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

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 😘

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

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

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?

@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

@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

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

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

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

@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 😀

@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 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?

@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. 🍀

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 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 💗

@KittyKatSmile hahaha! I honestly don't know how he is keeping it from me. But I can tell he is finding it difficult, I am giving it a week before he slips up 😂

You are so right, we are just a bunch of strangers who stumbled upon this thread, providing the much needed support cause we have all been through similar; so lucky and happy I did! I hope we can all meet one day and grab coffee. It would be so lovely. 💕

Thank you darling ladies. You are seriously keeping me going through this. How strange is this, a bunch of strangers who don't even know each other's names being the best ever support network?!

@chickjen, have you told your partner yet??!

@Nixwix are you going to tell us?? I can't believe he knows and hasn't told you! Is he not terrified he'll slip up?

I've just made an appointment at the Zita West clinic. They are a little happy clappy but the doctor I've seen there before is lovely so I'm pretty pleased. So now worrying about which month I start is pretty much out of my hands. For now I'll just eat a lot of chicken and stop the wine which is definitely a good idea as it hasn't much helped my mood. The only thing that really helps is exercise so I'll probably be fine to climb Kilimanjaro soon :-)

Have a lovely weekend all. @chickjen good luck for Monday, keep us posted lady x

Woah @KittyKatSmile that is tremendous pressure he has put you under 😡 as if this isn't hard enough already you have all that to contend with too 😲 You are incredibly brave and strong to get this far, and very resourceful, you can totally do this on your own if that's what it takes. That's a great idea from @Sunshineblonde1 to take some time out for yourself, your mind needs TLC just the same as your body. Climbing mountains does sound a little drastic perhaps(!) but do something that suits you, buy a cat, plant some flowers, take up yoga.. I hope he sees the error of his ways and comes back, if you still want him of course

@KittyKatSmile so sorry that you are going to have to go through a break up, as if you didn't have enough on your plate. I strongly believe everything happens for a reason and something or the other leads you to your desired destination. I didn't see it as anything positive at the time when I had my mmc or the ectopic but today i feel everything lead me to this. I feel stronger, less naive, more informed and ready to take on anything - quite a difference from how I felt when I first got pg. So who knows where this journey is going to take you... My best friend in the states is also considering ivf with donor sperm and is determined like you. Please stay strong you are doing great, stay positive, look after yourself and take time to heal. Also try to surround yourself with positive and supportive people, your surroundings make a difference to how you perceive everything. It'll work out, one way or another. If anything, you have this group of women who are here to listen and support. Love and hugs. 😊

@Chickjen I don't know how he has kept it from me either.. good luck for intras!! 😊

Oh flipping eck @kittykatsmile I’m so very sorry to read that your going through a break up on top of everything else!!! Your doing a tremendous job of riding through this current shit storm darling. How are you feeling about the break up? If there’s anything I’ve learnt through this TTC journey is there really is not one set path to conception. There are so many routes to the final destination and I think it’s great your focusing on your next steps towards reaching your goal. I would totally have done the same and I already knew I would have considered donor, surrogacy or adoption if things hadn’t worked out, You’ll probably find this will make you all the more determined. Your obviously a very strong and independent woman who knows what she wants, hurrah! Believe it or not some of the best things in life often rise from the most challenging of life events as shitty as they seem at the time. We are either winning or learning! Do you have supportive friends and family around you? Can you take some time out just for yourself? After the D+C last year I took myself off on a well being retreat and my DP went and climbed Mount Kilimanjaro. A bit extreme I know! But it helped to deal with the grief individually in our own different ways. Sending love and hugs. There will be light at the end of this poxy tunnel xx

Well my OH doesn't want to try anymore so we're going to break up. The last time I got pregnant was our last month trying anyway and I'm sure he probably didn't expect it to work. I'm going to do IVF on my own. (I was doing IUI on my own when I met him.) My heart is breaking all over again and I don't know how much more I can take.

I've contacted the IVF clinic to see when I can start. I imagine they'll say a little while as some of the drugs I'll need to take before my period and I don't really know when that's going to be. I just want to get started and move on but I suppose I also shouldn't spend loads of money without giving it the best shot. On the plus side, they'll do everything (hopefully): get me pregnant and keep me pregnant so I can avoid the Wolf of Harley Street

Sorry for the shitty story. I'm so happy for all you bump ladies. And @Chickjen, I'm so tentatively excited for you my lovely xx

@KittyKatSmile anything in particular getting you down? I know we can't fix it 😥 but we can listen and understand better than others who haven't lived through this !&@!

@Sunshineblonde1 I don't know how you got pregnant (whether through IVF or not) but I can't stop smiling at the thought of you being ill (sorry!) but still insisting to your OH that you should DTD. I needed that. Haven't been smiling much lately x

Me too @chickjen! I didn’t get sore boobs until much later this time and I don’t even know that they are even really that sore now! Every single pregnancy is different. There is no normal or abnormal 😀

@Sunshineblonde1 I have always had sore boobs in the past, even before I test. This time..nothing.. But maybe different is a good sign! 😊
The pred will be delivered tomorrow I think, so most probably starting Saturday 😵