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

You can go to either @chickjen. Can you get to your local EPU? Given history they should see you same day.

Thanks @Sunshineblonde1 😀 They are only open in the morning, plus I'm at work which is 40mins away so can't just sneak out. I might try the GP though in case they have something out of hours, but then she's not always very helpful 😕

Oh good luck ☘️ @chickjen. Hopefully you can get to EPU tomorrow morn, they should be able to scan you too.

Be aware my EPU won’t let you self-refer but I think this is unusual. They require you to get referred for GP first, even when you have ectopic symptoms and the GP sends you directly to A&E. Ridiculous, I know.
Good luck to you xx

Hello! I'm new to the thread. About me: I'm 41 and Mum to DS who was a Clomid baby, now 5. Since then I've had unexplained infertility. I'm now at BMI Chelsfield. Had first round of IVF in Feb, all stages went well and then no period but a BFN. I've been referred for an NK CD69 cell assay test. Looking for advice on what to expect and any sources of information you've found useful or questions I should be asking.

Wow thank you for the welcome, I feel like I have found a whole new group of friends.

@Chickjen (I hope all is ok?) and @DaniMERL I was also at the clinic at 10am on Monday! We were probably all in the waiting room at the same time!

I have been told to take pred from ovulation for 10 days along with Cyclogest and Omeprazole and I'm really worried about the side effects particularly as no one at work knows about this treatment.

@fnej01 Dr Shehata thinks I have Hughes but testing me again in May. My Abs came back at 95.

x

@AcornHill, yes, these ladies are special alright and you certainly have found a new group of friends.

I am on the same protocol as you. The only side effects I've had are when I come off the prednisolone when not pregnant but fingers crossed you won't really have to do that. The cyclogest can get messy, my advice is to try the back door...!

I also found it annoying that I had to eat breakfast every day to take the drugs; does that count as a side effect?!

@Chickjen, thinking of you. Good luck tomorrow hon xx

@Acornhill I was probably there after you - 11.45 and he was running well over 30 mins late so 3 other people had to go in before me while I waited

@Acornhill completely understand your worries I fretted and fretted before I began taking them but for me personally the only side effect I had was incessant hunger, and to be honest that could have actually been because I fell pregnant at the same time. I know others on the thread have had withdrawal side effects. My advice would be that everyone is different and you just need to try and see how you feel on them. There are alternatives to Pred if you really don’t get on with them. Good luck Hunni and try not to worry to much. Move forward to take each day as it comes 💐

Welcome @Maranello4! The test is just a blood test, but it may be expensive and they may need quite a few vials, unless that was just me as I had a few other tests at the same time. If the level is found to be high you will likely be prescribed a low dose of steroids to calm the immune system. We are all mainly being treated for recurrent miscarriage but presumably the theory is the same.

@AcornHill I wish I had paid more attention now! I was sitting under the window with my eyes shut as I had the most awful headache. It did cross my mind the headache could be a pred symptom as I was a few days in to taking it for the first time, but really I think it was a combination of stress, worry and not eating dinner on Sunday! I was really worried about lack of sleep as I do sleep a lot, but thankfully I didn't notice any side effects at all, and none since I stopped either. If you have already survived miscarriage and work I'm sure you will be fine with the pred 🍀

@Chickjen hope that you are doing ok lovely x

@Maranello4 good luck with the bloods

@AcornHill My sticky blood was diagnosed through two lots of blood too. I think you have to test positive twice for the antibodies for it to be a conclusive diagnosis.

As for me, went back for second biopsy today at Coventry with Professor Brosens, he has prescribed 20mg pred daily from bfp and cyclogest from day 21. This is in addition to heparin and aspirin due to sticky blood. This was pretty much what I expected. Plan to start trying to conceive again in June, so for now going to focus on me for a couple of months, before rejoining the merry go round again.

Hope you are all ok. X

Ladies! I'm missing you all.

