Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

@Chickjen I’m okay, thanks for asking! Yeah I’ve been on the hydroxy for just over 4 weeks now & totally off the Pred - thank god! The withdrawals were awful 😞 not long until we can try again but the dates don’t line up - typical! I’ll ovulate just before the 6 weeks that Dr S recommends we take the hydroxy for so it’ll be more along the 9.5 weeks before we could try. But then test day for that cycle would be 3 days after we fly to America for a 2.5 week holiday so if it was positive I wouldn’t be able to get to the clinic for intralipids 😏 So we’ve decided to wait another cycle & enjoy our holiday without stressing/worrying (who’d have thought I’d be saying that 4 weeks ago when I was told we’ve have to wait 6-8 weeks 😂). Had a bit of a nightmare with my HCG levels dropping after my miscarriage too. On Tuesday I still got a positive pregnancy test & my HCG levels were showing as 18 in my bloods which is annoying given AF arrived on Thursday as expected so I thought they would have dropped to zero. My local EPAC will continue to monitor until I get a negative test just annoying having to pop to the hospital each week for 10 minutes for them to draw blood 🙈

Puppy is amazing 💙 he’s honestly brought so much love to our lives & it’s nice to be a doggy Mam! 😍 he was 16 weeks yesterday and is up to so much mischief. I’ve attached a pic of him walking along our windowsill this morning 😂

Aww I’ve got everything crossed for you 🤞🏽 Maybe it was implantation bleeding? Are you still getting positive test results?

@zoe16 sorry I can’t help! I went to see Dr S having not had any tests done at all so a blank slate really. Maybe you could email the clinic and see what they say? You’d likely need an initial consultation to ask him to review them anyway and if that takes a few weeks/months he may insist on re-testing. Not ideal & is costly but if I’ve learnt anything from being under his care & this thread - he likes to do things his way and be in control.

Hi all, hope you are all doing ok? @chickjen have you had any more bleeding?
@KittyKatSmile how are you feeling this week?

I’m on the prednisone now and started it at ovulation. I’m also on progesterone too and baby aspirin, 5mg folate. The pred has made me need less sleep about 5 hours because I’m out of melatonin. But all good and happy to see what happens.

I do suffer with mental health generally so I’m keeping an eye on the pred but honestly fine at the moment. Feeling so much better than 2 weeks ago. Finally feel like I’m getting the help I need so for my next BFP holding out more hope. The thought of a 5th mc is in my mind though but I somehow just feel better about everything.

Hello everyone,

I took a few days off the internet to recuperate after my D&C. I had the results from the karyotyping of the foetus and it was as I suspected healthy 😔. This 3rd miscarriage was so similar to the first that I am thinking that the first was healthy too. Slippery slope for my mental health. At least I know know that I really need to explore immune issues ( the only issue doctors have found is positive ANA but I have no issue with NK cells or thyroid etc). I was on 10mg pred and clearly it was not enough..

As you suggested I booked with Mr S. (End of October the first appointment in London! ), I have started the AIP diet and I am trying to reduce my cortisol levels ( aka not care about work issues that much).

Thank you so so much for your advice. I really thank you!

@KittyKatSmile
I am so so happy for you!!! You are giving me strength! 😍🤗🤗🤗🤗🤗 I am sure everything will be fine now!!

@zoe16 I have a similar issue with previous tests and Dr S. I have done about 90% of the tests he requests usually. His office said that as long as they are not older than 3-4 months he may accept them. I do not mind repeating NK cells as I did them 12 months ago but I did AMH and quite a few others 3 months ago.

Thanks @Naticle @Wishing5tar I’m waiting to hear from his office.

@MrsMargot I’m sorry you’ve had a third loss. I do hope you can find some answers to lead you to a successful pregnancy. I’m currently expecting my fourth mc as my recent scan wasn’t good. Like you my mcs are so similar to each other I’m now convinced it’s immune issues especially with my recent diagnosis of elevated NK cells. It also seems that pregnancy raises my tsh, so who knows what else is being affected. I don’t mind repeating older tests or do new ones I haven’t done but the recent immune tests were in early August so hopefully I won’t have to repeat those right now.

Oh @zoe16 I’m so sorry to hear that. I really hope it’s not another mc of course. @MrsMargot my last D&C was 2 months ago and I tried the next cycle (cp) then this cycle I’m
Medicated now and trying again. So we’ll see.

We will get there and be ok. Hang in there. We all have so much hope and help now with these protocols.

Thank you @Wewin . I am trying to be positive and recover so I can start trying again. By the way, how long did you bless after your D&C? It’s been 2.5 weeks and I am still spotting ever so slightly. I just want it to be over so I can recover body and mind.

