Immune/NK cells pred thread #34

@Hopeandfaith1990 ahh fair enough my love and i too hope you can have another transfer. Try and relax for a few days and enjoy some wine and naughty food. You have such resilience remember that, no1 should have to endure what we do.

@Hopeandfaith1990 So sorry to hear this devastating news, and hope you are getting good support from the clinic and everyone else around you. Wishing you all the best with the remaining two embryos.

@Objectiontime That's great that the pred has helped so much, and I hope you can stay on it as long as you need to. I had been thinking of you...

Oh my love @Hopeandfaith1990 i am so sorry :( thinking of you.

So very sorry to hear this, just rubbish news. Sending you the biggest virtual hug xx

So sorry @Hopeandfaith1990 . It is just so painful. It’s understandable you are devastated. Hope you can give yourself care and all the time you need to process ❤️

Quick update from me (been away so will try to catch up with everything later).
just got results back from my blood assay and my immune system is still flared. I’m down to 5mg Pred today at 16 weeks but it looks like I am going to have to stay on the Pred for some time yet. Doc said it was a good job I had the test re-done. Bit worried tbh. Anyone else had to take it for longer?

Just had a call from the embryologist that another 7 have made it today at day 6. which is insane. So we have decided to pay for 10 to be biopsied as its £450 a pop. Hope i have made the right decision to not test all as it's just so much money.

@Hopeandfaith1990 they say it is about 2 weeks, so need to book back in with CRP and start on Hydroxy again before thinking about a transfer in October, providing that some come back genetically normal. Are you taking Steroids? just remember they mask most pregnancy symptoms. Also if your on progesterone too - can be confusing whats PMS and whats pregnancy.

@Holdinghope2025 where are you doing your IVF? would you go PGTA with this egg retrieval? are you also on steroids? it might make a difference with the hydroxy build up for the next FET.

Thank you @Jecca88 . I’m on the gynae waiting list on nhs just now . I need a lap I know that however I want to do another retrieval first . Hopefully by the time we get past our next retrieval I’ll be near top of list for a lap on nhs. We shall see. I just started hydroxy 400mg 2 weeks ago so 6 weeks to go until we can start prep for another fet. There’s part of me that is glad to be on a break. We have had 2 fets this year already so I feel we need it. And yes I had intralipids before my last fet. Will have them again next time .. who knows if they made any difference to me but sadly no change to outcome.

I see you’re pgta testing , really hope this route is helpful for you and that you’re doing ok in the wait to hear about them . I wish I had tested our embryos to begin with, but you never know the journey you’ll end up on.

@Hopeandfaith1990 thinking of you. It is so hard not to test as either way it totally shifts the reality you are in. Go with what you need right now and nothing else ❤️

Hey ladies,

trying to catch up.

@Hopeandfaith1990 how are you getting on not testing? Thinking of you my love. Got the day 5 update and we have 5 to send off so far for PGTA - which I am happy with and hoping we get 3 out of that. Also might have a few more tonight / tomorrow so another anxious wait. Been feeling so bloated and in quite a bit of pain post Egg retrieval - it actually feels worse than post D&C. I think I am also having the hormone crash.

welcome @Holdinghope2025 - I’m so sorry to hear about your awful journey. Have the NhS offered anything for the endo? I agree with the others that pred should be started with ovulation day. How much hydroxy are you on and how long have you been taking it? Dr s said it needs a build up for 6 weeks ahead of a pregnancy. Have you ever tried intralipids?

@Blossomvic thats so annoying about the referral for kings. Are you now outside the catchment? Have you got anyone that is family that lives in the area?

@Hopeandfaith1990 @Deerdancer34 thank you both for your kindness and thoughts. Yes we moved our embryos to a new clinic prior to the last fet . I was on dexa from a week out from fet and switched over to pred day of transfer. Dexa made me so hungry wow but I loved being on pred and didn’t want to come off tbh ! Yes I do think a lot about getting remaining embryos tested however I’m not keen to thaw and re freeze and thaw again so we are going to leave them be and if we need another cycle any embryos we get from that we will test before freezing. . . Overwhelming stuff. It’s so hard isn’t it as even if all of the immune side of things aligns there are so many other factors.

I hope you’re both having a peaceful Sunday morning wherever you are 😊

@Hopeandfaith1990 I am holding my breath! I think you're right to wait a bit and definitely a few days before going back to school! Everything is crossed tightly. Don't the days feel so long.... Keep as distracted as possible, have a focus for each day to concentrate on 💕

@Holdinghope2025 Welcome, sorry you have to be here. I'm not surprised you are tired, it's a long, emotionally and physically, all consuming journey but groups like this make it a little bit better. Have you found a clinic you are happy with now? Also I found Talking Therapy or these forums very therapeutic, helps to unload some of the weight. Sending you much love 💕

Hello everyone, I hope you don’t mind me joining you. I have spent a few weeks reading through many threads and following so many of your stories. I hope you know how much strength you all hold inside of you and how sharing your stories the way you have, have really helped me at an extremely lonely time.

a little about my story …

I am 36. Been ttc for 4 years. Have never had a positive test. Very likely I have endometriosis however on referral to fertility services I was recommended straight to ivf . Looking back I wish I had pursued a lapropscopy first but I tried to trust the professionals around me. I would say that over the last few years I have done lots of work at managing my endo symptoms and it feels a bit better pain wise however very conscious of the impact on my fertility. A recent scan could see endometriomas on my ovaries.

