Recurrent miscarriages

[Esmes2013]

Hi, I am looking for any information that may help my situation, I have had 4 miscarriages since Feb 2015, all first trimester and have had one test so far that indicates I probably have Hughes Syndrome, although I am just waiting to have a further test after 12 weeks. I have been told I can carry on to try to conceive again and once confirmed, I will be put on twice daily clexane injections, aspirin, progesterone and hcg injections. My concerns are whether I should be prescribed anything whilst trying to conceive rather than starting any treatment once a pregnancy is confirmed? I would be most appreciative of any comments/ experiences from anyone in a similar position.

[MaryF Administrator]

Hi there and a big welcome, sorry to hear about your losses, this is very common and many people on this site have had a similar experience to yours. Which hospital are you under, as it certainly seems as if they now know what they are doing? We do have a list of recommended specialists in the UK. Treatment normally commences when somebody is pregnant, and of course some people have Hughes Syndrome/APS causing problems even when not pregnant. Please do use this forum as much as you like to learn about the condition and also have some support.

Please do have a good look through our charity pages: hughes-syndrome.org/ and I also enclose a film: youtube.com/watch?v=V3J8BLk...(Not working as expected?)

MaryF

[Esmes2013 in reply to MaryF]

Many thanks, I have found the website very helpful in explaining the condition. I actually underwent a sterlisation reversal last November and remained under the care of my consultant who is based at Royal Oldham. I was sterilised in 2001 at only 26 years old after having my son in 1995. I had no issues during that pregnancy. I have been frustrated as of course the old cliche is only now after several losses and the emotional rollercoaster of each one, I seem to be getting noticed and tested accordingly. Thanks again

[MaryF Administrator in reply to Esmes2013]

This sounds very promising, if you are in rounds of testing, make sure they look at your Iron (Ferritin), B12 and also vitamin D and also your Thyroid, best to leave no stone unturned! All the best. MaryF

[SjogiBear]

Sorry to hear about your miscarriages. I had a history of early miscarriages too and was very lucky to be referred to the Miscarriage Clinic at St Mary's. As Mary says, it sounds as though you are getting the right tests and treatments. What have your doctors said about taking anything prior to getting pregnant again? It's probably best to follow their advice as there is a lot of conflicting information on the internet. I just tried to get my body in the best possible place to start another pregnancy so I guess there would be no harm in doing everything towards that. Have you had any other symptoms apart from the miscarriages? I suppose that would also influence whether you need any treatment prior to conecption. At the time for me this was the only indication that I had Hughes and so I didn't take anything until I got pregnant, however, some ten years since my last pregnancy I do take daily aspirin but no other anti-coagulants. Everybody is different so in your position, I would be led my my medical team. Hope this helps a bit.

[Esmes2013 in reply to SjogiBear]

Sorry to hear you also suffered early miscarriages and thank you so much for your reply, my consultant has said he would start all treatments as soon as I got a positive pregnancy test but then you are right there are varying stories and advice everywhere with opinion being divided on taking aspirin/ clexane whilst trying to conceive. My last pregnancy I took a daily aspirin, off my own back completely as I was not even diagnosed then, and got a little bit further along before miscarrying. I am now hoping with the result and the support from the early pregnancy unit my next pregnancy will be successful. I am thankful I can conceive of course as so many ladies struggle with that but the ongoing losses are taking their toll. I was diagnosed with Reynauds which I think has a link, many years ago, I am interested in any potential genetic links also as my father is on daily warfarin and my mother suffers from auto immune disorders. I presume with your post you eventually managed to manage a pregnancy alongside the Hughes?

[SjogiBear]

I really hope that your next pregnancy goes well for you. Yes, I was lucky to eventually get pregnant and carry my baby to term successfully. I was one of those who did also have problems conceiving so it did take a long time to even get pregnant again. I only took aspirin through pregnancy too, no clexane or heparin but I think having the support of an early pregnancy team made a huge difference: I was scanned every couple of weeks right from the pregnancy test onwards and did have a miscarriage scare at 9 weeks when I was convinced my baby had died as I bled quite a lot. I was diagnosed as having had lupus since childhood during this time and now also have Sjogrens Syndrome. I never managed to get pregnant again but am blessed to have my daughter who will be 10 later this month. I'm now on aspirin and hydroxychloroquine - from what you say about your parents it does sound as if autoimmune disease is in your family and as you say, Reynauds is also autoimmune. Do you know if you have the anti-Ro antibody as well as antiphospholipid antibodies as this can also be implicated in miscarriage as it causes foetal heartblock?

