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

@kittykatsmile your positive energy is contagious! I love that your getting all your ducks in a line for the IVF. I’ve heard very good things about Zita West! I think a bit of happy clappy is what is needed to do away with the recent crappy 😃And exercise is a saviour. I don’t think I would have got through this journey without it either. Your climbing your very own metaphorical Mount Kili, keep doing what your doing hun, it’s so inspiring 🤩 and like @nixwix said mental attitude is so important in all this.

Let us ‘know’ if you end up ‘knowing’ @nixwix 😛

And continued luck @chickjen and @happyapple05.

Thinking of all other ladies on the thread too 💗

Hi Ladies,

Please may I join - I have been on various TTC threads since mid last year. In 2018 I had 3 miscarriages, this week I have had various RMC results back which have diagnosed APS and a high uterine NK (16.5%). My NK were tested by biopsy at the coventry clinic where I am due back for second biopsy and a meeting with Professor Brosens. Based on previous conversations am expecting a treatment plan of Pred + Heparin + aspirin + cyclogest. Mind is a bit blown with all results back in one week, as was fully expecting them to find nothing wrong. Just looking for a bit of moral support, any tips what to expect. Lovely that so many of you are pregnant - gives me hope - fx for you all x

@KittyKatSmile if we can help even a tiny bit to get you through both your challenges then I'm so glad. We are here for you whenever you want to talk. Put yourself in the hands of the clinic and let them do the thinking for now. ❤️
My OH does know now, or I think he does! We were in the car together when the clinic rung. He asked 'what's happening?' I said 'we are moving to phase 2 and skipping phase 1' he said 'does that mean you are definitely ...' I gave him my best there is nothing definite in all of this stare and he said 'OK, let's not talk about it'. And we haven't, not one word 😂 It helps actually, makes it easier to not get too attached.

Welcome @fnej01 you have come to the right place for all things NK/pred related. Most of us are under Mr Shehata in London who looks at NK cells in the blood rather than the uterus but I believe all the treatment is basically the same just the method of diagnosis differs. There's a variety of stages we are at too so somebody is bound to have answers to any concerns you have. It is overwhelming at first but at least you have something now to focus on fixing. 🍀

@fnej01 as @chickjen says, you are in the right place. I have no experience of heparin, but have taken all the rest. I too had 3 m/c in 2018 and was relieved to have a diagnosis; far better than them saying there's nothing wrong with you, in my humble opinion. It's overwhelming at first but you'll get used to it very quickly. And you've got us now!

@chickjen that sounds very sensible. We tried to do that last time, failed and I wish we'd tried harder! It will definitely be easier for me next time! And this is going to be great for you! Let us know how you get on tomorrow.

@DaniMERL, how are you doing lovely?

@Chickjen @KittyKatSmile thank you both for the warm welcome. As you say I am glad they found something to treat, but had totally prepared myself for nothing wrong, so have been shocked by diagnosis. Don't plan to start trying again until late May (plenty of time to get my head around it) as we are going on belated honeymoon, and I want to enjoy the mojitos before next pregnancy, and in honesty for my mental health. I really struggled with the cycle of pregnancy/mc last year and feeling I couldn't look forward.
Need to orientate myself with the thread a little and everyone's story but it is always so humbling the journeys that people have been on. Nice to see some successes x

@fnej01 I was exactly the same. I went for the results hoping for something borderline and easy to fix, but fully expecting another "all the results are clear". So I too was shocked how I felt when they did find something.
A great idea to delay so you can enjoy your honeymoon to the full, and come back with a clear mind and fresh outlook. The mental part I find the hardest but this thread has helped more than I can say 😀

Hi everyone,

I have only recently joined and someone mentioned this thread in another group. Its so reassuring to hear of so many stories.

I have had 5 miscarriages and 1 ectopic over the last 3 years and now I am starting my first round of pred with Dr Shehata. I have been told I have complex natural killer cells and possibly Hughes Syndrome which is the coagulation of my blood. Also took the Humira drug initially but had a reaction to the first injection but it did work which is great news.

Would be great to hear about everyone's journeys, its so interesting reading your messages. Trying to carry on with work and general life can sometimes feel a little overwhelming.

Lots of love to everyone.
x

Hi all,
Sorry I have struggled to keep up and respond back to people, I lose track of where everyone is up to.
So I saw Mr S today. Kind of as expected and as feared, he didn’t have a huge amount to say - we can’t prove why the last pregnancy failed so can’t put it down to failed immune therapy treatment. However there is another drug he could replace the pred with and also remain on the Hydroxy. It is called G-CSF. Has anyone had this?
It is an injection - once a month on 6dpo. £80 a pop. If you get pregnant you then have to have it every 3 days until week 10, which equals £25 or day.
But he left the decision entirely up to me - stick with the Hydroxy and Pred of switch to Hydroxy and the new one. He gave no indication of what he thought was best and I just felt overwhelmed by it all.
I’d love to hear from anyone else who has been faced with this decision or been on this drug.
Thank you xx

It would have been really far more useful to use been sent some info about this drug in advance so I could feel informed and discuss it. I couldn’t work out the financial implications there and then so of course I will need to go back again if I now change my mind (at the moment I have decided to stay on current programme of pred and Hydroxy).
I dread the thought of getting pregnant again and waiting each day to lose the baby, knowing that we are not trying anything different

@DaniMERL, you poor darling girl. I agree that it's completely overwhelming and his approach/bedside manner really doesn't help things. I haven't heard of that other drug but I really despise the pred so I'd probably be trying that if the financial side works out ok for you. I would certainly pay £80 to not get the withdrawal headaches and I can't help thinking that pred has stopped me conceiving in the past (which is huge for me as I'm pretty ancient.) so I'd be really happy to try something new. But this is all just my stream of consciousness; this is such a personal journey for all of us and of course people have had wonderful beautiful success with pred (and I don't want to scare off any of the new ladies who have just joined us).

