Lupus anticoagulant

[irwine]

Hi girls,

After 3 early pregnancy losses, I had some blood tests done and have been told by my GP that the second blood test has come back positive again for lupus anticoagulant.

I have been told to start taking 75mg aspirin and also that my GP will refer me to a gynaecologist (but I am not sure how long I will have to wait because of Covid.)

I just wondered whether there is anyone out there who may have the same thing and/or any positive success stories? I've been worrying myself senseless!

Thank you so much xx

I'm sorry for your losses. I think they can also prescribe clexane injections as well for this. I think that this is one of the more treatable causes of recurrent losses, but I understand you feeling anxious. Have a look on Tommy's website, it will have more details.

I've had 4 losses and all my bloods came back normal. So I am under a private specialist now and been diagnosed with aggressive nk cells and following an immune protocol now.

Best wishes x

@VenusStarr

I'm sorry for your losses. I think they can also prescribe clexane injections as well for this. I think that this is one of the more treatable causes of recurrent losses, but I understand you feeling anxious. Have a look on Tommy's website, it will have more details.

I've had 4 losses and all my bloods came back normal. So I am under a private specialist now and been diagnosed with aggressive nk cells and following an immune protocol now.

Best wishes x

I am so sorry for your losses too, it's a horrendous thing to go through, and I hope things work out for you. Sending you lots of love and light, and thank you so much for such a kind message xxx

Hi @irwine I’ve had 2 early losses and was referred to Tommy’s by my GP. I too have tested positive for lupus anticoagulant. Tommy’s have told me that I will need to take aspirin from a positive test and i may also need to have heparin injections from around 6 weeks until after birth. I have also been told that given the right treatment and monitoring they don’t see any reason why I wouldn’t go on to have a successful pregnancy. Can you not be referred to Tommy’s? My appointment didn’t take too long and they are an incredible team! I know it’s hard to remain positive but there’s so much they can do to help and I’m sure given the right treatment you will also have a successful pregnancy x

@Coxy88

Hi *@irwine* I’ve had 2 early losses and was referred to Tommy’s by my GP. I too have tested positive for lupus anticoagulant. Tommy’s have told me that I will need to take aspirin from a positive test and i may also need to have heparin injections from around 6 weeks until after birth. I have also been told that given the right treatment and monitoring they don’t see any reason why I wouldn’t go on to have a successful pregnancy. Can you not be referred to Tommy’s? My appointment didn’t take too long and they are an incredible team! I know it’s hard to remain positive but there’s so much they can do to help and I’m sure given the right treatment you will also have a successful pregnancy x

Thank you so much, I actually sent an email to Tommy's this evening to ask them for advice or help really. I think I've just scared myself that I won't be able to make a pregnancy stick, and it's all I am dreaming of. Knowing that there might potentially be an issue has really worried me, but thank you so much for your advice, I am so grateful. Wishing you all the best for your journey too and sending you lots of love xxx

Hi
I’ve also just been told the same thing
Will have to take aspirin daily and have injections daily throughout a pregnancy (should it happen for us - 3 years+ so not in a positive mindset atm!)

@Pepperlypue

Hi I’ve also just been told the same thing Will have to take aspirin daily and have injections daily throughout a pregnancy (should it happen for us - 3 years+ so not in a positive mindset atm!)

I'm so sorry to hear that, we are all in the same boat so thinking of you xxx

Hi, so I've had 6 losses and have just come out the other side of this, am currently 8 weeks now.
So your GP is slightly incorrect, they need to refer you to a recurrent miscarriage clinic, and it's ONLY a haemotologist who can prescribe heparin injections. Please don't get pregnant until you've been seen and given the go ahead, as I did this, thinking that they'd have to give me the treatment needed, but I wasn't seen in time and went on to miscarry again. As for time scales, I was referred in July last year to my current consultant, and was given the go ahead to try again on Christmas Eve.

@Ironytheoppositeofwrinkly

Hi, so I've had 6 losses and have just come out the other side of this, am currently 8 weeks now. So your GP is slightly incorrect, they need to refer you to a recurrent miscarriage clinic, and it's ONLY a haemotologist who can prescribe heparin injections. Please don't get pregnant until you've been seen and given the go ahead, as I did this, thinking that they'd have to give me the treatment needed, but I wasn't seen in time and went on to miscarry again. As for time scales, I was referred in July last year to my current consultant, and was given the go ahead to try again on Christmas Eve.

That's really helpful, thank you. May I ask if you were taking low dose aspirin before you got pregnant? I am and am nearly in my TWW. My GP told me to let her know as soon as, and if, I get a positive pregnancy test. She hasn't really told me about the next steps, and the levels of this lupus anticoagulant in my blood. It's so overwhelming. Huge congratulations on your pregnancy and I hope you have an easy ride from here on in. Sending you lots of love and light xxx

Sorry for the late reply. I am told to take 150mg per day of aspirin, regardless of pregnancy as APS can cause clots anywhere at any time even outside of pregnancy, as I'm sure you're aware. The heparin injections are only for during pregnancy as far as I know though. Feel free to ask any questions you have, I'll do my best to answer.

