Autoimmune conditions, NK cells, recurrent miscarriages?

[Daniki]

Hey ladies,

Just wondering if anyone with any auto immune conditions is having trouble conceiving or recurrent miscarriages?

My first pregnancy in 2020 was successful and I had my DS in April last year.

In July we decided to try again and I got pregnant straight away but miscarried at 8 weeks. I got pregnant again next cycle and miscarried at 9 weeks.

Iv been getting acupuncture and the lady ,who was also a nurse for 20 years , mentioned about natural killer cells and how in some people they can actually attack the fetus as if it's a foreign body and maybe that's what's happening to me? I have ulcerative colitis so my immune system is already out of whack.

Thinking back to my first pregnancy I was actually on steroids and humira for the most part, definitely the first 20 weeks anyway, so maybe that's why it was successful?

Has anyone been through anything similar and has any success stories? I'm losing all hope and can't go through another loss, I only miscarried last week and it's really shook me 😢

Hi OP, sorry to hear about your mcs. I have Lupus SLE and have had 3 MC at 7,8 and 20 weeks. I ended up being given aspirin 75mg as soon as I got my next bfp and progesterone both until 12 weeks the next time I got pregnant. The doctor also prescribed me high does folic acid until 12weeks and I've since had a pregnancy to term. I had to go to a private doctor because my GP refused to give me progesterone or get my levels checked.

High dose*

My sister did and she has had bad eczema all her life

i had one MC at a time when my skin was so riddled with psoriasis that looking back, I have no idea why I wasn’t hospitalised.

my only friend who has suffered this has autoimmune conditions - mainly hypothyroidism

I had 9 rounds of ivf to have my children, early mc from cycle 2, I was in my twenties/early thirties, it was unexplained infertility, I had high NK killer cells, we had success on cycles 7 and 9 when we used prednisone (a steroid used to dampen the immune system, apologies if you know this)

As it turns out I had undiagnosed coeliac disease all the way through, didn't find out until afterwards, I had had stomach issues and anaemia since I was young but the antibody tests came back negative for 15 years, eventually I got another autoimmune disease aged 39 and one of my kids got tummy problems so I was eventually diagnosed coeliac after genetic tests and duodenal biopsies. I'm convinced that had I been diagnosed earlier before trying to conceive we wouldn't have had the problems we did.

@Daniki I'm really sorry for your loss, I also wanted to say I only had to take the steroids until 13 weeks, your situation sounds very similar to mine.

Thanks ladies! The consultant did mention I could go on progesterone when I get pregnant again but I would have to have a scan first and see there a heartbeat before getting it. My GP won’t prescribe it as he isn’t too sure on the protocol. I will mention about the steroid aswell hopefully they will listen to me and not palm me off!

I'm watching this with interest. I have Ankylosing spondylitis and was also on humira. I stopped taking it when I found out I was pregnant. This is my 1st pregnancy and I'm currently 5 weeks. I've also been wondering if there is a link between autoimmune disease and NK cells.

I feel like this will be an uphill battle to get medication, in the EPU they kept saying my GP would have to prescribe it even tho I asked the consultant after my last miscarriage.
You don't even get to see a consultant until after 12 weeks so that's too long to wait as I miscarried at 8 & 9 weeks. 🥴

Congrats @LBF2020 ! Hope all goes well in your pregnancy. Did doc recommend you go off it or did you just want to?iv just emailed my IBD nurse to see can she help but I feel like they won't 🙈

If private treatment is an option there are doctors who specialise in this including Dr Shehata. There are long running threads on here about immune issues where people share their experiences of treatment. I would say the majority of people on those threads eventually get their BFP.

Their sticky bfp I mean

@Twinklenoseblows I did actually come across one of them actually! I'm Irish tho so no access to that doctor I seen a lot of them talking about! 🥴
Wouldn't even have a clue where to start with private doctor here. The miscarriage clinic in my maternity hospital only sees you after 3 miscarriages which is harsh I feel 🙈

@Daniki I rang to let the team know I had stopped (I just assumed that was what I had to do) the specialist nurse said I could actually continue to take it and stop in the third trimester. She also mentioned that the increase in estrogen can help alleviate symptoms. I do have enough injections to get me through to 12 weeks so I wonder if I should continue with these (even though I've been off for a while?)

