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 that is both exciting and terrifying in equal measure 😱 But I'm glad you get to keep your holiday, you will certainly be able to make the most of it if you are awake 24/7 😂
I am forever tired so I am hoping the pred will just make me a normal amount of tired! But if not, crosswords at 4am it is 😀xx

@Chickjen it's funny (no it isn't) that I was completely wide awake at 4am and am now utterly exhausted on my way to work!!

Very good point about maximising my holiday. Always got to look on the bright side (of watching the sun rise. Every. Single. Day.)

@chickjen nice to hear from you and I’m sorry to hear you have been down. I have certainly been there on many occasion and even over the last 10 weeks or so. It’s so incredibly stressful.
We told out 5 year old daughter last night so it just had to work out now!
Glad you have had more success with Mr s and good luck with the next stage xx

I have to say I’m permanently tired, regardless of the pred. I always wake at about 4 and struggle to get back to sleep for about an hour though.

@KittyKatSmile I was about to say at least it is only temporary, only it isn't is it, pred,pregnancy, then a baby, they all take a toll on your sleep, that is a lot of sunrises 😱

@DaniMERL how sweet ❤️ I bet that was emotional, is she excited?
Want to join a 4am crossword club? 😂

@KittyKatSmile Good luck with the embryo transfer! I find them a bit uncomfortable (mostly because you have to have a full bladder) but not painful.

Thanks to all who've clarified my thyroid results. I've called up my IVF clinic and made an appointment for the beginning of July, with a view to having a transfer at the end of July. Hopefully the rest of my results will be in by then, and I'm giving my body plenty of time to get back to normal after the last miscarriage. Now it's just a case of waiting - I hate the waiting game!

@ginandtonicformeplease I know, the waiting is horrible isn't it?? Do you have embryos in the freezer or are you doing the whole shebang? If it's the latter then you could use the time to start on random nutrition things (eat a spoonful of tomato purée every day?! WTF? But all of my embryos have been graded 'good' so let's say it's the tomato purée!) and supplements? Good luck to you x

@KittyKatSmile I've got embryos in the freezer. Yes, some of those suggestions are pretty disgusting, but DH has developed a love of beetroot juice I'm actually getting him to continue with the tomato purée as well on the off-chance it'll make just one of his sperm healthy enough to do its job!

@ginandtonicformeplease that's great that you've got some in the freezer. I had thought I might end up with some of those (after fervently praying earlier this week that I'd just get one to be put back!) but I've just found out that only 30% of them make it to day 5. Terrible odds! I feel like my poor embryos are in the hunger games!!

@KittyKatSmile I remember it got more and more nerve wracking as the week went on and the number of embryos decreased - out of the eggs fertilised, over 50% made it to blast.

Oh @ginandtonicformeplease, thank you. That is such a good thing to hear. It seems to be good news every day but I can't help hearing all of the doomsday angles...

Sorry ladies for reintroducing myself then disappearing, work and life was a bit hectic! Danimerl so glad your results were all good and well done on telling your dd bet she was excited (can’t wait to get to a safe point so we can tell our dd5☺️), kittykatsmile good luck with the transfer, fingers crossed and enjoy the holiday, ginandtonicforme glad you got good results on humira and it’s looking good for July, chickjen sorry you’ve felt low, it’s a bloody rollercoaster isn’t it when it’s a hard road and things never seem to go right.
As for me I’ve finally booked in for a scan at rmc next week when I should be 7 weeks, if it looks good I might start to think it may happen finally for us, if not I guess we will keep trying, but age is against us now- I’m turning 42 next month. My appetite is enormous which is very bad and I’m another one awake every night between 4 and 5 am and reading until I drop off again before dd shouts at 6.15. Last time I guess I didn’t take the pred for long enough to get these symptoms, please tell me they go off after we wean off! Good luck to everyonex