@Ironytheoppositeofwrinkly

Sorry for the late reply. I am told to take 150mg per day of aspirin, regardless of pregnancy as APS can cause clots anywhere at any time even outside of pregnancy, as I'm sure you're aware. The heparin injections are only for during pregnancy as far as I know though. Feel free to ask any questions you have, I'll do my best to answer.

Thank you so much, you're so kind. I've been told to take 75mg by my GP and I also contacted the APS charity who said that was the normal dose and to stick with that. I've now just started my TWW, I don't know how I'm going to survive it! I don't know what else I can do really. Hope you are doing ok and you are feeling ok with your pregnancy, thank you so much for your help and advice. Sending lots of love xx

@irwine I’m 1dpo today if you want some company for the tww xx

[quote Pepperlypue]@irwine I’m 1dpo today if you want some company for the tww xx[/quote]
Same as me, we are in this together xxx

@irwine yes definitely!
For once I’m not worrying about the tww
I’m feeling quite positive but we’ll see!
How’re you xx

[quote Pepperlypue]@irwine yes definitely!
For once I’m not worrying about the tww
I’m feeling quite positive but we’ll see!
How’re you xx[/quote]
I'm ok, but it seems to be the one thing that is constantly on my mind. I know there is no point worrying, but that's easier said than done! I'm trying to keep busy and do nice things. How are you doing? xxx

I’ve got really intense cramps have done since day after ov, I think it’s down to the clomid. I was given 3 rounds 14 months ago and only did two with no avail and was left to my own devices (no scans etc) so I had another round in the cupboard and thought why not. I’m in utter shock it actually made me ovulate! So I’m putting cramps down to that. Feeling okay, trying to be positive but not overly optimistic haha. Xx

@Pepperlypue

I’ve got really intense cramps have done since day after ov, I think it’s down to the clomid. I was given 3 rounds 14 months ago and only did two with no avail and was left to my own devices (no scans etc) so I had another round in the cupboard and thought why not. I’m in utter shock it actually made me ovulate! So I’m putting cramps down to that. Feeling okay, trying to be positive but not overly optimistic haha. Xx

Aww sending you love, that's great news that you ovulated so fingers crossed 🤞 it's good news from now! Being positive is good, far better than just being a ball of nerves. xxx

I think I’m gonna hold off testing until next Friday, which will make me 12dpo.
When will u be testing xx

AF is due on the 19th, so if it hasn't come by then, think I'll test on 20th. My GP said to let them know as soon as I get a positive pregnancy test so if I test on the sat, I think I'll be driving myself mad with worry all weekend! My appointment with the gynaecologist came through today and it's on 8 March, so I'll know either way what stage I am by the time I talk to them. I've been taking the lose dose aspirin, and folic acid and vitamin d. I just hope with everything that things start to go according to plan! xxx

Fingers crossed for you! I’m due on the 20th so planning to test on the 19th as for the same reason as you I have to ring gynaecology as soon as I have a positive test and I’d go mad if I had to wait 2 days to call!
I was going to take low dose aspirin throughout the tww but I have blood tests on the 15th to determine if I absolutely do have the lupus and sticky blood issues and I’m not sure if taking the aspirin will change my results (thus changing my care during pregnancy)
I’m a nervous wreck wondering if I should just take the aspirin just incase or wait until I have had my bloods then start. Xx

I have this. Was diagnosed after my second miscarriage. Was told to take aspirin and tinzaparin injections once I got a positive test. I did this for the third pregnancy but unfortunately miscarried again. This was tested and down to an anomaly so it wouldn’t have mattered what I had done. Fourth pregnancy and took 75mg aspirin again and the tinzaparin from a positive test. This was then upped to 150mg aspirin after 8 weeks or so. I also was prescribed cyclogest for the first 16 weeks (supposed to help recurrent miscarriages) and one course of metronidazole (5 nights cream/pessaries as a precaution against infection). I think the latter was around 8/9 weeks. This was all through the recurrent miscarriage clinic. I continue to take the injections, aspirin, folic acid, and vitamin D. I am now 26 weeks pregnant and fingers crossed all is fine. Normal amount of scans and ante natal appointments. The consultant will prescribe you the tinzaparin injections, it doesn’t need to be a haematologist, mine wasn’t. I now just get them on repeat prescription from the pharmacy. This is a very treatable issue and some people have it that don’t realise and still have healthy babies with no intervention, so please don’t worry. If I didn’t have to take the injections I wouldn’t notice! It’s impossible to know what caused the first two miscarriages, it could have been the lupus anticoagulant, or it could have been a genetic issue like the last one, or something completely different! It’s reassuring to know the recurrent miscarriage team will do all they can to help and I have been very impressed with them. We had pretty much given up after the third miscarriage, had a few months of relaxing, drinking too much and eating terribly, and then I found out I was pregnant!! Good luck with your journey, and make sure you make a bit of time for yourself and have a break if it gets too much. It’s so hard after experiencing loss and I still feel on edge about the pregnancy, but I can honestly say the lupus anticoagulant doesn’t really cross my mind as an issue at all!

