Lupus and IVF

Hi all Looks like I’ve potentially got lupus Just waiting to be referred to rheumatology before starting my next transfer (will be my 5th) Had the tests done as have recurrent implantation failure Just wondering does anyone have lupus and if so did you do anything in particular during ivf? Was it steroids etc? TIA xx
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Sorry to hear this, I don’t have experience of lupus but I just wanted to ask what test you had to potentially have lupus? I also suffer with recurrent implantation failure x

@Rubi I had that Alice, Emma and era testing (I think that’s what it’s called!) for reference there is no other ‘reason why this has happened so had to dig a little deeper!) have you had any tests? Xx

I’ve had 4 ivf transfers, 2 egg retrievals, both cycles responded differently. After my third transfer, I had an immune panel done which picked up a positive ANA (which can be an indicator for lupus but not necessarily as healthy people also can test positive) I then had tests done to check for that but they said everything was fine, so still had no answers. My last ivf transfer I was given clexane and steroids as an add on in case immune issues were the problem but that was a bfn. I then went to an immunologist who found I had high natural killer cell activity and possibly my body rejecting the embryos, so I did 6 cycles of letrozole alongside aspirin, steroids, trigger shot etc. they did find a polyp in my uterus on my first cycle so I had to have surgery to get it removed and thought that would be the answer but still all 6 cycles failed 🙄 so I’m not convinced about steroids working for me unless it was an egg quality issue. I have no idea 🤷🏻‍♀️ although my embryos were good grades🤷🏻‍♀️

To cut a long story short, I have no clue where to turn next lol. I’ve never had era Alice etc done so maybe I need to look into that, it’s just hard as i keep getting told nothing is wrong 😑 do you have symptoms of lupus? Xx

I’ve just had the immune screening done & they also found ANA (which can be an indicator) apparently you can be healthy & not have the deceases that ANA is linked to, Dr just said my immune system is overactive n could be attacking the embryos. I was also offered level 2 immune screening to look at my killer cells but Dr said that would also point to steroid treatment so it’s pointless me taking them tests. I’m positive for sticky blood so next treatment would be heparin (blood thinners) which can also surprise the immune system a bit. So going to try & do that instead of going straight on to the steroids. But before I do anymore treatment I’m doing the EMMA, ALLICE & ERA tests to see if they shed anymore light on anything. After that I dunno what to do except try the steroids but I really didn’t want to with the massive list of side effects they have x

*suppress the immune system

@Blonde Peanut you’ve had a really similar history to me it seems. I hope it works for you 🙏🏼 the steroids in all fairness were okay for me, it was just the lack of sleep I struggled with as I felt like I had so much energy on them so was buzzing day and night lol. But hopefully you don’t need them! I will look into the Emma:/ Alice tests - is that something your ivf clinic recommended based in implantation failure? And does that involve the endo scratch? Or is that something else 🤷🏻‍♀️

@rubi this is what I thought reading your profile, it’s nice to hear from someone that’s had a very similar journey. I’m not sold on the steroids yet I’m feeling like they might be my last resort step, husband doesn’t want me to go on them cos a family member had a bad experience with steroids causing extreme depression & black moods. I think the EMMA & ALICE check the bacteria in your uterus to make sure it’s all the good kind & not another thing that could be killing the embryo. The ERA is a biopsy to check what’s the best time to put your embryo back for implantation. I dunno if they call it an Endo scratch dunno what that is. Yeah this is what my clinic suggested after having failed transfers. Just seems to be one problem after another. Only other thing I haven’t had is the laparoscopy to check for endometriosis, didn’t think there was any point cos I don’t feel like I have severe periods. But a friend who’s also had ivf thinks I should check anyway…..have you had that? X

@Rubi oh rubi I’m so sorry you’ve gone through all that with no positive outcome, but don’t give up you’ve got this!! Erm I don’t think I have, I’m double jointed which can be a symptom and have a achy back but that’s clutching at straws and I’m a nurse so it comes with the territory 😂 Defo look in to that though, or maybe try a different clinic? Have you heard of that clinic in London which specialists in implantation failure/miscarriage? I think it’s called CRP? Xx

@Blonde Peanut I’ve not had that either but my consultant said he didn’t think there was a need to as I don’t have symptoms? But sometimes you can have silent endo can’t you? Or so I’ve heard! I’ve not had an endo scratch either! I’ve been referred to rheumatology now before I can start any treatment so I defo think I’ve got lupus (my blood results in July were 44 and in oct 315- over 27 is abnormal) so just hoping it doesn’t actually affect my life alongside this rubbish fertility journey I’m unfortunately still on😩

Oh Im sorry I hope it all goes ok with rheumatology and hopefully this could be your answer? It really is rubbish not having answers but maybe you’re getting closer to some answers finally 🤞🏻I actually went to CRP after my ivf journey, spent like £3k on further tests and that’s when they found I had overactive nk cells. So it was advised I try letrozole and do ovulation induction (I didn’t want any more ivf at this point) so I had to go in for scans, had aspirin, steroids, trigger shot and cyclogest and did 6 cycles back to back which was intense and these didn’t work either. I recently just left them in sept and on a break now 😓 I’ve also wondered about silent endo! But I’m sick of just having to do my own research and paying for things, and getting no answers. I read endo scratch can help produce a response which can aid implantation but it’s to be done before ivf and I don’t know if I want to go down the ivf route again xx

@Rubi oh I’m so so sorry you’ve been through all this and waiting on the answers, but I really do believe nothing is ever unexplained, there is an answer to what’s happening but I also understand it’s bloody hard and painful to get to that answer! Plus expensive!! Please keep me informed xxx

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