Lupus and Pregnancy advice

[becs234]

Hello everyone,

I am new to these boards, I have logged on for some advise from other people in the same position as me.

I was dianosed with SLE 8 years ago, I am now 27. I have recently found out I am 9 weeks pregnant and this is my first pregnancy.

Having read up on Lupus and Pregnancy I am aware there maybe some complications. I have had a blood test for APS and am waiting for the results which I am finding very frustrating as all I can do is sit back and wait.

I have also been told by my hospital I won't be able to have a scan until after 12 weeks - It's the waiting i am finding so frustrating.

[jodipat]

Hi there,

Congratulations on your pregnancy! I am 28 years old and 18 weeks preg and have SLE. I have to take asprin 75mg daily. My consultant has done this as a precautionary measure in case my blood changes rather than to wait for it. I think as long as you are keeping well and not having too much of a flare fingers crossed you should be ok. Try not to worry too much as it will make your SLE worse! I do have scans every 4 weeks just to monitor growth etc. Some hospitals prefer not to do this till 24 weeks thoug as there is not a lot can be done if there is a problem. If you are unhappy with the hospital as to be moved to a different one, prefebaly one with a fetal medical immunology department as they will specialise in people with Lupus. Try not to worry too much though, I know it is hard especially before your scan, I will keep my fingers crossed for you!

Take care

Jodi

[watslove]

Congrats on being pregnant!
Wow, I am always happy to know every lupus patient who is having a baby. It gives me hope.

[becs234]

Thanks guys,

I have been thinking about taking asprin to be on the safe side, I might start doing that now.

My hospital will only do scans before 12 weeks if there is bleeding or abdominal pain.

I get my blood test results back at the end of the week so fingers crossed.

I am trying not to worry but sometimes its easier said than done.

Thanks for your messages of support - it's good to talk to people who understand what i'm going through.

[Clare.T]

Congratulations !

I hope too that you are in the care of a high risk ob/gyny and maybe neo or perinatologist. It is best not to take anything ( like aspirin ) off your own bat - they should be advising you !

Do you know if you had the anti -Ro antibodies before ? Get tested for them now, because if so there should be special scans to make sure the baby's heart is OK

Let us know how it goes and good luck !

Clare

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:12pt;line-height:100%">
Hello there and congratualtions !
Just a word of advice...PLEASE DONT TAKE ANY MEDS TILL YOU HAVE SPOKEN TO THE DR.
I have APS had to succesful pregnancies and took Asprin but only on the advice of my consultant....why not ring and see if the results are back ?
good luck
style_emoticons/<#EMO_DIR#>/cloud9.gif </span></span>

[cath]

Hi Becs, and <span style="color:#33CC00"><span style="font-size:12pt;line-height:100%"><span style="font-family:Arial">Congratulations</span></span></span>

Can I presume you are in the UK? Whereabouts exactly?

I know that in some places there aren't yet enough ultrasound staff and machines to get everyone in for an early scan, but according to NICE (a body of preofessionals and public who study medical evidence to make recomendations about the best way to do things), all NHS hospitals are supposed to be including an early (dating) scan.

That probably isn't any help to you, because it won't instantly change your hospital's practice, but I just wanted to let you know you have my sympathy. Most women find waiting those first weeks really hard, and you probably have a few extra worries and especially want to see/hear the baby. Next week (10/40), the midwife might be able to hear the heatbeat (no guarantees - it is often not findable until 12/40). You could make an appointment to try if you wanted.

Did you ever have the APS tests before you got pregnant? It is good that you have had them done now. Sometimes women only have the antibodies during pregnancy, so even if you had a previous negative, it is a good idea to get them checked out now.

Clare is right about the anti- Ro antibodies too. You should have an ENA done to deturmone if you are Ro positive. These antibodies are associated with neonatal lupus in the new born baby. Not all babies from Ro positive mums get neonatal lupus. If you do have it, a fetal medicine doctor should be involved in your care to keep an eye on the baby during the pregnancy.

Regardless of what antibodies you do or don't have, you should be under consultant care, and preferably the high risk consultant care unit.

I also agree with the others about the asprin. Wait for the doctors guidance.75mg asprin is often used to prevent clots in the placenta in women with APS. On the other hand there is also a study that links NSAID (of which asprin is one) use with increased incidence of miscarriage. In other words, if you have APS it will help, if you don't it will make the situation worse rather than being simply unnecisary.