@Grognonne

I have this. Was diagnosed after my second miscarriage. Was told to take aspirin and tinzaparin injections once I got a positive test. I did this for the third pregnancy but unfortunately miscarried again. This was tested and down to an anomaly so it wouldn’t have mattered what I had done. Fourth pregnancy and took 75mg aspirin again and the tinzaparin from a positive test. This was then upped to 150mg aspirin after 8 weeks or so. I also was prescribed cyclogest for the first 16 weeks (supposed to help recurrent miscarriages) and one course of metronidazole (5 nights cream/pessaries as a precaution against infection). I think the latter was around 8/9 weeks. This was all through the recurrent miscarriage clinic. I continue to take the injections, aspirin, folic acid, and vitamin D. I am now 26 weeks pregnant and fingers crossed all is fine. Normal amount of scans and ante natal appointments. The consultant will prescribe you the tinzaparin injections, it doesn’t need to be a haematologist, mine wasn’t. I now just get them on repeat prescription from the pharmacy. This is a very treatable issue and some people have it that don’t realise and still have healthy babies with no intervention, so please don’t worry. If I didn’t have to take the injections I wouldn’t notice! It’s impossible to know what caused the first two miscarriages, it could have been the lupus anticoagulant, or it could have been a genetic issue like the last one, or something completely different! It’s reassuring to know the recurrent miscarriage team will do all they can to help and I have been very impressed with them. We had pretty much given up after the third miscarriage, had a few months of relaxing, drinking too much and eating terribly, and then I found out I was pregnant!! Good luck with your journey, and make sure you make a bit of time for yourself and have a break if it gets too much. It’s so hard after experiencing loss and I still feel on edge about the pregnancy, but I can honestly say the lupus anticoagulant doesn’t really cross my mind as an issue at all!

Ahh thank you so much lovely, this is so reassuring and I am so happy that everything is going well for you now. Can I ask when you started taking the injections in your pregnancy? I'm taking 75mg of aspirin at the moment and the GP said to let them know as soon as I get a positive pregnancy test, but I'm really worried that when I do action will need to be taken straight away, otherwise I will lose it again. Do you take the injections yourself? I've been doing so much googling about this lupus anticoagulant and I am trying to tell myself that it is easily treatable, but I think I'm a natural worrier, so it's very hard not to worry all the time! Thank you for such a nice message xxx

@Pepperlypue

Fingers crossed for you! I’m due on the 20th so planning to test on the 19th as for the same reason as you I have to ring gynaecology as soon as I have a positive test and I’d go mad if I had to wait 2 days to call! I was going to take low dose aspirin throughout the tww but I have blood tests on the 15th to determine if I absolutely do have the lupus and sticky blood issues and I’m not sure if taking the aspirin will change my results (thus changing my care during pregnancy) I’m a nervous wreck wondering if I should just take the aspirin just incase or wait until I have had my bloods then start. Xx

Has any doctor told you to start taking low dose aspirin? If not, I would wait until you speak to a doctor so you can get an actual diagnosis and actual advice from them. I have heard of ladies being put on higher doses of aspirin than 75mg, so the advice might change for you too. Keeping my fingers crossed for you too, it's so nice to know that there are people going through the same thing- this whole journey can feel very lonely sometimes because no one ever speaks about the difficult parts or how stressful it can be! Sending you love xxx

So AF turned up yesterday. I feel so upset and disappointed. I feel like I'm doing everything by the book, and it's just not happening. After 3 early losses, I don't understand why I didn't conceive this month- after receiving a diagnosis and starting on the low dose aspirin. :( Xx

I'm sorry @irwine ❤️ I'm struggling a lot with this too. I know our diagnosis is different, but ttc after recurrent losses is so hard. Like you, it feels like we're doing things 'right' and it's still not happening. I broke down last week and had to take time off work. Getting af is really distressing too, I've had a lot of flashbacks this week.

Just wanted to come on to say you're not alone xx

Thank you so much @VenusStarr - that's really kind. Sending you so much love yesterday, I know what you mean about getting AF, it came out of the blue yesterday, I had no warning or anything and I thought I had a good feeling about this month, which shows how wrong I was! 😔 I hope you're doing ok, it's such a stressful time. I'm here also xx