[GillP1977]

Hi my name is Gill, I'm very confused about lupus. I'll jump straight to the point & explain. I recently lost my second baby (12 weeks ago) I'm still very raw so please bear with me.

I'm confused because although the dr's give me info overload I'm still confused as to if I have Lupus SLE or discoid Lupus.

They first realised I have Lupus when I was pregnant with my 2nd baby during a routine antenatal appt at the hospital. 12 months before this I had my first baby (Kimberley) I had a pretty straight forward pregnancy up until 26 wks when I suddenly developed severe pre eclampsia. Kimberley was delivered by c section when my body started failing. She weighed 1lb 4oz, she was in special care for 16 days before she died. They put her death down to severe PE.
With my 2nd baby as I mentioned they picked up my Lupus at around 20 wks. They described it as my body is fighting to get rid of my baby just like our antibodies fight off a cold. One dr even implied I was allergic to being pregnant! I was treated with asprin & fragmin injections. I delivered a healthy baby boy at 37 wks by c section (matthew now 10) weighing 4lb 13oz, They delivered me at this stage as I was developing pre eclampsia.

With my 3rd pregnancy I was started on asprin & fragmin at around 6 wks, again the preganacy was very stressful but thankfully I delievered a baby boy (Kyle now 3) at 38 wks again by c section weighing 7lb.

with my 4th pregnancy I was started on asprin & Tinzaparin at 14 wks. At 24 wks I had a uterine dopler scan, they noticed that I had uterine artery notchings which basically means the blood to the placenta wasn't great, I presume because of my blood was clotting too much. I was then booked in for 4 weekly growth scans. From around 25 wks my bp started to rise & occasionally had protein in my wee. At my 28 wk growth scan they noticed my baby's growth had slowed down & he was measuring 25 wks. My bp was sky high & i had 2 traces of protein. I'd developed PE again & I was admitted. The next day they did another detailed scan & they noticed that the blood flow to the placenta was seriously affected & the flow was now reversing back from the placenta meaning my baby wasn't getting all he needed. After 3 days they decided to deliver me again by c section. Lewis was born weighing 1lb 12oz and passed away after 2 & half hours. Needless to say we are devastated. On Lewis death cert the causes of death were Mother's Lupus, High Blood pressure (pre eclampsia) & uterine retardation dopplings. They may have well have said I'd killed him. My condition has never really been explained to me. I recently met with my consultant about Lewis's death & she said I have discoid lupus. I'm confused I feel like I'm being told different things. Do I get SLE only when pregnant then have discoid lupus when I'm not?
I'd like to chat with other people who have been affected by the loss of a child due to Lupus.
Thanks for listening

Gill x

 

[Kate G]

Hi Gill

So sorry to hear what you've been through. I haven't lost a child but I am at high risk of it happening and very scared about it.

To answer your question, it sounds as though you have SLE and Hughes syndrome, but only your doctor can tell you for certain. Did they tell you you have lupus after taking blood tests and do you know what blood tests have been done? I find it helped me a lot to always ask what blood tests are being done and what they look for.

I am not a doctor, just a patient who reads a lot of the literature, so please do check everything I say with actual doctors. However, DLE (discoid lupus) is when only your skin is affected by the lupus - i.e. you get rashes, usually in response to sunlight. If the rest of your body is affected then you have SLE (systemic lupus).

To complicate matters, it is usually not SLE itself that causes complications in pregnancy but Hughes syndrome (also called antiphospholipid antibody syndrome or APS). This is very common among lupus patients but is a separate illness and you can have it without having lupus. It is where you have specific antibodies that thicken your blood and can cause blood clots, miscarriage, pre-eclampsia, eclampsia, pregnancy-related hypertension and stillbirth. It should be treated with a blood thinner like aspirin or warfarin and regular tests for clotting.

I hope this helps. Lots of love, xx

 

[Katharine]

Hi Gill and welcome

I'm so terribly to sorry that you have just lost a child and that you have had so many difficult pregnancies. Hugs to you :hug:

I can understand that you are confused and really can't understand that a doctor hasn't explained to you

I'm not very good on techy stuff but felt I had to try and reply as my heart goes out to you.

Usually the condition that causes problems during pregnancy is not actually lupus itself but something called APS (or Hughe's syndrome, or "sticky" blood") it is basically a blood clotting disorder where the blood is too thick and it often leads to miscarriages and the type of problems you have had.

It can be confusing for the patient as the blood tests which diagnose it are the anti-phospholipid test and the lupus anti-coagulant test. This last is very badly named as it actually has nothing to do with lupus except that many lupus patients also have APS (but one can have APS without lupus).

The following link explains APS and its diagnosis

http://www.londonlupuscentre.co.uk/what-is-hughes-syndrome-diagnosis.html#1

Outside of pregnancy do you have other lupus symptoms?

see criteria and alternative criteria in "not yet diagnosed"

http://www.thelupussite.com/forum/showthread.php?t=33123

Are you on any meds for lupus other than the meds you take during pregnancy? Do you also take anti-clotting meds outside of pregnancy? Aspirin, heparin...?

I presume that if specialists have mentioned DLE or SLE there is a reason.

Do you see a rheumatologist regularly?

Sorry to ask so many questions but it is to help understand better then hopefully people can answer better.

I hope that helps a little,
Katharine

 

[Maia]

You'll really have to go to your treating doctor for the discoid lupus and ask him/her what blood test results you've had test positive for lupus, combined with symptoms (do you have joint pain, fatigue in addition to the rashes for example?) --- and do those things point towards SLE or have you been diagnosed with that? What treatment have you been on all these years?

I'm so sorry to hear of your tragic losses... I can only imagine the pain that causes. However - it's not your fault. You most certainly didn't kill your baby no matter what it lists on that report. To me, it sounds like you most likely have clotting antibodies or some kind of clotting condition. I say this only because you do not mention the typical SLE symptoms, do not mention treatment medications for SLE, and it sounds like you are quite healthy except for problematic pregnancies & discoid lesions. However, you really need to have a discussion with your doctor about all this to be certain.

Some women are just prone to pre-eclampsia; I think the majority of pre-eclampsia cases are among women without lupus & it's just one of those things with no known cause really.

I encourage you to write out a list of questions for your doctor, and ask for copies of any lupus relevant blood test results or urinalysis results so you will better know what condition you actually have.

Best wishes to you... (((hugs)))

 

[andi04]

*hugs* i'm sorry to hear about Lewis, as for you being responsible take that out of your mind its not your fault, people who have medical issues, and try to have babies, have a hard time, obviously you know this, but please do not blame yourself for losing your child. I'm here if you need to vent.

andi