Hello ladies just popping in - I hope you don't mind me sharing my story. I was on this thread many moons ago. I just wanted to give a little bit of hope to anyone who is struggling with the pred and/or has had to quit. I had horrid side effects, (took it for about 4 cycles, including one pregnancy which ended at 8 weeks). I was so ill, I had the shakes and even my face was shaking. Palpitations etc. The worst I've ever felt. I decided after the loss to just give up on the programme and let nature take its course. Some months later I conceived and went on to have my DD a month after my 40th birthday. No pred, no aspirin, nothing apart from folic acid and vitamin d. So it's not necessarily the end of the journey if you can't continue with it ❤️ for those that are on it and doing okay, I wish you all the best and lots of baby dust ✨

Hi All

Unfortunately we had bad news at our 7 week scan on Friday. Baby was on track size wise but no heartbeat so likely very recent (like within a day or less) that things stopped. This is my first try with mr S but 7th miscarriage in 3.5 years. Same time frame as all the others.

Was hopeful that some different treatment my be the thing. So even though super early days post news questioning next steps...

Oh @Lau2019 so very sorry to hear.
Are you just on the pred at the moment?
I had a similar thing with my first try with Mr S although at our 6 week scan there was really nothing to see at all so it mustn’t have really developed at all.
This is why he added the Hydroxy to the mix and so far so good. I also know a number of women who this has worked for either on its own or alongside the pred. I did question why he doesn’t use this to start with but I guess the stats must show enough people have success on the pred alone.
Don’t give up hope, please. I very nearly did and started to wonder if there was another problem that no one had found.
On the plus side at least you saved yourself an expensive 6 week and 8 week scan with Mr S but I know that doesn’t really help right now.
Try to get your appointment booked with him ASAP because you need to take the Hydroxy for 6-8 weeks before trying again. I realise you need to have this loss resolved but the wait can be agonising when you are ready again and taking the meds can do no harm in the meantime.
Lots of love to you and keep us posted x

@DaniMERL- It was a 7 week scan at mr s’ clinic so was very expensive but you are right didn’t have to have 2!

I was Just on pred from ovulation and intralipids at 12days post ovulation.

I am going to call the clinic Monday to ask about a follow up and whether I have to wait for cytogenetics to come back or not. Given I am a lot of miscarriages along I don’t think I just want to do same again regardless.

I am booked to do medical management on Friday - am doing it in hospital as had to have the paramedics out because of the unmanageable pain and sickness last time and so we can increase chances of getting cytogenetics (again had a weird thing happen last time)

Thanks for the messages of hope it’s really hard and this is the first time I have had the thought IF we choose to try again.

Will keep you posted

@Cream123 - i m day 4 on oestrogen today. had my down regulation scan last friday, all looked ok so started on oestrogen. Will have another scan on monday 24th and then ll know the transfer date. Probably ll start taking my first G-CSF injection coming tue/wed. Bit later than your protocol..Hav u been told to take every 3 days as well?
and have you started taking g-csf? Glad to find someone wtih a similar protocol.
@KittyKatSmile - How much dose r u on? I took 20 mg last time and like u was wide awake from 4 am. Taking it bit early helped me but still had disturbed sleep. soon ll be starting to take it again now!!
@Chickjen - good luck on your journey.hope this s the month for u.Take Care xx

@Hopeful07 same dose, yes. It's usually 4am for me too but last night I couldn't get to sleep and then was only asleep for 40mns before waking up again. I ended up taking a melatonin which tided me over to 6:30am but I've just had my embryo transfer today so don't know if it's still safe to take. I never had this before and I was on 25mg then!

@Lau2019 so sorry to hear about ur loss. I know exactly how heartbreaking this would be. I also had my 7th miscarriage after being in Mr.S protocol, was very hopeful that it would work for me. Unfortunately we seem to fall in the very less category where pred dont work. Please dont lose hope and as DaniMERL said book for a review and if u re ready try the hCQ protocol. I got to know from other forums as well that people have got success with hcq after failing on pred. After losing hope, I have now gained some strength to try with hCQ and gcsf and hoping for some success.
Please dont lose hope. take carexxx

@KittyKatSmile - great ur embryo transfer went well..not sure whether u can take melatonin now, its better to check with ur consultant. I have to take 25mg this time, its weird the body reacts to it each time differently. Hope ur sleep pattern gets better and u can relax a bit in ur 2ww. Good luck

Hi everyone. I used to post quite regularly but haven't had the time lately. Somehow pregnancy, family visits and house hunting got me very busy.