I also have a Prolactin secreting tumour which I think set off my anky spon. Since the tumour has been treated my back has been a lot better. Now I'm pregnant I have had to stop the medication for that too 😭 I have been booked in to antenatal clinic with my endocrinologist.

I do really feel for you, it's so hard to know what is best and I'm sorry for your loss. I have found the specialist nurses really helpful, so it's definitely worth checking with them.

@LBF2020 hard to say but defo worthwhile checking with your specialist anyway! It’s so hard to know what to do, I’m finding it very hard to deal with the anxiousness of where to go next or what will happen with a next pregnancy.
we’ve decided to stop trying for 3 months and going to give these holistic medicines the lady I’m seeing recommended. I don’t normally pass much heed on holistic remedies but can’t see the harm!

@Daniki Hi, after my first miscarriage at 21 weeks the autopsy found that I had antinuclear antibodies and may have contributed to the mc, I was told that during my next pregnancy I would be given aspirin from 12 weeks. I found out I was pregnant again but mc at 6weeks, I then went to my GP but they said they wouldn’t give me anything earlier then 12w because that’s what had been stated by the consultant. But I went to a private clinic and been told they’d put me on aspirin progesterone and a low weight heparin as soon as I get pregnant next time. I hope that helps? My GP wasn’t to helpful but I think going to a private clinic for advise gave me hope

Progesterone from heartbeat is too late! I had to take it from ovulation. After three MC finally have my beautiful rainbow baby. Like a PP I had to take high dose folic acid, aspirin, progesterone and I also took blood thinners. Please find info on progesterone on Tommy’s website and show it to your GP.

@Th10 I'm so sorry you had a loss at 21 weeks that must of been so hard 😭 I feel like that's the same route I'm going to go down that I won't really be listened to and my GP already has said he's not too sure on the protocols so he's not comfortable prescribing which is fair enough. Did you go to a fertility clinic?
I was thinking of starting to take half dose of aspirin daily anyway without a prescription!

@Th10 I had the same issue and was also exactly advised of this. I got the progesterone from a private place too.

@AllIwantforChristmas22 yes that's my fear that it will be too late 😢 iv emailed my maternity hosp to see if I can meet someone from the miscarriage clinic so hopefully hear back but it's usually from 3 miscarriage you're referred there. Glad to hear you've got your rainbow baby 🤗

www.bmj.com/content/375/bmj.n2896

news.sky.com/story/amp/more-than-8-000-miscarriages-could-be-prevented-each-year-after-approval-of-hormone-drug-says-charity-12477209

@Daniki the waiting list for miscarriage clinic is very very long too. I waited 6 months for my first appointment which was a phone call!! Thankfully I could cancel it as I was pregnant with my rainbow baby. I encourage you to get progesterone prescription before you fall pregnant again. Also I took 100mg aspirin not a small dose, and high dose folic acid. You don’t need a prescription for the aspirin but for high dose folic acid. And obviously take another pregnancy vitamin too.

Hi,

I had 3 mcs and suspect an autoimmune condition/NK cells (but not confirmed). I had steroid treatment and progesterone in my fourth and successful pregnancy.

Have you seen this thread?

Immune/NK cells - pred thread 30 www.mumsnet.com/Talk/conception/4626382-immunenk-cells-pred-thread-30

An immense amount of support and knowledge on there

Wishing you all the best!

@AllIwantforChristmas22 im on 5mg folic acid and have been since my pregnancy/1st miscarriage. What dose were you taking? i’m going to pick up aspirin myself and just start taking it that’s what my acupuncture lady recommended also.
i emailed my (Gastro) consultant office also but not sure if they would prescribe anything but worth a shot!
think we’re going to take a break for a 2-3 months my heads all over the place still

@Daniki Thank you, I am so sorry for your loss too! It’s frustrating when you now know something can be done! I went to my GP yesterday, and they said it’s not until 3 MC that they refer to the Recurrent MC unit. I’ve booked an appointment with the Recurrent MC Clinic in London, it is expensive, but its given me hope, but no availability until January. I hope all goes well for you!

Hi, how have you been since, are you trying/had C a successful pregnancy ?