@Wishing5tar he is adorable! 😍😍 have the hospital offered any suggestions why the level would take so long to drop? It must be so frustrating to just wait 😡
@Wewin I'm glad you are being looked after now, and have joined the pred club! 😁 still no bleeding but I do feel like when AF is about to start, I wish it would just hurry up and get over with.
@MrsMargot @zoe16 I didn't have any immune testing before seeing MrS but he did accept my NHS miscarriage tests and they were around 6 months old. I think that was AMH and blood clotting.

@MrsMargot I only spotted for a few days after my D&C- maybe a week. I know we are all different. I do know they were very thorough with it ensuring everything was removed. I then had AF mixed with a cp 5 weeks later.

@chickjen yes I’m rocking on the ‘roids now. All seems to be ok and I’ve had my melatonin arrive so I’m all good with sleep. I’m so sorry you think this might be another chemical. I pray it’s not. Are you doubling up your progesterone or anything?

@Wewin the clinic did suggest doubling up but I must confess I didn't, I was so convinced there was nothing to save. However still no bleeding so I have bought a clear blue weeks indicator for tomorrow to try and decide whether to go for the 6 week scan I already had booked at the end of this week.

Hi, I'm very new the mumsnet (as a commenter, I have read threads for as long as I can remember) I have joined as I've just found out that I have elevated NK Cells.

A bit of a back story. Im 28 years old and have 2 boys, 5 and 3, I had one miscarriage before having my first and one recently.

It took me over a year to get pregnant with my most recent miscarriage (which was in Feb)- to which I found out at 11 weeks that it had stopped growing at around 8 weeks and needed to have a D&C to have it removed. This broke me, and I have really struggled to deal with the loss, I have however still continued to TTC with no luck.

I was referred to the miscarriage clinic at Epsom hospital and found out yesterday that I have high NK cells and have been put on a treatment plan. I had no idea what these NK cells were so after scouring the internet for the last 24 hours I'm a little more understanding of them but confused of how they effect me. From most things I've read it causes miscarriage, but I haven't been able to get pregnant in the last 6 months. Can these cells 'kill' before implantation? Will the treatment plan even work for me?

Thanks in advance for anyone who takes time to read my post. X

Hi, I'm new here. I'm considering treatment with Dr Shehata after 4 unexplained miscarriages. I'm concerned about the costs however, and was wondering if anyone could advise on average how much their treatment plan with him is costing? And whether you knew this at the start or if the costs just keep mounting up?

Also, I live in Edinburgh and was wondering if it's even feasible for me to begin treatment with him? How often would I be expected to go to the clinic?

Thanks so much for any advice you can offer. X

@Wewin still in a lull waiting to see what happens. The waiting just makes it a lot worse, would rather know right away what’s happening. Have to have another scan to confirm viability or not.

@MrsMargot I too spotted for about 3wks after my d&c...right up until I got af I think. I’ve had 2mc since and bleeding was only a few days.

@MairMum18 Elevated NK cells can affect us in both ways, prevents implantation of embryo or attack embryo after implantation. In my situation it’s the latter because I get pregnant very quickly, usually on the first try but baby doesn’t grow pass 5wks. So yes your NK cells could be interfering with your implantation. What’s your treatment? Have you been advised to take medication at ovulation to aid in implantation?

Thank you very much @zoe16. It is so annoying. I did not know you can spot until your period! I asked the doctor and he is not concerned either so I am guessing I just have to wait...

@MairMum18 welcome. I agree with @zoe16. It can affect both. I too can fall pregnant very easily but the baby is not growing past 7 weeks and has bradycardia.

@WeeGi welcome too! I am going to see Dr S next month. It looks like the first consultation is £320 (less for the follow up appointments) and depending on the case you can pay anything between £1500 and £3500. Expensive but hopefully worth it...

@MairMum18, @zoe16 has explained it perfectly. Are you under Mr Shehata at Epsom?

@WeeGi I think there is a price list on his website. You would need to go for an initial appt, results appt, and then every 2 weeks from bfp till 12 weeks. It would depend on what tests you have had previously and your treatment plan, but be prepared for £5k. Have you looked at Coventry? They are doing similar plans I think and a little bit closer.

@zoe16 I think we are in the same boat. I conceive quickly and miscarry early. Every MC seems to get earlier and earlier. I have a 6 week scan booked for tomorrow but I really don't think there will be anything viable there. Clear blue is saying 3+ but my cheap internet sticks are getting lighter.

