Hi, i recently found out I'm positive on cardiolipin and beta2 antibodies. I haven't got my second test done yet but I also have sjögrens syndrome and I've had two early miscarriages/chemical pregnancies only 4+5 and 4+6 weeks along.
my doctor tells me the treatment is aspirin and heparin from positive pregnancy test. I question it since my losses were so early. Will it really stop me from miscarrying in time?
I've read about prednisone/prednisolone to calm the immune system before pregnancy. Anyone have experience of that?
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Hi and welcome, your doctor does appear to have the right idea, can you tell me where you are located please? It will require very good team work between yourself and your doctor to help you with future pregnancies, and any questions about steroids must be addressed to him or her. I am sorry to hear about your losses and wish you well with any new treatments you try for the future. MaryF
Thank you. Yes I know it's the right treatment for pregnancy with APS , I'm just worried because my losses were so early and want to learn about others experience. I live in Sweden. I also lost my daughter 5 weeks old because she had heartblock due to ssa and ssb antibodies (connected with Sjögren's). I really hate my antibodies.
Please if you can get in touch with your doctor as soon as possible to have a very good talk about your options in view of your early losses. Best wishes to you. MaryF
I am going to talk to my doctor, but since this is not very common I think the experience might be poor and want to hear others experiences around the world, and from that I might present something new to my doctor. I just want to do everything right this time, couldn't stand another loss. Yet I feel "lucky" that my early losses were so early, now when I know about my antibodies and what they can cause.
Hi, sorry to hear about your losses. I had 3 miscarriages before becoming pregnant with our daughter (who is our 3rd child, no problems with the others) - 1 was at 6 weeks and the other 2 were at 5 weeks like yours. After the 3rd miscarriage & diagnosis I was put on heparin (Clexane) daily because of my neurological APS symptoms & unsuitable for warfarin as trying for a baby. I became pregnant with our daughter 2 months later - she is now 2 years old - & I am still on Clexane! I live in Botswana but had a German gynaecologist & a SA rheumatologist who diagnosed me. I see Prof Khamashta once or twice a year and will remain on Clexane until I am living in a place where I can transfer to warfarin.
If you have APS symptoms apart from in pregnancy/miscarriage then you need to see an APS dr to get treatment for them anyway & you can discuss the chemical pregnancies then.
It kind of confuses me even more, and don't know what to do. But it seems like it worked for you with full time heparin (that's what clexane is if I'm not mistaking?)
What kind of neurological symptoms did you have?
Does anyone know how to get in contact with someone who's specialised in APS and early pregnancyloss?
I am in a similar situation. 2 early m/c's at 6.5 weeks. Since then I was diagnosed with APS and am currently 5+ weeks pregnant. I started aspirin before conception and Lovenox at bfp. So far so good. Just taking the aspirin really changed my monthly cycle (without getting too graphic) so that alone made me feel more confident.
Some people start Lovenox after ovulation. My doc said that wasn't necessary for me, but it is for people who have high levels of antibodies outside of pregnancy. If this pregnancy doesn't work out I will request to do that next time.
I have also read some interesting articles about how Lovenex suppresses the "compliment" part of the immune system in addition to being an anticoagulant. I think this was a coincident but they have found that it offers some protection against antibodies. If you are interested I can send you links.
I understand feeling lucky to have early losses- they are hard enough and I am terrified of a late loss. I just keep telling myself to be brave and having a baby is worth the struggle. This pregnancy does feel different so I am hopeful.
Congrats on your bfp, i really hope the treatment works out for you!! I'm sure it will since you have a good feeling! I know all about those bad feelings.
So you took the aspirin through the whole cycle? Maybe I should start with that, can't hurt.
I don't know about my levels at all... My rheumatologist will call me next Tuesday. Long wait will try to get hold of someone else to talk to tomorrow. I'm so worried because I'm about to O and worried I would need treatment sooner.
Hello, I have had three chemical pregnancies with 4 and 5 weeks. With two of them I was on baby aspirine but it didn't work. With my last pregnancy I started 40 mg of clexane once a day at 7dpo and baby aspirine after 6 weeks and I had a healthy full term pregnancy. I also had two second trimester losses and one misscarriage at 8 weeks. So clexane really was the only reason i had a good pregnancy.
My doctor told me to start the asprine after seeing a heartbeat on my first ultrasound. I dont know why that is. But she has done allot of research in APS pregnancies, so I think she knows what she is doing.
Yes, I take baby aspirin through my whole cycle. Many doctors recommended that to me even before testing positive for APS since it seems to help some people who have recurrent m/c's. I would tell your doctor if you decide to take it but it is something you could do now if you are trying to conceive right away. My hematologist stressed to be sure to take it everyday when we were TTC. I am of course not a doctor so can only share my experience.
