Lupus (SLE) & anti-phospholipid antibodies - unexpected pregnancy and very worried if I'll be well enough

[Veethebee]

Hi, I have been unwell for 10 years and I was diagnosed with Lupus (SLE) & anti-phospholipid antibodies about 1.5 years ago. My lupus is fairly under control but the main way it affects me is severe fatigue, every day is a battle to just do normal essential activities. I'm not well enough to work. I have just found out I am pregnant, which is very unexpected. My husband and I have always wanted children but I really wanted to be better and stronger. I am really worried if I will be well enough to get through the pregnancy, to give birth and mostly, how I will be well enough to look after a baby, when I often struggle to look after myself.

If anyone has any advice or were in a similar situation please can you tell me (truthfully) if and how you manage.

Also, I saw my rheumatologist last week and she agreed I need to be urgently on heparin injections but I have to wait until I go to the high risk combined clinic with a specialist obstetrician and a lupus consultant who specialises in lupus in pregnancy,which is in 4 weeks time. This seems like a frustratingly long wait.

[Marta37]

Hi, first of all congratulations on your pregnancy!

I have the same conditions and had a baby 8 months ago. I was really well looked after at St Thomas’ in London and the pregnancy went well although I am having a flare now. I think 4 weeks wait is unacceptable ad you need the meds now. Where are you based? I self-referred myself at st Thomas’ and wrote a note on my form explaining the urgency. They saw me very quickly

I hope you find a solution soon and can enjoy the pregnancy without any concerns

[Veethebee in reply to Marta37]

Hi, Thanks for replying Is the flare you are currently having worse than a one you've had before? I've got my first midwife appointment tomorrow so I'm going to ask about it then to see if there's anything that can be done to speed up my appointment. Congratulations on your baby by the way!

[Sara_A]

I think I started on heparin at 6 wks was already on aspirin.

I had similar symptoms to u when pregnant with both of mine now 5y and 2y.

I think u need to look at the support u have around you to see how u will manage.

I’m not gonna lie I find it very difficult at times especially with fatigue. When my 2 nd was born my joints/hands/wrists were so bad I couldn’t even lift her out the cot so was started on slow release morphine for the pain just do I could pick her up. I had to and still do really, pick the kids up using inside of my arms and elbows.

As u say u have always wanted children so I think u just cope with it but u do need a very supportive partner/husband who is willing to take over the care when u need to go to bed etc.

Ps I’m at my wellest with lupus during pregnancy, the drs just want me to stay permanently pregnant!! The hormones seem to make everything better. If only they could treat lupus with these hormones all would be ok!!

How many wks are u? 4 wks does seem a long wait as u are considered high risk pregnancy. Surely the gp can send an urgent referral to the obs that’s what I’d ask for x

[Veethebee in reply to Sara_A]

Hi, thanks for getting back to me, it's really good to hear from people that are in a similar situation . Thanks for being honest. I already take aspirin and hydroxychloroquine as blood thinners. I'm currently 8 weeks pregnant. I have sacroilitis as well, which I'm worried about how it will worsen during carrying a child and then looking after one but as you say I'm sure there's always a way for you to manage. I thankfully do have a great husband and a supportive family so hopefully we will cope. Hopefully my midwife tomorrow will be able to get me to be seen more urgently.

[Sara_A in reply to Veethebee]

I have sacrolilitis too and have a blue badge too so have fairly significant mobility/pain issue.

Yes I’m sure the midwife will get u straight thru to see the obs consultant, tho beware as some midwives I’ve come across knew nothing about aps!! So make sure u are pretty insistent, but it’s good u are on aspirin already, I only had aspirin for my 1st pregnancy. Then aspirin with heparin for 2nd.

I think if u have good support and they are all aware of the circumstances that u will manage fine, u kind of do just learn to manage and survive somehow! Esp with 3 hourly night feeds!

I was just under a normal obsteatrian and she liased with my rheum cons when needed ( even tho they were at different hospital trusts 90 mins apart).

Don’t be afraid of being firm and insistent it’s u and ur baby that matters.

Just don’t look at my post from yesterday where I was struggling to stay awake til Dad got home!!

It is hard so there’s no point in lying, but it’s possible! I had 2 pretty close together too had both in nappies when 2nd came along!

I still manage to work 12 h a week. I’m on immunosuppressants, steroids, hydrox plus millions of others!!

[baba]

There is also an APS/Antiphospholipid/Hughes Syndrome/"Sticky Blood" forum here on Healthunlocked:

healthunlocked.com/hughes-s...

The GHIC Website:. healthunlocked.com/api/redi...

Good luck

[Paul_Howard Partner LUPUS UK]

Hi Veethebee ,

Congratulations on the news of your pregnancy. We actually published a blog article about lupus and pregnancy recently which may be of interest to you - lupusuk.org.uk/lupus-and-pr...

We also have a booklet which you can read/download at lupusuk.org.uk/wp-content/u... - or if you would like a physical copy posted to you, please just send me a private message or email [e-mail] with your name and address.

Please keep us updated with how you are getting on.