is it true?

[mum to be with lupus]

Hi this is my first message on this site!
:worried: :worried: :worried:
I am 21 weeks pregnant and have lupus. i found out last week at my 20 week check up that mums with lupus have small babies is this true and if so how much smaller are they once they are born, i have got 3 extra growth scans booked for future weeks...plus extra blood screening. my husband and are quite worried. Any information any body is able to give me will be greatfully received.
I have had to come off all medications which i am finkding really hard to cope with the pain.
I shall look forward to hearing from anyone that is or has been in the same situation as i currently am.
Dee

[Clare.T]

Welcome to the forum

Low birth weight and prematurity are among the higher risks among lupus mothers, but it's not true for all. There's not much that's always true for everybody in lupus.

There are several drugs that can be taken in pregnancy so I wonder why you aren't on any. It's best not to be on any of course, but sometimes it's better for the welfare of the baby and mother to reduce flares and minimise the risks of lupus related complications. The drugs that can be taken are Plaquenil, Prednisone and Imuran.

You need to know if you have the anti -Ro antibodies and anti phospholipid antibodies.

Most women with SLE should be in the care of a high risk pregnancy specialist

All the best -please let us know how you get along and I hope your doctors will be able to reassure you - let them know your worries

Clare

[ROSST]

Hi, I've got Lupus, APS, Raynauds and Rheuamtiod.

I've had two children, my first was a small birthweight. I had loads of growth scans and check ups, so I was obviously concerned as you are. Yes my son was small but I got to 38 weeks and he didn't really have any problems, just a bit slow to feed. My daughter on the other hand had normal growth all through my pregnancy and was a good 2 pounds heavier at birth.

So, no two pregnancies are the same - try not to worry.

on another note - if your struggling without your meds (I did) make sure they put you on low dose steriods after the birth - it should help prevent a lupus flare.

Good luck - let us know how your getting on.
Tracey

[luppiejodi]

Hi, I have got a seven month old and a three year old both of whilst having SLE. I too had four weekly scans for growth - which are routine as having Lupus puts you at a higher risk. I know there is a chance of complications but they say as long as you are well looked after and have good checks you should be ok. I was on plaquinil all the way through with both and 75mg of asprin daily. I was induced a week early as my consultant doesn't like you to go to 40 weeks having Lupus. Had normal deliveries with both. First was 8lb. Second was 8lb 14. Try not to worry - I know it is a stressful time being pregnant with Lupus but I do know quite a few luppies who have had children. The best thing is try to rest and relax. And make sure you visit your Midwife in between hospital appointments. I was at hospital every 4 weeks and midwife every 4 weeks so seen someone every 2 weeks. Hope you are taking care anyway and feel free to Email me if you like.
Jodi

[Maia]

It's not common to take a lupus mom-to-be off all her meds anymore especially **during** a pregnancy. You may want to get a second opinion on that matter if at all possible.

Statistics are that 50% of babies born to lupus moms are full term and full weight babies, and 25% are premature or suffer from IUGR (Intra-Uterine Growth Restriction) but these babies do not suffer any long term problems so it's not too big of a deal. This is the reason for the extra scans however - & to check on the functioning of the placenta as it can "give out" sooner in a lupus mom than normal. I had 3 scans as well and my baby was born at a hefty 8 plus pounds!

Do your best to remain positive and just enjoy the pregnancy as much as possible. It's such a remarkable thing to experience, isn't it? Let us know how things go and please post when the baby arrives too!

[LouG]

Just to let you know that I have SLE and had a baby girl 10 weeks ago and she weighed 8lbs 15.5ons and she was born at 39 weeks!! I never managed to come off all my meds and was on prednisolone, azathiroprine, heprin and asprin throughout.

I had growth scans (approx 1 a month) to ensure she was getting enough oxygen and growing well. I was induced a week early (because of my sle) but I had to have a c-section after the labour never progressed.

She is totally healthy and amazing! Good luck and I hope all goes well for you and your family.

Kind Regards

Louise

[peonyprincess]

I have had four children and they are all perfectly normal, with the exception of the teenager who I am willing to loan out:lol: .

My oldest daughter weighed 6lbs 8ozs
My twins were born early (no surprise) and both weighed 5 lbs, 1 ozs
My youngest daughter weighed 7 lbs 8ozs.

To date, they have all progressed nicely and have had to ill side effects in growth or intelligence (except teenager :lol: ) of anything that I can attribute to my having Lupus.

When I was pregnant, I felt great. I might get some basic aches and pains, but nothing that a Tylenol or Advil couldn't handle.

I hope you have an uneventful prenancy!


Nancy

[Mrs H]

Hi there,

I am 11 weeks pregnant with Lupus. I have seen my consultants (both baby doctor and lupus doctor). I am still on the 1mg of pred. that I was on before and and now on low dose asprin.

I chatted with my doctors about risks and the main issue is the baby may have a low birth weight (ie is skinny). It will be the correct size etc and will catch up as soon as it gets out and starts feeding. My doctor also said she has had lupus patients with chubby (in a normal way!) babies.