Just want to say hi to all the new ladies here and anyone under Dr S' protocol. Good luck!! So happy to see that some of you got your BFP. Please keep posting, always reading even if I am not posting.

Just want to wish you @DaniMERL congratulations! I hope you 12 week scan went well. And your harmony test results are all clear - so amazing! @KittyKatSmile how did your embryo transfer go? I rmb mine, two men and two nurses looking at my down- had me laughing inside. How are you @Chickjen !! And @Sunshineblonde1 would be great to hear from you and how you are getting on. Hope all's well with you and little one!

As for me, I am 24 weeks and still don't know the gender! So far so good, baby moves quite a bit. Had my whooping cough vaccination recently. And booked antenatal classes although I am keen to book NCT ones so my husband can join! Anyone else starting antenatal classes? The odd moments of anxiety are still there but trying to stay positive! :)

This sounds crazy but I am thinking of next pregnancy already as I'd like to conceive naturally! So anyone out here who tried ivf and then got naturally pregnant? (With immune issues)

Xxxx

@nixwix thank you so much and lovely to hear from you. Amazing progress!

I have my scan with Mr A at the clinic this morning, looking forward to that.

xx

Hey @nixwix lovely to hear from you my dear, so pleased all is going swimmingly, I think we are Due Date Twinnies arent we and we are house hunting too :) I am 25 weeks this week and really enjoying the second trimi. The 1st wasnt so great but I havent looked back since 12 weeks - time has just flown and we are babymooning next week - last 'adults only' hol until my hen next year wahoo! Baby is kicking lots every day but bump hasn't quite popped yet which is good as I can still get in the gym every day. @Nixwix like you I am already thinking of potentially having a second, it would be so nice to have a sibling for this little bubbin if I can squeeze another in!! P.S. All my friends who have gone through IVF fell pregnant naturally after!! I don't know what it is, it's like it resets something internally!?! I'm starting the antenatal classes in August and really must ring NCT to start that too - ive heard nothing but good things. Pregnancy Yoga has been so helpful and informative and has helped me to bond with little lady.

All in all I personally cannot thank Mr S enough for bringing his theory, tests and the protocol to the UK and I am positive all ladies here will have their rainbow babies soon - you are all on the right path whether its through Mr S, IVF clinics or other care. Sending all so much love and positive thoughts - you are all amazing for tackling this conception journey - don't forget to be kind to yourselves for achieving what you have already achieved in your individual journeys. The tests and research and the uphill struggle will all pay off. And make sure you treat yourselves regularly!!! You all deserve it! Big hugs!!

I am so pleased to see so many new BFP's since I last checked in. Amazing progress @DaniMERL - you made it!! Hope you found Prof A as AMAZING as we do :) and @Chickjen how how you my lovely??Don't worry too much about your cycle changing. After my last D&C my cycle went from 25 days to 31days to 27days - I actually preferred the shorter periods. Accupuncture helped to regulate my cycles. Oh and yoga and breathing - I adopted the 'think less, breathe more' approach to get me through the anxiety of the protocol and first trimi. It was my salvation!

@KittyKatSmile best of luck with your run of IVF lovely and to all those who are currently pregnant - HURRAH THIS IS IT!!!!!

@HappyApple05 not sure if you still check in from time to time but I have been thinking of you and hope all is well. You must be past 12 weeks now. Hope all is well

Keep the positivity going ladies this thread is an amazing resource.

x

@Nixwix @Sunshineblonde1 so so good to hear from you both and to hear your updates. All of you ladies were the only thing that got me through those very dark early days post mc 4. I am feeling so zen and at peace these days, I hardly recognise myself. Lots of love to all of you x

Aww that is so lovely to hear @KittyKatSmile, I feel the exact same!! X