Lupus?

[midori1999]

Does anyone here have Lupus? I have found out today that I have it, and after a late second tri loss (twin girls) and an early miscarriage whilst on heparin, scared in an understatement.

I am trying to be positive and at first felt that at least I had a reason for what has happened to me (although losing my twin girls may not be due to the lupus) and they had a way to prevent future miscarriages, but it seems treatment doesn't prevent miscarriages in all cases.

 

[NikoleRae]

I dont have Lupus, but my mom does.. and she didnt find out until her 8th month when she lost my brother due to blood clots in her lungs and umbilical cord. Think positively.. its great they found out that you have it! After my mom lost my brother and she found out she had lupus, she got pregnant again, they put her on heprin.. and everything turned out fine.. she was very high risk, lupus, diabetes..etc Treatment doesnt prevent mc BUT if it has anything to do with the Lupus, you will be taken care of! Stay strong!
xoxo
Nicole

 

[superbecks]

I also know someone who has lupus and has 4 healthy babies because it is control and she is very well looked after. Good Luck xxx

 

[mummyconfused]

Hi,

My grandmother is presedant of the lupus foundation is Australia.

Almost all the females in our family have lupus including myself.

My grandmother, her mother, and my aunty have lost twins. This pregnancy started as twins and I lost one at around 5wks but im 36wks now and have a healthy 8yo son! My sister has had about 6MC but 3healthy children and 1 on the way!

They say LSE doesnt increase you chance of MC

I hope that everything works out hun and if you need any information please let me no and I can try help but stay positives

 

[Lottie86]

Hello!

I've got Lupus as has my Mum and Grandma.

I can't remember whereabouts in the UK you are but London have a fantastic Lupus Unit at St Thomas' (the biggest lupus unit in Europe I seem to remember) and it has a pregnancy clinic. I go to the clinic there and they always take fab care of me and the consultant who does the pregnancy clinic is absolutely lovely.

Have they started you on any meds yet?

 

[midori1999]

Thanks for replying everyone.

Hi,

My grandmother is presedant of the lupus foundation is Australia.

Almost all the females in our family have lupus including myself.

My grandmother, her mother, and my aunty have lost twins. This pregnancy started as twins and I lost one at around 5wks but im 36wks now and have a healthy 8yo son! My sister has had about 6MC but 3healthy children and 1 on the way!

They say LSE doesnt increase you chance of MC

I hope that everything works out hun and if you need any information please let me no and I can try help but stay positives

See, the haemotologist told me there were three 'groups' of symptoms relating to lupus. One causes recurrent miscarriages, one causes pulmonary embolisms and one causes the other symptoms such as tiredness, rheumatoid arthritis etc. I definitely fall into the first two categories and probably the last, but they need to do a further blood test to confirm the third group of symptoms I am having are caused by the lupus.

Hello!

I've got Lupus as has my Mum and Grandma.

I can't remember whereabouts in the UK you are but London have a fantastic Lupus Unit at St Thomas' (the biggest lupus unit in Europe I seem to remember) and it has a pregnancy clinic. I go to the clinic there and they always take fab care of me and the consultant who does the pregnancy clinic is absolutely lovely.

Have they started you on any meds yet?

Thankyou. I am in Northern Ireland.

I am still on twice daily clexane (heparin) after bi lateral pulmonary embolisms in April. I finish those next week and have been told to commence 75mg of asprin daily when I finish the clexane as we are TTC. Then, once I get a BFP I have to go onto one injection of clexane a day, plus continue the asprin. Does that sound right?

I am worried as I was on the clexane (but not asprin) when I had my last miscarriage, but that may have not been related to the lupus.

Was your placental abruption in any way related to your lupus?

 

[Lottie86]

Was your placental abruption in any way related to your lupus?

It seems so. I was told when I was pregnant with Findlay that prem labour, iugr, abruptions and stillbirth are all much more likely in people with Lupus I think they told me pre-e is more likely in people with lupus too.

I don't take blood thinners as I don't have Hughes Syndrome as far as they are aware at the minute (tests for that have always come back neg so far but they test me every 6 months when I go down to the clinic) but I do take meds for the lupus.