Good to have you here with use, and I wish you every success

style_emoticons/<#EMO_DIR#>/wub.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/wub.gif

Let us know how you are getting on style_emoticons/<#EMO_DIR#>/ok.gif

X C X

[becs234]

I'm not sure what I have been tested for in the past, I am seeing my SLE nurse tomorrow so I will ask her what they have on file for my previous blood tests. It is good that I am now able to go armed with a few questions for her.

I haven't taken anything such as asprin and agree it's best to wait until I have spoken to my doctor.

I live in East London I am going to try to get an appointment at Homerton Hospital as I have been told they have specialist there that deals with pregnancy & lupus .

I will certainly keep you updated and hope to hear for other members who are pregnant or trying - Good luck to you all style_emoticons/<#EMO_DIR#>/smile.gif

[cath]

The other option is St Thomas's where they have a special lupus pregnancy center. How more specialised can you get than that style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/cloud9.gif style_emoticons/<#EMO_DIR#>/flowers.gif

All the best style_emoticons/<#EMO_DIR#>/highfive.gif

X C X

[Maia]

Hi,

I didn't have my first scan until 20 weeks!

Really, think of it as a good thing they think it's OK to wait to do a scan as that means everything
is going swimmingly! *smiles*

You will likely have more scans than most women though, just to be safe. I had 3 total
and I had a perfectly normal/healthy pregnancy and baby in the end despite SLE and
anti-cardiolipin antibodies.

Best of luck to you! And congratulations style_emoticons/<#EMO_DIR#>/smile.gif

[becs234]

I had a appointment with my Lupus nurse yesterday who confirms that my old blood tests show I have got the anti-bodies, I have been referred to St Thomas's which is good news as they are experts on the condition. But i still have not been told what i should be taking to help with the condition. I guess I'll just have to wait until my appointment at St Thomas's and hope that it will be soon.

At least I know what I am up against now.

[cath]

Dear Becs,

Good news about the referal, and I'm glad things are still going well for you.

I'll be interested to know what they advise. Let us know?

In most centers the standard treatment for someone who has the antibodies but has not had problems before is 75 or 80 mg asprin daily until about 33/40 (NSAIDS are not allowed late in pregnancy as they make the baby's heart valve (ductus ateriosus) close too quickly).

For those who have had problems, IM Heparin is usually also given.

I would have good faith in what St Thomas's say, so if they advise differently, it would be good to know as they are leaders in the field! style_emoticons/<#EMO_DIR#>/goodvibes.gif

All the best,

X C X

[pnutts]

Just wanted to say congratulations.

I never had an u/s until about 12 weeks either. It's routine at my ob and they knew I was a high risk patient.

Best of luck for happy 9 months

[becs234]

<div class='quotetop'>QUOTE(cath @ Apr 27 2006, 01:29 PM) Quoted post</div><div class='quotemain'>
Dear Becs,

Good news about the referal, and I'm glad things are still going well for you.

I'll be interested to know what they advise. Let us know?

In most centers the standard treatment for someone who has the antibodies but has not had problems before is 75 or 80 mg asprin daily until about 33/40 (NSAIDS are not allowed late in pregnancy as they make the baby's heart valve (ductus ateriosus) close too quickly).

For those who have had problems, IM Heparin is usually also given.

I would have good faith in what St Thomas's say, so if they advise differently, it would be good to know as they are leaders in the field! style_emoticons/<#EMO_DIR#>/goodvibes.gif

All the best,

X C X
[/b][/quote]




Cath,

I have had my appointment at St Thomas' and just thought i'd let you know the outcome. My latest results show that I have tested negative for APS, although my test results 6/7 years ago were postive - not sure how that has happened.

I now have to have more blood tests to find out if I am Ro or LA positive or negative, this testing seems never ending but I am glad that I am now getting somewhere with it.

I have my first scan next tuesday so looking forward to that.

Becs

[cath]

Dear Becs, thanks for the update - I'm really glad the appointment went well. Hope the pregnncy continues to go well too style_emoticons/<#EMO_DIR#>/cloud9.gif

All the best with the scan - your first peek!

X C X style_emoticons/<#EMO_DIR#>/wub.gif

[jemccormick]

Hi Everyone,

I am new to this site, actually as of today.

My main reason for joining this site is to speak with other women who have lupus and are pregnant. I am 25 and was diagnosed 3 yrs. ago. They say my condition is mild, but if you get pregnant there is a good chance it can get worse. Of course this brings up major concerns for my husband and I b/c i want to be able to raise my child and be here to raise my child.

Did anyone else have these same fears prior to getting pregnant?

Thanks for listening. style_emoticons/<#EMO_DIR#>/smile.gif

Julie

[jodipat]

Hi,
Welcome to the boards!