There are so many scary stories out there, as long as you are well looked after ( I am being scanned once a month at the moment and may go up) and people explain things to you, then you are in good hands.

Try to relax and enjoy this special time.

Mrs H

[LolaLola]

Even with at that time undiagnosed Lupus and APS I managed to have two premmie babies who although very early were a good size for their dates.
They are both normal size teens now. In fact, the eldest who was less than 2lbs is now moaning at being 13 stone with size 11 feet. !!!

Please don't let worry spoil your pregnancy. I am glad you have been diagnosed at least you will be properly looked after.
x Lola

[Raglet]

don't worry, mine was 8.12, a delightful, chubby little monkey.

Think positive, if you start thinking about everything that may never happen you will drive yourself mad.

good luck with your pg, and all the best for a healthy babe

cheers

raglet

[mum to be with lupus]

Hi sorry taken a while to reply, i have jus come out of hospital after unable to keep anything down.

I would like to thank every one that has taken the time to reply to my post, i don't seem as worried as i did...

once again i thank you all... i will keep you informed as to my progress..
Dee.. mum to be with lupus

[Clare.T]

Hi Dee
I'm sorry about the hospitalisation and hope you feel better very soon if not already.
I'm glad you are less worried. Take it day by day & rest up - so much is beyond our control even when we are healthy.

My grand daughter weighed under 2.5 lbs, which was very small even for 32 weeks. It was IUGR for not apparent reason but she was in excellent condition, a 'feeder and grower' as they say. She is 7 now and in fine shape.

Please let us know how you get on and all the luck in the world

:)
Clare

[Judy Seagrove]

Hello

My third daughter was born at 39 weeks, 4lbs 11 oz. - at this time we were both diagnosed with Lupus. She had a facial rash which disappeared at 6 months. She is 12 now and extremely healthy and is one of the biggest girls in her class. I am doing fine as well, with very little medical intervention. I did not know I had Lupus and did not take any medication - but looking back, I really think it would of helped. I am on the camp of some other posts - get a 2nd opinion. With all tha said, try not to worry - you will be fine and so will your baby.

Judy

[emlupus]

I have a 3 month old little girl and my antenatal care was the same as yours. They told be she was going to be small but in the end weighed 7lbs, so I think we did alright!

I took Plaquenil until 28 days before birth, am now drug free and am sucessfully breastfeeding. After a wonderful WBC of 6.2 when I left hospital I am now back to 3.0 so feeling a bit tired but it is all worth it.

My advice is don't worry too much, lots of TLC and plenty of rest. When your little one arrives take ALL offers of help, do NOT do ANY housework (great to watch the mother-in-law doing your hoovering!) and sleep when babe does. When you are in hospital after the birth make sure the midwives know about your condition. In one shift hand-over no-one mentioned it, so I got forgotten about :( Also try your luck at getting one of the side rooms so you can rest better :)

Good Luck with the preg!

Riggers

[Clare.T]

Welcome to the forum Riggers and congratulation on the safe arrival of your daughter. I bet she's adorable.

I hope you continue keeping well.

:)

Clare

[DeennaDLS]

I know what it is like to be so scared during pregnancy! My doctor kept me on 5mg of prednisone a day throughout my pregancy. In my 33rd week I started losing amniotic fluid and had an amniocentsis. I had to be induced at 34 weeks. She was small, 4 pounds, and had jaundice, but other than that she was healthy. We went home from the hospital in 3 days at 4 pounds, 2 ounces. So even if the baby is born small, there is still a big chance that he/she will be fine. TRY not to stress too much and be positive - that's what got me through my entire pregnancy!

[ping]

It bothers me that doctors use 'small' to describe a prognosis. 'Small' does not mean unhealthy. I have SLE. I have a three month old. During my whole pregnancy, I kept hearing 'small' or 'low normal', normal, but on the small side. Whatever. I started out 5"4' and 112lbs. My mom is 5"2' and about 100lbs. My grandma was even skinnier. I had a 5 lb. 9 oz very healthy baby at 37 weeks and honestly that was big enough for me :)
I work in a level 3 NICU (neonatal intensive care unit). My concern was prematurity and IUGR (small and not growing properly) and pre-eclampsia (high blood pressure which could cause seizures). So when I keep hearing 'small' it stressed me out. I just had to keep in mind that my baby was growing properly, although measuring on the small side. I work w/premature and 'small', really small, babies everyday and I can tell you that the outcome can be very positive. A lot of times these babies grow up no different than a term baby or a 'big' baby.
Don't stress yourself out. I did and my arthritis flared up because of the self induced stress. There are plenty of other risks that I'm sure you've read up on or heard of. I tried to find any way possible to reduce every risk possible and ended up stressing myself and flaring up. Whatever happens, happens. Enjoy what you can and know that almost everything can be dealt with.
Keep a positive mind. That’s the best thing you can do..and eat healthy.
I had to go back on plaquinil and low dose prednisone(10mg) during my 2nd trimester. Being pregnant is not a reason to completely come off all medication. I would get a second opinion if your doctor told you to stop taking meds. A well mom is better equipped to have a well baby.

[lfb]

sorry for asking but did your 20week scan go ok.. or did their say that your baby was small...