and 3 weeks later I saw a specialist. She did all the blood tests, explained the risks to the baby and myself and the medicines I was going to take/ or stop taking.

    Are you taking any drugs at the moment?

    Generally it is thought that active disease can increase the risk of miscarriage, lupus nephritis, eclampsia etc. But in many cases the pregnancy can calm lupus becasue it's generally an 'immunosupressed state'. Unfortunately you cannot predict what is going to happen so you need to have an experienced doctor looking after you and the baby...

  • Hi dear, my lupus is mild, but I do have flares and remission periods as well. When I had the pregnancy conversation with my doctor he said that pregnancy during a flare is prohibitive for both your good and the child's as well. Many things can happen while being pregnant and in flare. What my doctor advised was to be in remission for at least 6 months and with the minimum dosage of prednisolone in order to start trying and get pregnant. You r body must be as healthy as possible in order to take care your child and protect you as well from a potential (worse than ever) flare.

    Pregnancy and Lupus flare cannot go together hon..

    Take care xx

  • Hi both thanks for this, my lupus is really mild compared to half the people out there, i have the odd days of sore joints but my only real symptoms at present is tiredness (but who isnt) headaches and i catch alot of colds nothing really bad, my kidneys have an involvement but have been given the ok by the renal doctor, my only concern is to me and the baby, i understand you cant predict how its going to go but i cant at all risk my life as i have a 4 year to consider in this all, i am on azarthroprine 150mg (50mg tablets x 3 once a day) asprin and lanzorprozol.

  • I have had 2 kids & have lupus, Sjogrens, APS, RA, Raynauds (I could go on!) & both were unplanned. Yes, I had 2 come off the warfarin pretty damn quick but having lupus, they will monitor u very closely. Pregnancy CAN cause u 2 go in2 flare, however, my lupus is quite severe & I felt better than I had in ages for months after having my kids. U're new Consultant obviously doesn't know his arse from his elbow when it comes 2 pregnancy & lupus. We're all different & what goes 4 1, doesn't always go 4 the other. I'd be more inclined 2 check up on u're meds.

  • thank you so much for your reply, how did you find pregnancy? the thing is they dont know if i had it before i had my son so i could be fine like you said no two people are the same, my worry is that i dont know how active my disease is and i keep having very low white blood cells which they say is ok. my meds have been the same for 3 years and i keep saying i need something to gt in remission but noone listens.

  • this MAY be as 'in remission' as u're gonna get from now on, no 1 ever knows with lupus :0/ Apart from worrying about all the 'if' & 'buts', my pregnancies went as most normal 1's did, but I DID have my kids both early, my first was 4 weeks early & my 2nd was 5 1/2 weeks early. Obviously the tiredness gets much worse but I coped ;0)

  • thats exactly what im thinking, and i think maybe a good time as i dont feel ill just tired and achy but its hard to get past whether its all disease or just the way of life sometimes and i feel once you have a problem its oh it must be the lupus rather than looking in to the cause.

    Ye i was told about the giving birth early thats not a prob, and tiredness is a killer i get that but it is for everyone with a new born its the part or parcel of having a child. xxx

  • Good luck with whatever u decide :0)

  • Totally agree with Sher78. If you are even thinking about having babies, rather than thinking about feeling ill and in pain, you are probably doing pretty well Lupus-wise.

    I waited until I was nearly 40 to have my two boys and then I faced another set of worries and tests. I was glad that before I got pregnant I went to a Lupus Clinic (new then) and was monitored throughout. The staff had seen far more serious cases than mine so it gave me confidence. All the scans etc played havoc with working full-time and having an unsympathetic boss but it was obviously worth it. After tests, I wasn't expected to have early deliveries - both went full term and were good weights - eldest was 8lb 10oz - ouch!! I think I would have worried more if I was on lots of medication but I only took Plaquenil. No Lupus-related pregnancy problems. I was tired (fell asleep at my desk once) but I was doing a hectic 3-hour commute and working long hours. Thinking about it, most fully fit people wouldn't have coped. Perhaps I was lucky not having a flare but you just never know, that's life.

  • Thats exactly it, i don't feel in pain, i have slight joint pain and headaches, the worst part of my illness is im catching alot of colds etc but i can live with that, as for the pregnancy im not worried too much about pain tiredness etc as i know that can be eased with meds, my worry is the risk to me and possibly the baby while i am active, and hearing everyone's stories is reassuring me alot.

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