Lupus? Especially relating to pregnancy...

[midori1999]

Does anyone have this or any information on it please?

I had bi-lateral pulmonary emboli during a twin pregnancy in April. The pregnancy was very complicated anyway, my waters broke at 14+5, and sadly I lost both of my baby girls after they were born too prematurely to survive. ( we had one precious girl for 15 mins, the other for nine days).

I have since had an early miscarriage. Prior to that had three successful and fairly uneventful pregnancies, but my youngest surviving child is 6 1/2 now.

I had an appointment with the haematologist today and it seems my last blood test showed I have lupus. I was tested during my twin pregnancy and wasn't shown to have it then. I have had blood taken again today to confirm.

My appointment was a little rushed as I had originally gone in to see a registrar, who went and got the haematologist when she found I had had a recent miscarriage. I am still on heparin injections twice daily after the pulmonary emboli but finish those next week. I have been told to take 75mg asprin daily once I stop the heparin and then as soon as I get a positive pregnancy test to go onto once daily heparin injections.

Other than that, I am a bit unclear as to what to expect. Tbh, at first I felt relieved that at least they may have found a cause for the problems I have had (premature rupture of membranes can be caused by blood clots in the placenta, which could be caused by lupus) but it seems asprin/heparin treatment doesn't always prevent miscarriage and late miscarriages are also more likely if you have lupus, plus things like IUGR and pre eclampsia, plus maternal risks.

I was told that my only symptoms of the lupus may be recurrent miscarriages and higher risk of DVT/PE etc, but I have been ridiculously tired frequently, have headaches, dry eyes and suspected arthritis in my hands. I even got my GP to test me for underactive thyroid as I felt that might be a cause of my tiredness/headaches, but it wasn't. The symtoms aren't really life limiting though, but I do often need a sleep during the day and am sometimes so tired I don't feel I can carry on.

Any info anyone has, whether relating to pregnancy or not would be appreciated.

Hi there,

My name is Sharon and firstly I am so sorry for your loses and really understand what you have been going through. Your thread is so similar to my own experiences. After giving birth to my second child (now 14 years ago), I suffered a pulmoury emolisium (soz not sure how to spell it). Four years ago I started to try for a third baby (was with a new partner who had never had children), I fell pregnant with twins and sadly lost one at 12 weeks and the second at 13 weeks, a year later I fell with twins again, sadly again I lost them at 8 weeks, which resulted in an operation to remove the second twin. After investigations I was told that my blood was clotting and that I had a blood clotting disorder, and due to my age I was likely to be going through the menopause so maybe I should give up trying. (I was very upset and ignored the advice), off my own back I started taking asprin to thin my blood and fell pregnant again. I started bleeding at 6 weeks and paid privately for a scan to make sure that everything was ok, I too started to inject heparin throughout my pregnancy and for two months after, however my pregnancy was not without complication's, I had bleeds throughout, was losing loads of weight, was passing out and suffered low blood pressure throughout, my bady wasn't growing at the rate he was suppose to be and had talipies (club foot) on his left side. I had to have weekly scan's and my baby had IUGR. Two weeks before I was due, I went for a routine mid-wife appointment, I felt terrible with flu and was very unwell, it was decided there and then, that I should be induced at 38 weeks or my baby would die. It was lucky they did, my baby had been surviving on half a placenta and the other half of the placenta was about to die. Brandon was born New Years day 09 weighing only 5lb. When he was 3 weeks old, I had a mini stroke at home and from that day become very ill, I started to feel very fatigued, my eye sight got worse, and I was suffering with terrible pains in my wrist's and ankles, I felt like an old women, I was given a load more blood test's and i still had the blood clotting disorder, my thyroid had gone under active, I was anemic for two years and I to was diagnosed with Lupus, but I have had no support since my diagnose and have only been told to come back should my symptoms get worse and to take anti-inflam tablets for the pain. What I know about Lupus is that it is an auto-immune disease, and symptoms may vary, some people hardly have any symptoms and others find it unmanagable, there are Lupus triggers, stress can cause a Lupus flare-up, and so can sulphites which is found in all wines. one day you can feel fine and the next day you can wake up and feel as if you are going to have the flu and feel tired, rundown and have a general feeling of being unwell, the pains in the joints can be mistaken for arthritis. Unfortunantly in this Country not alot is know about Lupus and it is very hard to diagnose. Due to the lack of support from my doctor I did start researching it on the internet and it was interesting to find that blood clotting disorders, thyroid, miscarriage, anemia, IURG, Protin S, were all linked to Lupus. In America they do treat Lupus with a cocktail of different types of vitimin's that are suppose to reduce or stop flare-ups. Now my son is 20mths I do not feel as unwell as I did at the begining, the only part I find really unbearable is the pain in my ankles. I still worry about my son as again in this country the fact that at fetal stage my baby was diagnosed with IURG, in this country there is not follow up for that, but when reading about it on the internet IURG should be followed up, my son is still small for his age, he never cried as a baby not even when he had a dirty nappy or was hungrey, although he has found his lungs now and seems to be reaching the milestones although later then most other children, I still worry about him, I hope this helps and if you have any questions for me, feel free to send me a message.

Kind regards

Sharon