Lupus & Pregnancy

[KGipp]

Hello everyone, I was diagnosed with Lupus SLE in October this year following a rash and unexplained blood results. At the same time I have been considering pursuing IVF as my husband and I have been struggling to naturally conceive (a separate issue to the Lupus). Today I met with a fertility consultant who explained that although we'd be eligible for IVF we need to seriously consider if this is the route we want to take because of the added complications that having Lupus brings to pregnancy. My confusion is that my Lupus consultant explained that some women with lupus can be more prone to suffering miscarriages (if they have something called sticky blood for which I have one marker (out of a possible three) and as such she wasn't overly concerned), and there is a risk of fetal growth retardation but that it is vary rare. The only other thing she mentioned was that I'd probably need to take aspirin throughout my pregnancy. My fertility consultant scoffed at this and said that the risks aren't that rare and that there would also be a number of risks to me that we'd need to consider. He said that the bottom line would be deciding between my long term health and having a baby. We're booked to see another specialist at the end of February to discuss the possible risks further so that my husband and I can make a more informed decision but, I was just wondering if in the meantime anyone in this community has any additional information that could help put our minds at ease.

Thanks!

[libbygray]

Hi. I've just had baby number two, diagnosed sle after the first. My pregnancy was fine , was monitored closely. At 12 weeks I took daily asprin, from 16 weeks met weekly with midwife to listen to baby's heart and monthly with rhumy for blood tests and growth scans. I was well monitored and fortunately suffered no complications. They did recommend that I had a c section! Hope this helps put your mind at rest a little! Good luck

[Hidden]

Hi KGipp, I'm in the same boat as you are. I also positive for Ro antibodies. It doesn't you going to get all the consultant has mentioned to you.they need to tell you all the complications just in case anything happened. If you want to msg me you are welcome.

Amira

[Jane-pop123]

Hi KGipp.

My daughter was diagnosed with Lupus SLE 2years ago also has sticky blood syndrome and she was told she wouldn't be able to have children as a very bad flare had damaged her hormones etc., it took 10months for her to recover from that flare. However 8 1/2 months ago she fell pregnant, she would say she has never felt healthier, she has been on a research project 'For women with Lupus in Pregnacy' called LIPS research project, run by her consultant in the North of England for the whole of her pregnancy. She has been on aspirin up to 2 weeks ago because the main problem at first we were told is miscarriage, and it helps with the blood supply to baby which reduces the risk of low birth weight babies.

We were told that a lot of women are healthy through their pregnancy due to progesterone they don't know why but this often protects against a flare, also if you breast feed after this keeps your progesterone levels up, but r more prone to a flare 3 months after.

Her blood markers have never been better for the Lupus or the sticky blood, the doctors are going to keep a close eye on her after the baby is born.

Hope this helps I also think it's helped for her to have some normality in her life.....

I would push to go ahead with either trying or ivf don't let them put you of may be trying to get a good Lupus specialist is important too.

My daughters baby is due in 2weeks so she has gone all the way and stayed healthy..

Good Luck

[LUPUSadmin]

Hi Kgipp,

We've got a booklet available on our website called: 'LUPUS: A Guide to Pregnancy', which might be of interest to you. This can be found here: lupusuk.org.uk/publications/

If you have any further questions then please do just drop Paul or I a message and we'll do all that we can to answer them.

George

[Tinksie]

Hi, I was diagnosed with SLE 2 years ago but I suspect I've had it for at least 9 years. Over the last 8 years I've had 2 children through IVF, or more precisely ICSI, and had 1 miscarriage. I've also had a third surprise baby naturally! I was told I had Symphysis Pubis Dysfunction during the 2nd and 3rd pregnancy and I wonder now if it was Lupus related. I was monitored more closely for the third baby as they'd changed the guidelines by then to monitor those with an overactive thyroid (Graves disease related). That was more stressful as more scans can show up things that they consider worrying only to have resolved by the next scan which is good to bear in mind. I had ovarian hyper-stimulation which is a rare but scary potential side effect of IVF and I wonder at times if this is what kicked off the Lupus. The point is, even if that is the case, I wouldn't change a thing. My children are the most precious gift I've ever received and even when they're really hard work and I'm feeling completely lousy I wouldn't have it any other way. Only you can of course make that decision for yourself. I would also say that fertility experts are not usually Lupus experts and also if it is NHS funded there could be a financial issue underlying the advice (but that is perhaps my cynical mind and could be entirely unjustified).

All the best and if I can be of any more help please ask.

Tinksy x

[Cjpratt]

Hi , I had treatment 20 years ago , but had 2 miscarriages on IVF , then was diagnosed with lupus , so I fell pregnant again with twins ( IVF ) but had some injections for 16weeks & aspirin , for my bloods & lupus , I now have 16 year old twins , boy & girl xx good luck xxx ask about the injections xx

[emilyb]

Hi sorry if this is a late reply but I've only just picked it up. I was diagnosed with SLE & Antiphosphilipid (SP?) in 1990 after 5 miscarriages and very poor fertility. I had IVF/

"GIFT" and had my son at 30 wks gestation. I was prescribed the steroid prednisolone for the whole pregnancy and was admitted to hospital around 10 wks because the sugar coating on the Steriods was sending my sugar levels too high.

I was very closely monitored because each week the lupus antibodies would get used to the steroid and start to rise and attack, so each week the Steriods were increased.

From my experience I would want close monitoring and someone who was prepared to do that. Hence, I was with a well know consultant who didn't really monitor me and I went onto loose (5 miscarriages between 12 - 20 weeks). When I became pregnant for the 6th time after years of fertility and heartache, I decided to "jump ship" and leave the consultant that I had been with in my home city of Liverpool and joined forces with Manchester Royal SLE Clinic who agreed to work with a Consultant at Warrington Hospital .... Eureka ... A 2Lb healthy son !!!

Not meaning to frighten you, BUT I would treat it more seriously than one of your specialists appeared to because 10 days after I had my some there was a full page article in the National News Papers because a young mother had died just after giving birth due to SLE & Antiphospilipid/Anticardalipon antibody (SP?) London Area) 1993 & yes hopefully we have moved on since then but I wouldn't be so sure or take anything for granted.

I now have a fine healthy 22 year old son who made all the pain, discomfort, heartache all so worthwhile and if I could I would do it all over again tomorrow but I was nearly 40 when I finally got him!

Wishing you Good Health & Many Babies x

p.s My family have much experience of the dreaded SLE & Sticky Blood as my sister had gone before me and had 2 "still births" :(((. (She went on to have 2 live sons!) but I still had to fall between the stools as they say before I was treated seriously !!!