Hi thank you all for the replies, I'm very pleased (weirdly) that I've had this diagnosis. Especially if that's what's causing me to not implant. I was so worried that all of this medication was going to be a waste of time - though I was still going to push through with it anyway.

@zoe16 I have been given 25mg of prednisolone as well as progesterone pessaries to take from ovulation, then I need to take a pregnancy test at 10dpo, if negative stop and start again next month. I've been given 5 months worth of medication (the bag they gave me made me very overwhelmed I felt quite sick). Luckily I had my exemption card from my miscarriage so I didn't have to pay!

@chickjen yes I'm with Mr Shehata at Epsom. Think I'm quite lucky to be seeing him, as I've only had the 2 miscarriages. Was saying to my husband the other day that if I was never referred we would have never found out and would most likely never get pregnant again! I think it's silly that these tests don't get done out of the clinic on the NHS - seeing as so many people have been diagnosed.

For those who have got pregnant using the prednisolone, how many cycles did it take? X

@MairMum18
I became pregnant after 3 cycles of pred but then miscarried.
Hydroxy was then added and after about another 5 cycles I was successful.

@Chickjen keeping everything crossed for you today x

@MrsMargot it is annoying! I found my d&c somewhat traumatic, I don’t know if it’s because it was my first pregnancy or all the side effects from the d&c, I was in a lot of pain afterwards.

@Chickjen yes mine have been ending earlier and earlier which I guess is the body responding faster each time because it recognizes what is going on. Although in my case the embryo stops growing but I have to wait a few weeks to miscarry. However, I’m not sure if it’s the medications particularly progesterone which tricks the body that it’s still pregnant? I hope your scan pleasantly surprises you!

@MairMum18 sounds like your sorted hopefully it does the trick

Zoe abd Chickjen praying all will be ok.

With my four losses, they’ve been:
5 weeks
4 weeks
6 weeks (TMR D&C)
4 weeks

I usually get pg first try. This is my first cycle on prednisone and progesterone from ovulation. It was also a super ovulation cycle. I do ‘feel’ we’ve caught again on first try even with prednisone. Will keep you posted. I was worried it would delay getting pg but hopefully not. 5dpo today.

I took my first dose of humira on Monday (after almost crying at the price of it!). I've been waiting for the side effects to kick in, but none so far. Just fingers crossed it's working 🤞

@ginandtonicformeplease would you mind telling me how much Humira costs? I am trying to put together potential costs so I have an idea what to expect. I know it is expensive I just do not know how much. Thank you!

Yay @ginandtonicformeplease you found some 🎉 I honestly felt nothing at all after taking it, I was convinced I had messed it up and the injection hadn't worked, and yet my TNF cells more than halved. I know you are taking for NK but if it can zap one without side effects why not the other 🍀

@zoe16 yes I am the same, the baby stops growing earlier and earlier but the actual mc happens later and later 😕 Plus I've noticed far lighter bleeding than expected too. After the last cp it only really lasted one day. It's something I plan to ask tomorrow assuming it's bad news and I don't forget!

@Wewin fingers crossed for you, let us know how you get on 😀

@Wewin thanks, I do hope everything is ok and if not that we’ll fall pregnant on our first try and be successful with the new medication. What’s your treatment for NK cells? I’m seeing that it varies (Humira, lovenox, prednisone) and I’m wondering if I should have more medication. I just have prednisone, intralipid, progesterone and Levothyroxine. I plan to ask my doc if he thinks it’s worth throwing lovenox in too. GL I do hope you’ll report bfp next week!

@Chickjen I’ve noticed less bleeding too, probably because pregnancy is earlier and earlier and not much to pass?

@Chickjen thinking of you and hoping you get an amazing surprise. Which day is it again? Or don't say if you prefer not to (I could of course be less lazy and look it up myself!) Much love x

@MrsMargot It was £1,130 for two injections to be taken two weeks apart. After a MMC on the usual treatment (pred, intralipids, progesterone) the doctor gave me intralipids and then tested again for NK cells - they'd actually risen not fallen. I apparently come in the 10% of women who intralipids don't work for.

There's a national shortage of humira at the moment, so it was very much just find it where you can - usually places like Lloyd's online and Pharmacy2u stock it, but they can't get it from their supplier at the moment so i just had to suck up the cost rather than shop around.

Oh my god, oh my god, oh my god! There is a baby with a heartbeat! I can't tell you how floored I am, I was so so convinced there was no hope.
There is some bleeding near the baby so I need to double up on cyclogest and start nifedipine, whatever that is, so not quite out of the woods yet, but this is the furthest Ive been in about 2 years 😱