Diagnosed with APS

[Mercury363]

After all the transfers, surgeries and treatment i have been diagnosed with APS.I am still waiting for a proper chat with my own gp but have had a referral to rheumatology. This obviously explains my hydroxichloriquine, prednisone and need to tacrolimus in my transfers but there isn't much information online about how this is managed outside of ivf for fertility.

Has anyone been diagnosed with this and had a natural bfp? What treatment or meds did you take?

At least I have one factor as to why I can't get pregnant naturally (could of course be many and others) but this feels like a course I can follow even though our ivf run is finished. Any advice?

[Endofitall]

I am so sorry it’s taken so long for you to get some answers and that you can’t now take this into further IVF. I would be very angry and upset about that.

Can I ask how you’ve been diagnosed? I have positive Cardiolipin antibodies on two samples 12 weeks apart but I’ve been told because I haven’t had a blood clot (DVT/PE) or 3 miscarriages (I have had one miscarriage, and recurrent implantation failure, as well as an ectopic pregnancy but that’s by the by I guess for this) I don’t meet the definition of APS? I do have other autoimmune conditions too (coeliac, thyroid, as well as endo and asthma/eczema/allergic rhinitis).

I now get prescribed Clexane 40mg from a positive test when trying naturally or from post egg collection in a IVF cycle. When we conceived naturally it was sadly ectopic but I don’t think that’s the antiphospholipid antibodies fault.

Really hope you get some answers soon xx

[Teddy1979]

Hello 🤗. I have tested positive 3 times with 12 weeks gaps between. I had 1 miscarriage and 4 implantation failures. I was referred to rheumatology and hematologist and they tested for all sorts of other autoimmune but I don't seem to have any. Because I don't fit the criteria as endofitall said no event of blood clot and only 1 miscarriage and implantation failures I am only treated if positive test or during IVF. There's a website you can get some information aps-support.org.uk/When I asked the rheumatologist and hematologist about outside pregnancy/IVF they said because I don't have any other autoimmune conditions just the usual healthy lifestyle habits to be followed.

Fingers crossed for the rheumatology appointment, and raise your concerns about treatment outside pregnancy IVF. Even though people we are sharing our own perspectives you have your own unique situation. So read if you want the info from the internet but please don't worry, because we are going through the challenging journey we are in a mode , at least I tend to be, to be overly vigilant and worried. You are doing your best ❤️

[DianeArnold Partner Nurse Fertility Network UK]

Hi. I know that tacrolimus is usually reserved for preventing transplant rejection, so they must think it can prevent embryo rejection. Pretty strong stuff, so all the best with this. Diane