Thank YOU for sharing those links, this is the info I've been looking for. Now I feel much more positive, really! Just hearing about all your stories in here, I felt so alone and I'm so happy I found this forum by a coincidence!
If you want to, keep me updated on your pregnancy! My fingers are crossed!
Sorry for your loss. It is so difficult, for me i think early Clexane was the key. I had a still birth and two early miscarriages plus 3 years of not getting pregnant and consultant thought I had had many early losses in that time. I took Clexane while TTC and fell pregnant straight away and had a normal healthy pregnancy. Not a coincidence! It is a miracle drug as helps the pregnancy have a good implantation. Good luck x
I have had a similar experience. The day I found out my BFP and went straight to my GP who couldn't give me the Fragmin my Rheumatologist consultant had recommended if I got pregnant. Had to go to the hospital and they gave me 30 days worth of Fragmin.
I have Raynauds, APS with anti beta 2 glycoprotein antibodies and a weak positive ANA test. Oh and several years of 'Unexplained Infertility'. With sjögrens I'm guessing you also have a positive ANA test?
After having 1 chemical at 5 weeks and a miscarriage at 7 weeks I was anxious and went to have a Beta HCG blood test the next day which showed negative I had only taken 2 doses of the Fragmin at this stage and the bleed happened 4 days later.
I then went on to have a hysteroscopy with implantation cuts (an operation that has proven to increase embryo implantation rates) in the following month and then to try again naturally the following month. Since I had the Fragmin I started to take it 5 days after ovulation and continue until a period/positive test. I had a positive test and I'm currently 8 weeks 3 days pregnant and taking Fragmin all that time. I also started to take 40mg of prednisolone from the positive test day and 5mg of folic acid. I had a scan at 7 weeks which showed the baby with a normal heartbeat. So far, this has worked for me. This type of protocol sometimes happens in IVF clinics, but after embryo transfer. Some clinics even start at LMWH at the start of the cycle. For my last (and unsuccessful) IVF the clinic protocol was to start LMWH on the day of planned pregnancy test day, which I know for me was too late.
Taking LMWH during an IVF cycle is seen as acceptable but when trying naturally it's not, this is mainly because your Rheumatologist is not a fertility specialist and doesn't want to get involved in your efforts to conceive. Likewise, fertility specialists are not really interested helping you to conceive naturally (apart from giving Clomid which is drug which regulates your hormones) and most (in the UK) don't believe in any stronger immune treatments such as IVIG/intralipids/neupogeon and will only really suggest LMWH, aspirin and prednisolone (max dose 25mg).
Fortunately for me, I went to a Clinic in Greece for my hysteroscopy and brought back prednisonlone (40mg) & folic acid as I was due to start another IVF cycle with them if I hadn't have conceived naturally. In this clinic they take great care over any immune related issues and view infertility and miscarriage together as infertility due to implantation failure is really a form of very early miscarriage (the uterine environment becoming hostile to an embryo due to immune issues).
I can't say whether the protocol I'm on at the moment would work for you as it was put together by the clinic in Greece. What treatment are you taking for sjögrens? In some women, taking Hydroxychloroquine has shown to prevent miscarriage.
Thanks for sharing! I know about the clinic in greek, I've heard about many people who had problems with implantation and miscarriages going there with positive results. I've also heard they put almost everyone (depending on problems of course) on prednisolone and that's why I had this question from the beginning. Now after reading all the answers in here many seems to be helped with "only" aspirin and most of all heparin. A doctor is gonna call me this week and I'm very anxious to see what she has to say about it. I hope I wont have to struggle for geting heparin earlier then bfp.
I just recently got diagnosed sjögrens, my reuma hasn't said anything about ANA, but I've got the ssa and ssb antibodies. So I already have a risk of the baby developing complete heart block. My DD I gave birth to in april 2014 had it and got a pacemaker when she was 2 hours young (they took her out with emergency c section, didn't know anything at all before). That's how I got my diagnose, wouldn't know about my sjögrens otherways, and problably not about the cardiolopin and beta2 antibodies yet either. I'm not taking any other medications.... I know I have a very complicated history and all this have happend in less then a year Luckily I also have a daughter born 2012 with no complications at all, now I know she must be a miracle!
Fingers crossed your pregnancy goes well, please update if you want!
A chemical pregnancy is simply a miscarriage that occurs very early on in a woman’s pregnancy. Often, this is because a woman was able to obtain a positive determination of pregnancy from a test before her period typically occurs. As a result, the miscarriage will occur at the time of a woman’s period before a heartbeat is seen on an ultrasound. More info about chemical pregnancy read here: motherhow.com/why-chemical-...
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