I have had 4 transfers of untested embryos from an ec which gave us 8 embryos. We have sadly never had implantation. We made the decision to leave our nhs clinic after multiple failings in our care some of which were really traumatic. Our last transfer we did privately following Chicago bloods and other tests which showed very high nk cells and double positive for aps. So last transfer I was on dexa then onto pred after transfer, aspirin and clexane with progesterone and estrogen. We really hoped this would make a difference but sadly it didn’t . I then re did the Chicago bloods ( at the price of a small car!!) and my cytokines are now raised so have started on hydroxy in lead up to a 5th fet.

Feels like we have such a long road still ahead. I’m very tired right now and just hope one day all of this will be worth it for all of us . Any thoughts are so welcome , thank you for having me here.

@Fletchasketch I did reply and said I thought other patients did intralipids elsewhere but they evaded the question and basically sent the same reply 🙄 Let me know if you have any questions about Superovulation. It's not time consuming (like the intralipids) and you have the appointment the same day as intralipids if that helps at all but of course it is extra cost. Oh enjoy the seaside!! 😎

@Hopeandfaith1990 glad to hear you're feeling more positive today. Blood tests are booked in for 5th September which will be 3 months since I started the hydroxy. Still feeling fine, so hopefully nothing worrying comes up.

@Deerdancer34 Thanks for the info- that is a pain that they won't let you do the intralipids elsewhere- makes no sense either as they will provide a prescription for the rest of the meds.Yes, I'm now on the second cycle, but will need to have a follow up before I move onto the third as I'll have been 3 months on the Hydroxy. I think the chances of a 42 year old conceiving in just 2 cycles is pretty low, so will be saying no to the superovulation- it's getting hard enough to fit everything in around work as it is and I'm only 20 minutes down the road from the CRP. I don't know how the rest of you manage it, but kudos!

Hope everyone has a great bank holiday weekend- we're off to the seaside, which I am very much looking forward to :).

@Fletchasketch Yes they will probably suggest Superovulation, last time I did 3 cycles of just meds and then at my review they suggested Superovulation. I had no idea there were different options and was very relieved, plus it was the first time meeting Dr Edge who is fabulous! I'll keep you updated! I just asked about a prescription for Intralipids and as I thought it was a resounding No... I don't understand how they let people do it at Cherish etc, think I'm too scared to ask... 🤔 But the at home one needs a prescription, so can't do it anyway which is really annoying. Are you on your 2nd cycle then? Glad you're GP is doing your Wellbeing bloods@

@Hopeandfaith1990 It's nice to be able to moan sometimes to people who understand! But then in a way our journies will make us far more appreciative. The amount of people who moan about their kids and I used to want to shake them, well I still do! I like the sound of all your activities! What's your next step?

@Blossomvic Welcome, sorry I can't offer much advice, it's great you've had good experience with Kings. That's the first hurdle really isn't it, finding a good facility!

Lots of love to all 💕

@Jecca88: That's wonderful news - great to hear! A well deserved treat at McDonald's!

I have asked CRP to send me a private prescription for the thyroxine, progesterone tablets, omeprazole and prednisolone, as they are not allowed to post medication over to Ireland. I will need to print out the prescription and give to my Cork GP, who will then put some Irish code on it to give to my local pharmacy! We are planning to wait at least two months before we start trying, so I guess the pred / omeprazole will only be taken from that ovulation day onwards.

Hope everyone is doing really well!

Amanda Tozer would be a good person to see if you want someone with both IVF expertise and reproductive immunology expertise! I enquired with her earlier in the Summer, only to be told that she just sees IVF patients now (she used to assist couples who were trying naturally).

@Hopeandfaith1990 thank you! Yes that's it, alongside high DNA frag, theres also morphology issues to contend with. SUCH a good point on the location, the nearest to us is surprisingly way more expensive than going to CRP Epsom which is only an hour away so not too bad and they work with Kings which is meant to be very good. Its so hard to work out what we need because I have unexplained recurrent miscarriage. And my low AMH is stressing me out that I don't have time! 😅really need to try and chill haha

Thank you for welcoming me here, congrats on being PUPO, try and plan in just one thing to look forward to each day, whether it's a walk or your favourite snack!

@Jecca88 firstly, congrats on the amazing numbers! ✨
And thanks for your reply and advice, we're thinking Kings looks really good - especially with your result today! Annoyingly I was referred to Kings last October, started the process and then our funding got pulled as we moved house while it was processing and we couldn't continue treatment. I've had another miscarrage since and now don't qualify for our local funding. 😪But we always thought it looked like an amazing facility and the docs we met were all great, so we're happy to go back!