Went to Zita West yesterday where my lovely doctor rejected Mr S's cruel conclusion about the blame sitting with me. He said there was no way we could possibly know. He just wrote me a new plan and didn't even mention the fact that I'd be using donor sperm for this round of IVF instead of 'using' my partner

I hope you're all doing ok. I think about you all lots. Have a lovely Easter x

@KittyKatSmile great to hear from you lovely 😀 I'm glad your appointment went well and you have a plan. Can you start straight away and will you still be using the pred etc from Mr S or can they do all that for you too? I have been thinking of you and hope the 'home' situation is alright ❤️

@DaniMERL thinking of you too and hope you are ready to try again 🍀

My miscarriage finished yesterday so this weekend I'm going straight to the pharmacy to order the humira and presuming it works should be able to try again properly in June 😀

Aww best of luck ladies it’s so lovely to see the fresh wave of optimism 🐣💐🌞🌱🌞💐😀 🤞x

Hi all,
Really struggling to follow everyone’s stories! @chickjen so sorry to hear your latest news.

Bit of a surprising update from me. After the CP I had a bleed just a few days later than my period would have been due. Then figured I’d stick to the plan and give it another go on the pred/Hydroxy whilst waiting for my follow up with Mr S.
Thought I was was about 9dpo on Tues and tested and got a really strong positive! Even stronger line this morning.
So... here we go again. The earliest I can do intralipids is next Weds as we are away.
All a bit surprising.

Ooooo great news @DaniMERL!! Best of luck 😄🤞 I’m in Epsom next Wed for my last lot of intras might see you there!

Oh @DaniMERL that is such great news and even better the decision making is out of your hands. Now you can just enjoy this moment of fresh hope and deal with the worry of appts next week 😀🍀🍀🍀

@Sunshineblonde1 lovely to hear from you, how is the bump? ❤️ I did wonder if you and @NixWix had migrated to the next level 😀

@sunshineblonde1 just realised it’s thurs I’m there, not weds. A day later... I hope it’s not too late x

Awww thanks @chickjen 💓 The bump is in bloom. I’m finding 2nd trimester so much easier than the first! Though the 4 week gaps now between scans do feel like forever ⏳ can’t believe in 3 weeks time i’ll be half way!!
How are you doing my lovely? And @nixwix?

@DaniMERL I had intras on day 17, I think you’ll be fine 😘 I truly believe if they are meant to stick they will one way or another. I know the nurses are keen to get us in ASAP and I do understand that but it’s not end of the world if it’s not immediate is all I’m saying. Everything crossed for you. X

@daniMERL I just realised my appointment is Thurs too, a 9! x

@DaniMERL congrats have everything crossed for you.

@Chickjen hope that you are doing ok. Sounds like you are positive going into the next cycle.

Hope that everyone else is doing well. I am fully stocked up from pharmacy but waiting for a month to start trying when we are on honeymoon. Think finally starting to get my head around diagnosis's x

@DaniMERL, this is amazing news, so happy for you.

@Chickjen, I'm sorry to hear your news. You sound very upbeat and positive. We'll get there x

@Sunshineblonde1 I had also wondered if you'd left us for sunnier climes. It's great to hear your news and still have you with us

Love to you all x

Hi All hope you have had a beautiful long weekend and enjoyed the lovely sunshine 🌞 and for those ladies waiting to start the protocol I’m sure the Vit D has supported all those great feel good hormones so you’ll be in a great place when you begin your next baby dance journey 💓 being in a good place mentally and physically really helps so I hope your all giving yourself lots of TLC 😍 I’m about to start a pregnancy yoga course which I hope will help get my muscles working for eventual labour.

@HappyApple05 how are you getting on lovely?

@sunshineblonde1, @DaniMERL, good luck tomorrow lovelies. Hope you have a romantic meeting in the waiting room...

I am currently sitting in a waiting room of my own waiting for more blood to be taken from me for goodness knows what tests now...

Have received my protocol from Zita West so will be starting sometime next month. It will really wreak havoc with the long weekends!

Sending you all love and strength ladies x

Yes good luck tomorrow @Sunshineblonde1 and @DaniMERL! 🍀 Let us know how it goes!
Great news @KittyKatSmile and @fnej01 not long to wait now 😄
I am having a crisis trying to get the humira, I knew it wasn't going to be in stock but I haven't found anywhere yet that can even order it in 🤔