Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Sorry - I should have said trigger was on Monday 13th x

Ps. I'm sorry if that comes across a bit negative I'm really not being, I'm just trying not to get my hopes up and cover all my angles!

@hrtbrk2 totally understandable to try and protect yourself, I think the excitement of a BFP has been permanently spoilt for all of us here 😥 But Mr S says to test day 10 so he must be pretty confident of the trigger being out by then. I guess tomorrow will tell. If it's lighter then trigger or darker then YIPPEE!!!!! 🤞🤞

Did you test this AM or yesterday? If today then maybe wait 48 hours e.g. Monday as then the hcg should have doubled by then and you should see a line progression 😊

Thanks ladies - you're all so lovely - fingers crossed! Oh the wait! 🙄 x

Bad news ladies - very much a negative today, so it must have been left over trigger shot even after 12 days. I'm totally floored, I really started to believe this could be it. Why does this just not get any easier - it's so unfair sometimes the things that mess with out minds. I hate that we have to test so early

@hrtbrk2 I’m so so sorry 💔 life can be so cruel. Sending you a big virtual hug! Keep the hope, it will happen xxx

@hrtbrk2 I'm so sorry to hear that, what a cruel side effect of the trigger 😥 as if there isn't enough to deal with already 💐💐

Oh that totally sucks! I'm sorry @hrtbrk2. Be easy on yourself - especially as you were going on the clinics instructions. I'm cross on your behalf. Sending love xxx

Hey guys, hope you don’t mind me joining in - was after some advice.

Short summary:
Dd1 no issues - now 7
One ectopic and 2 mc’s - NHS wait was long for help (Wales). Read private research in 2015 and a private consultant prescribed preds, clexane and progesterone. This was based on research and not any results I had my general blood test results were fine.
Had son now 4
Surprise DD following our wedding - GP took pity on me and prescribed the meds again.

Fell pregnant in September. GP on holiday and couldn’t get meds through NHS. should have paid to go privately but I didn’t - I guess I thought I might be ok this time. Miscarried.

All blighted ovums.

I was going to do the NK test and then Covid hit and I was told it has not been reopened for private patients yet?

Have been seeing a naturopathic doctor. Did day 3 tests and my testosterone is high and fsh and lh wrong way round. Told it looks like PCOS and insulin resistance issues. Have been taking inositol and some vitamins etc that she thinks I’m deficient in. My diets a bit better than before but not great (eg yesterday I lost the plot and ate a bag of popcorn and half a pack of oreos) but generally I try to make reasonable choices.

The fertility services haven’t opened up here and to be honest it’s likely to be months before I’m seen and the consultant I’m getting referred to I don’t think I will learn anything from (from reading reviews on here). I’ve asked to referred to Coventry but because we are in wales and the health board has to contribute I’ve been told no until I’ve seen a welsh specialist and told they agree with referral.

I’m taking doxycycline atm as the private one I saw in sep said there was a current trial on this antibiotic and she said she would be happy to prescribe for me to take before trying again (we want to try this month as I’m not working much and am sole trader).

I have been told if I fall pregnant to take aspirin and progesterone but not clexane as my generic blood tests were fine and not preds because of Covid. My gut is though that this combination worked for me with my youngest two and I’m worried I will miscarry again if I don’t.

Just wondering what people’s thoughts are? If anyone has been in a similar position and what people that are under specialists are being told about preds in relation to Covid and early pregnancy?

Thanks xxx

Really sorry @hrtbrk2. Do speak to Dr S about it. It may have been a chemical pregnancy, so you conceived, but it didn't take. When I've had a trigger shot, it's been out of my system by 9 dpo (I tested to be sure).

@hrtbrk2 I’m so sorry, take good care of yourself. It is all so unfair.

@Lovemylittlebear could you me a bit more about the dosage and length of time of the doxycycline? Also, I read one study online that it was useful with a diagnosis of endometriosis, but couldn’t see any research that supported this if you don’t have endometriosis (which I don’t), although I think there is a current trial going on using this for recurrent miscarriage without endometriosis but I may be wrong?

I’m under Dr S. When I was pregnant through lockdown I stayed on Prednisolone but had to drop from 25mg to 15mg. I had a missed miscarriage although the baby must have died before I reduced so I don’t think it was related. For my next pregnancy they are adding hydroxychloroquine and said they would receive Prednisolone on a ‘case by case’ basis, although I think they are still prescribing but at the lower dosage of 15mg and you then had to shield. I think I will be in the Prednisolone still as I also take it to help with severe hypermesis. I’m a little worried about the reduced dosage though.

I’m so so sorry. That sounds awful and I really hope that you have good support and the consultant you are seeing is helpful.

The doxy is just 10 days course. Hypothesis is that some women have endometritis with no symptoms and possibly this causes miscarriage for women where the cause is not known. The consultant I saw isn’t specialised in this - she mainly specialises in IVF etc but she is lovely and reads the current research and said it’s worth a go. I wish I was under a specialist. I feel like I go a bit crazy reading all the research all the time and it would be nice for someone to say - this is what’s best in your circumstances. I also know I’m incredibly lucky x

@hrtbrk2 I'm so sorry, I was going to say the same as @Wireless77 cools it be chemical? I tested at 9dpo in Feb as was going on holiday and was a negative but I guess the trigger shot has different effects on us all. Hugs xx

Hi @Wireless77 @HoldingOn2Hope @NICK7nick7 @Chickjen @KtAgs thanks Defoe your support - I'm not sure on the chemical it was just so faint so I think you're right I'll ask dr s when I see him for my next scan - I'm going to make it clear that if he thinks it can still be trigger shot that it's a very difficult position to be in testing that early. In some ways I hope it was a chemical as it means something was going right but just not quite there and that would give me some hope. I'll see what he says and let you know as it could be worth all of those of us on SO knowing

I'm definitely going to test the trigger shot out though this time with some cheapies so I know when it's gone! I've spent today just feeling really foolish and angry but a gin and tonic and a good nights sleep and I'll be back on it tomorrow ready for the next cycle! x

@hrtbrk2 I hope today was a better day and yes you'll be ready to go again with a new cycle :) Has you letrezole dose been up'd?