[Esmes2013 in reply to SjogiBear]

Hi so happy you managed to have your daughter! I was not aware of that antibody so I will ask my consultant at my next appointment thanks for the info !

[dawnita1961]

I had to have progesterone inj. up to 6 mos with my oldest son after also having 3 miscarriages. After that, they monitored my bloodwork weekly to make sure I had high enough progesterone levels. I ended up going 3 weeks over due with that pregnancy. My 2 other pregnancies after that one, my progesterone level was fine. In my case, the progesterone did make the placenta and umbilicus grow extra...and I had to have a c section because the baby was wrapped up in the cord. My doc was awesome about giving me good support emotionally as well as physically.

[Kbjp]

Esmes, I am so sorry for your losses! I had three miscarriages last year. A few weeks into my 3rd pregnancy, which started exactly a year ago , I went to the ER with a lot of big blood clots in my lungs. I am lucky to be alive! I have permanent damage to my lungs, and I'm just finally starting to feel better after a year. I have decided to go the adoption route because I can't go through another loss, and because my body has been through too much already. I was not diagnosed with APS until about two weeks ago. My first lupus anti-coagulant was positive, but when I went off blood centers the second one was negative. I started having joint pain recently and went to a rheumatologist for more testing, and they discovered the positive anticoagulant and out me back on blood thinners, this time forever. Sorry that's a bit off track from your question. If you are trying to get pregnant, from my personal experience I would recommend you start the blood thinners first. Or, if you have time, wait a few months until you can test for APS again. To give you an idea how quickly it can happen, I had A day 3 eve to transfer on 10/10, got positive on a pee stuck on about Oct. 17 and by Oct. 26-27 I was feeling breathless. My doc said it could be a normal early pregnancy symptom. On November 11 I went for an ultrasound and mentioned I was getting over a cold and was coughing up mucous with streaks of blood in it. He recommended I see my PCP, but he was busy. I went home to lay down, and I heard crackles/rales, so I thought I had pneumonia and went right to urgent care. They called an ambulance. But I walked around with blood clots in my lungs for two weeks before that. I am just sharing this so you will know that not treating it could really mean risking your life. Good luck! I am so sorry you are going through this!

[Esmes2013 in reply to Kbjp]

Goodness that must have been so frightening for you ! I totally respect your decision my last miscarriage made me very unwell I had just tested positive on the first APS test and my left arm and face went totally numb during the physical loss I was petrified! The nurse I spoke to said it was probably unrelated to the loss but I know myself it was I had very stupidly stopped taking aspirin and think I had some sort if event. I thank you so much for posting and I am in aspirin now I think I will have one more go with all the supportive meds being offered but if unsuccessful I will give it up it's too much of a roller coaster emotionally and physically ! I sincerely wish you all the best on your journey and hope we both end up with little ones to love x thanks again x

[Kbjp]

Sorry, typos, and I can't seem to edit from my phone. Blood thinners not centers, and embryo transfer.

[Hopingforababy]

Hi there, sorry for your losses. You may have already seen my story. I've had a successful outcome after much heartache after being on clexane while trying to conceive. The official line in this country is to wait until a positive test - I think this is because clexane is expensive for the NHS but Clexane helps a successful implantation and getting the pregnancy off to a strong start. I saw several specialists and this advice was given by a haemotologist as listed on the website at Addenbrookes in Cambridge. Aspirin can cause miscarriage so best to avoid while TTC. The blood supply to the uterus has to be optimum and clots kept to a minimum. I had clots all over my uterus every month which caused infertility. As soon as my blood was being thinned I fell pregnant straight away and had a normal pregnancy - in my view clexane is a miracle drug. Everyone is different though and this disease affects people differently e.g some need steroids and progesterone etc in pregnancy. I think it depends on the antibodies you have. I have the lupus antibody but not the other two. Clexane blocks the lupus antibody so worked for me. I have done a lot of research on this disease and spoken to so many specialists but everyone is different. Good luck!