Let us know how you get on. Thinking of you x

@DaniMERL I was at the clinic too yesterday! I was there around 10am.
Would you still have intras with the new med? And do you inject yourself? The thought of one shot on day 6 rather than daily pills does sound attractive, but travelling to the clinic every 3 days sounds pretty horrid. Can you compile a list of questions and email the nurses?
Are there any other options outside of NK cells you can try in conjunction with the pred? Do you already take ubiquinol, does your OH take fertility supplements, have you tried acupuncture, do you track your temperature? I don't have any evidence it helps but have a look at N-Acetylcysteine, I really think it did something for me, I don't really know what, but like it regulated my cycles a bit.
Personally I think I would give the pred another shot if there is no evidence it hasn't worked and the alternative option is way more expensive. (Sorry if that confuses things more ❤️)

Welcome @AcornHill sorry you find yourself here, but you have come to the right place, plenty of support here as we are all going through the same

Hmmm @DaniMERL that is rather confusing I must admit and sorry your having to face more decisions and more costs. Sometimes I feel like the specialists themselves are not even actually sure how and why things work and are just throwing stuff at it in the hope something might make it stick??? I’m trying to figure out the rationale behind Dr S suggesting another drug at this stage? If chemical pregnancies are not connected to immune malfunction then I’m wondering why the need to change. I thought chemicals were down to egg/sperm combo/DNA but I’m not an expert and perhaps wrong? I’d be inclined to have another go on the current protocol if you feel you have it in you? I can totally understand the fear you have, but you must keep trying and believing that it’s possible, which it is. It can be a numbers game. There’s a lot hysteria that can build with this journey and a feeling of not being in control of something that is wanted so badly. Take some time to process the info. Is there much on Dr Google about this other drug he’s suggesting?

Welcome @AcornHill and best of luck on Dr S’s protocol!!!!! So sorry to read of your last 3 years of loss 😥 you’ve done so well to come this far and I wish you all the luck in the world for your next baby dance on Dr S’s treatment. Do fire any questions out as and when you have them and in the mean time hope the Pred is kind to you xx

@chickjen wahoo you’ve had the intras!! Another milestone down 😀🌱😀

And welcome @fnej01 so sorry for your loses but glad you have found the thread. I hope we can be of great support to you! It sounds like your making progress on finding out what protocol is best for you! Keep us posted! And take your time getting your head around all these tests results. It’s is overwhelming at first and a lot to juggle mentally and physically. For me it took a few months to get my noodle round it. Your in safe hands though and my advice is to trust the experts and go with it. We are all on similar protocols as you 😘

@fnej01 and just tea about your honeymoon wahoo! Congrats! That’s perfect timing you can go away and leave these troubles behind. Drinks cocktails, get some sun and pamper yourself. You’ll come back in a much better place. Where are you honeymooning? X

Tea = read, bloody autocorrect.

Thanks for the messages @Sunshineblonde1 @Chickjen - I am trying to chill about it this week at least until my appointment Friday which I am sure will increase anxiety levels again. DH is worried I was shortly be able to write PhD in this stuff 😂
That sounds like a tough decision to make @DaniMERL

Ladies have any of you got a sticky blood/Hughes/aps diagnosis also?

Thanks for the messages @Sunshineblonde1 @Chickjen - I am trying to chill about it this week at least until my appointment Friday which I am sure will increase anxiety levels again. DH is worried I was shortly be able to write PhD in this stuff 😂
That sounds like a tough decision to make @DaniMERL thinking of you x

Ladies have any of you got a sticky blood/Hughes/aps diagnosis also?

Looks like another mc for me. I woke up in the night with that feeling in the pit of your stomach when you just KNOW, so I tested this morning and the FRER is no darker than last week. I think the meds are just prolonging something that was never going to be so I have stopped them all. I guess it was too much to hope this one would be any different when I haven't followed the protocol fully 💔

Oh no @chickjen are you sure? I know what you mean by that feeling 😢 I hope it isn’t true and is just fear 😟 x

@Chickjen I'm so sorry. Are you sure though? Don't rely just on those tests. See if you can get your hcg tested? Thinking of you darling girl and praying your stomach is wrong x

Praying you are wrong @Chickjen please get your hcg tested and are you bleeding or in pain? I hope it's not true. 💔

@Chickjen really hoping you are wrong. Many a doctor and midwife have told me that line colour isn't a good way to monitor things. So thing the previous advice to get some bloods is sensible. But I am the same as you with wanting to see line progression and know exactly what you mean re pit of stomach feeling. Sending hugs xxx

Thanks everyone 💝 I've never had HCG tested before, is it by the GP or EPU?