AF has arrived for me, not as heavy as I thought it would be but headaches are horrible and I've cried about 20 times today! Glad I'm getting back to normal though x

Hi @HoldingOn2Hope yes new dose this month to 7.5mg and see what that does. My AF is taking its time this month to arrive though it feels like!

Glad you are getting back on the road to recovery - don't you worry about a good cry, I think it's the perfect way to purge out all those emotions to get a fresh perspective and get some strength to carry on!! X

Hi 🙂 hope you don’t mind if I join but I found this thread trawling the internet endlessly looking for answers and thought who better to ask than women unfortunately in the same boat!
Brief summary, 5 years ago I miscarried at what we thought was 15 weeks (now accept may have been mmc prior to the actual loss at 15 weeks as all subsequent mcs have been mmc). In the last 14 months I’ve miscarried 4 times - 7 weeks, 6weeks, 5 weeks and last week at 14 weeks.
I am fortunate that I have a lovely NHS consultant who has done all the NHS tests but found nothing (no NK test). This pregnancy he prescribed me everything he could just incase so i had clexane, aspirin, cyclogest (twice a day) and pred. However, he only gave me 10mg pred (but I took 15mg because I wasn’t satisfied - bad I know) which I had weaned off by just under 13 weeks. I made it to 14 weeks and then no HB.
Anyone else had this experience?
My mind is racing for answers - was pred to low? Was it stopped too soon? Or is it completely unrelated?
Apologies for the long post - nobody close to me has ever had even 1 miscarriage so even though I know they are all always there, it feels like the loneliest place in the world.

Welcome @Jellystar23 but sorry you find yourself here at all and for the losses of your lovely babies ❤.

Sadly, a lot of the ladies on here have multiple losses and a couple of us have had second trimester losses, myself included. I found my little girl had died at my anomaly scan but she had probably passed two weeks before. I've since had two first trimester losses (both aneuploid when testsed). Mostly, the women here are being treated privately by Mr Shehata although a few are seen in his NHS clinic or by Dr Quenby in Coventry.

From your story, a lot of us are treated similarly to you in terms of medication but a few of us have complex NK cell activity, a 2nd trimester loss and/or have gone on to miscarry a chromosomally 'normal' baby on prednisolone alone. In these circumstances, we are treated with hydroxychloroquine as well as pred (and progesterone, aspirin and intralipids from BFP). Usually, the treatment dose is 25mg but during covid this is at 15mg.

I'm so sorry about your most recent loss. Getting past 12 weeks is such a mimlestone and then to lose then with all that medication and losses already is just heartbreaking.

This group of women are warriors and extremely knowledgeable and I've no doubt you are the same. I hope you get some answers from the wealth of info on this thread but don't hesitate to ask questions.

Take care, Katy xx

I need to rant!!!
Had my appt with my nhs consultant who is always amazing - he gave me his opinion about the immune treatment that Dr's like Dr S gives. He said it's no harm giving it another shot depending on what Dr S recommends - hydroxy etc and if I want to have ivf he will sort that without a wait list.
But!!! The flipping genetic testing lab in Birmingham where 'products of conception' were sent rejected the testing as both me and DH have normal chromosomes! I'm sooo pissed out it! Can they do that? Consultant just said they are complete 'arseholes and do do that'

Oh that's awful! What absolute arseholes. Do they still have your lovely babies remains (POC is a horrible word)? I'm so sorry this has happened to you @holdingon2hope. As if your loss wasn't enough.

I've just come back from my follow up appt with Dr S and they're moving me onto ovulation intralipids and off pred from next month. Not sure how I feel about it. 🙄. Xx

@HoldingOn2Hope that’s awful, I’m so sorry. Is there any way you or your consultant can appeal their decision?

@KtAgs that’s interesting, did he say why moving you off the steroids and why doing intralipids at ovulation now instead of positive pregnancy test? Are you on Hydroxy too? I’m due to start trying again from September on Hydroxy and Prednisolone but have a horrible feeling a second wave/talk of a second wave is going to mess this plan up!

@KtAgs - thank you, I’m so sorry also for your losses (and all the other ladies). Whilst it’s not good news for either of us, it’s settled my anxiety about the dose of pred being too low especially since Dr S is also reducing his dosing schedule.
I’m hoping and praying that the PM shows something, it’s the no explanation that kills me the most. Even if someone could tell me to give up as it’ll never happen, it would me 100% better than the constant hope/what if this time works!!

@HoldingOn2Hope - I’m so sorry this has happened. Surely it’s not up to them to decide whether a test can go ahead, that’s why it gets signed off by a consultant??
My first genetic test came back “could not culture” but I’ve always had a feeling that something had happened in the lab.

Hi @NICK7nick7 - It's connected to the worry about the second wave but I don't live far from epsom - about 30 mins drive. I am really struggling on the pred, the psychoactive effects are getting to me and i raised this with Mr S. So that's definitely a factor for me. Although the expense is eye watering - yikes! And yes, also on hydroxy (which I don't mind at all) X