My consultant in London did however tell the hospital Findlay was born at that I had to take Clexane for 8 weeks after Findlay was born. They did consider putting me on blood thinners when I was pregnant as I had retroplacental clots very early on that didn't resolve until about 15 weeks but they decided against it in the end.

I'm not TTC but if I plan to I have to let my consultant in London know so they can put me back over to seeing the consultant at the lupus pregnancy clinic there who I have to speak to before I ttc and then when I get pregnant I have to have regular check ups at the clinic in London, regular blood tests and regular growth scans. I have also been told that if I want to TTC in the future I need to try and do it at a time when I haven't had an active flare of the SLE for several months (ideally 6 months)

I saw a haemotologist at my local hospital in pregnancy and she was useless (not saying yours is btw just that mine was) so I never saw her again and just stick with the specialists in London as all they deal with day in and day out is Lupus and Lupus pregnancies.

Is it SLE or discoid lupus you have?
Hughes syndrome (aka Antiphospholipid syndrome) is a blood clotting disorder that can go along with Lupus but not everyone with lupus has APS and not everyone who has APS has Lupus

 

[Lauraxamy]

Hi hun, my Nan had lupus and she managed to carry my Dad. I hope it all works out for you

 

[petitpas]

Hi Midori,
I don't have lupus, but I have a clotting gene and I also suffered from DVT and Pulmonary Emboli last year. I was on once-daily (low preventative dose) heparin shots during my last (viable) pregnancy, but still lost it. The doctor I saw reckons it was due to my clotting disorder and that due to the fact I've clotted before being pregnant and I've had two losses, I should be on the twice-daily shots.
I think it's worth discussing with your doctor whether this is an option for you since you've already tried the low dose and it didn't work.
Good luck and stay strong

 

[jenny25]

i have a mild form of lupus they call it aps im on asprin and clexaine daily i only found this out in may after having tests done at the end of march x

 

[midori1999]

Thanks everyone.

Lottie86, I definitely have APS and apparently need a more complicated (DNA?) blood test to see if I have the SLE 'part' of lupus. I am finding it slightly confusing to be honest, not helped by the fact that I ended up seeing a registrar and not my haemotologist at my appointment and the haemotologist only saw me when I mentioned I had had the miscarriage and she was short on time. I expect I will find out more at my next appointment. I do have signs of rheumatoid arthritis though, but haven't been tested yet and put it down to the fact my Grandfather has RA.

petitpas, thanks. I am already on twice daily shots of heparin (clexane) due to it only just six months post diagnosis of my PE's, so I was on twice daily injections when I miscarried. I am hoping it was either unrelated to any clotting problems or that the asprin will make a difference.

 

[petitpas]

I've read that aspirin and heparin work differently somehow, which is why they often give you a combination of both. Heparin can't cross the placenta, whereas aspirin can (or something like that). So if you didn't take aspirin before, it's definitely worth a try next time (as long as your doctor is ok with it). The US doctor I saw also mentioned new research showing that higher doses of folic acid can help prevent clotting somehow. I thought that was rather interesting and will mention this to my UK doctors.

I had to wait a year after my PEs until they cleared me for TTC-ing. Still, I prefer being on the shots to the warfarin. At least we can eat and drink what we want

 

[smeej]

Hi there,

I have Sjogren's syndrome which is an auto immune disorder that shares many symptoms with lupus and the treatment and risks are also generally the same.

I was diagnosed about 3 years ago and have had multiple tests. I don't have APS which can cause the blood clots etc, but I am positive for the Anti-Ro antibody which carries a risk of Congenital Heart block in the baby. As a result i have been told that i will be scanned far more regularly from 20 weeks, so they can check the heart development.

I am almost 13 weeks at the moment, and everything has been fine so far, but i am obviously very worried for the baby throughout the rest of the pregnancy.

Have you been tested for this anti-body - I think it's a standard part of the screening when diagnosing lupus?

 

[gracesmommy81]

hi, i have aps, which was diagnosed after a stillbirth at 39 weeks.
I then miscarried twins early on because of not starting clexane in time.
I am now 30 weeks with twins, and have been injecting clexane twice a day since the bfp, and i also take one aspirin a day. So far, everything is perfect, my twins are growing to scale, and i have blood doppler scans which has shown the blood flow is good.