I was in a similar situation to yourself when I was your age - I am not 28 and got pregnant at 25 - I had been diagnosed for a few years but said I was Mild!
I actually got pregnant sort of by accident and was quite concerned about it - especially the more I read! Please be careful as some of the stuff you read on the internet is just scary and not necesarily correct.
I had to take asprin throughout the pregnancy as a precaution, but other than that I was OK. I did flare quite badly once had child, but think this may have been partly due to bad pregnancy management at the hospital I was under. I think as long as you are under a good hospital etc then they are prepared for the after effects.
I am now having child number 2 and am 24 weeks preg. Am at different hospital this time and they are really spot on with everything. I still have to take asprin daily and plaquinil as have had a slight flare this pregnancy. I have been told by my specialist that a high number of luppies are better during pregnancy.

I know it is a hard decision to make, and can understand your concerns. Once I was diagnosed with SLE I was a lot healthier as I knew what I was up against. you have to really listen to your body though and rest enough. I gave up work half way through my first pregnancy due to the fatigue / sickness etc and once well rested felt a lot better. Also as long as you have a good support of family etc it is a lot easier.

I do get anxious that my children will grow up without me - but know as long as look after myself I am have as much chance of still being around in 40 years time as anyone else!

I hope you make a good decision and keep healthy.

Jodi x

[jemccormick]

Thanks so much for the words of confidence style_emoticons/<#EMO_DIR#>/smile.gif I just never thought i'd ever have to be making a decision on having children. Just thought it was a known fact to me. I guess worse things can happen, but even after 3 yrs of being diagnosed, i'm still in shock kinda.

I'm sure everything will work out, it's just getting to that point.

Thanks again, truly appreciate it.


Julie

[becs234]

Hi Julie,

I have had lupus for 9 years and before becomming pregnant I also had fears about pregnancy and convinced myself that I would never have children. 8 weeks ago I found out that I was 8 weeks pregnant (making me 16 weeks), and so far everything has been fine. I am under high risk at the hospital and have to have regular blood tests to make sure that I haven't flared. My consultant has told me that my lupus is in remission remarking that pregnancy must suit me.

Speak to you doctor to discuss your concerns before you try for a baby, but don't be afraid to try lot's of women with lupus have gone on to have healthy happy babies.

Good luck

<div class='quotetop'>QUOTE(jemccormick @ Jun 1 2006, 07:34 PM) Quoted post</div><div class='quotemain'>
Hi Everyone,

I am new to this site, actually as of today.

My main reason for joining this site is to speak with other women who have lupus and are pregnant. I am 25 and was diagnosed 3 yrs. ago. They say my condition is mild, but if you get pregnant there is a good chance it can get worse. Of course this brings up major concerns for my husband and I b/c i want to be able to raise my child and be here to raise my child.

Did anyone else have these same fears prior to getting pregnant?

Thanks for listening. style_emoticons/<#EMO_DIR#>/smile.gif

Julie
[/b][/quote]

[Melody2]

Hi Julie,

I'm like you, 29 years old, dx with lupus (they are calling it mild as it has done no discernable damage despite my symptoms). I have anticardiolipin antibodies so have been told to take a baby aspirin even during pregnancy, should I decide to become pregnant. I am very nervous, nervous about how my health will hold up during the pregnancy and afterwards, and I am concerned about being able to manage with the low energy levels I have. But my doc put it aptly...I could experience a flare in my lupus because I'm in an accident or some other thing happens, so he told me not to be afraid or make decisions based on fear. Anything stressful emotionally or physically could put me in a flare, so not to avoid pregnancy, because something else may put me there instead, does that make sense? They have said I'm ok to go ahead and try...and a certain amount of life you have to give in to faith or whatever you like to call it, because as much as we like to think we can control our lives, we can't. So if it's something you really want and something you have really thought a lot about, and your docs have given you the go ahead, then I say do it. You don't want regrets. And I'm afraid, I'm like you...but living with fear means we don't really get to fully live. I wish you luck with whatever your decision is! Just know you're not alone, they're are a few other lupies nervous about pregnancy, but if it's something we want, then it's time to stop being afraid and just go with the flow so long as we've been given the go ahead by the doctors. We can't predict how we'll feel, who knows maybe we won't flare! For me family is a huge component of my life, and I don't want to be wishing down the road if only I had just tried. style_emoticons/<#EMO_DIR#>/smile.gif

Take care, keep us posted.
Melody style_emoticons/<#EMO_DIR#>/clover.gif