Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

[sunnyday01]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Sasha - me too .. Worrying + Poldark! Limbo is very difficult. The as many hugs as you can get and take it easy. Have you had any night sweats at all.. Woken up that way? I'm not sure if drugs or preg struggling. Hm x

Keeping everything crossed for both Rosa & Sasha!

Sending good vibes to everyone as well :)

Q: Does anyone experience sore breasts before ovulation? Never had this before!

Drttc - only time i had sore breasts before ov was the cycle i had after my first try on pred (they were kinda lumpyish too) that was when i had a totally wacky cycle with of a tiny bit of ecwm on day 4 and af came day 13 !!! it hasn t happened again but i havent try pred again yet. Were u on pred ?

Hula, Oh dear :( Yes I just had my first cycle on pred. How come you've not been a pred again? Were you on a different treatment plan? Did you still ovulate that wacky cycle?

Really hope my cycle stays on track :-/

Any advice to avoid pred sleep deprivation or cope with it very welcome ... Seriously struggling....:(
Hope you're all ok today x

Drttc - i m not sure if i ovulated or not that cycle, if i did it would have been day 4 or 5 with a 7 day luteal phase if i did !! i laid off pred for a couple of cycles to let them get back to normal (it kinda scared me as i m 39 with low amh and i was worried it was tipping my ovaries of the edge). I hadn t taken humira as my cytokines were right on the border so i d rechecked them to see if they d changed and thed gone up very slightly 31.8 so i decided to go for humira so dr s said wait on taking more pred till that was done. Dr s wasn t convinced it was the pred however i ve never had a cycle like that before or since and my acu lady said she has seen it disrupt peoples cycles. Once humira is all done (taking 2nd dose at the weekend) i will prob give it another try. Lots of people take it every month with no probs. Hope your cycle stays on track.

Rosa - sorry you re having a hard time with the sleep. My acu recommened a book called The Sleep Book by guy meadows. It works more on not fighting being awake but just accepting the thoughts that keep your mind awake and that actually helps you go to sleep. She also said exercise in the evening can help when on the pred. I take it you re taking pred in the morning not the evening ?
Re how to manage sleep deprivation effects its tough. My ds has never been a sleep thru nighter so i can really understand how hard it is especially when working. My memory just ended up shot to bits and my thinking really foggy. I just had to keep lots of lists, and ensure i stayed well hydrated with freq snacks but avoid sugar or caffeine as that just made it worse. I still find it hard to fall asleep (and actually since humira this seems to be worse) and when i took pred if i woke in the night getting back to sleep was terrible. I just tried to think that even if i wasnt actually asleep at least if i was horizontal so my body was resting even if my mind wasn t !!

Thanks Hula. Really appreciate all the tips. Will get that book. I'm ok getting to sleep- exhausted by 1030 which is so early for me. But once I wake around 3 that's it. I am not doing any exercise really so maybe that's something to look at too. Dreading my London trip tomorrow to fri incase feel like I do today. Will just have to try keep taking every day as it comes. Just been told to up my levothyroxine and cyclogest dose too so will be 'interesting' to see effects of that. First scan now booked for next thurs when will be a day short of 7 weeks officially.
Hi to everyone x

Hula you really are a fountain of knowledge! Lucky to have you in the group :)

Wow Rosa, I had no idea the pred sleep disturbances were so random! I assumed it meant having trouble falling asleep to begin with. Hope you can find ways to get your rest! How long were you on the pres before your sleep was affected? Is your London trip for Dr S or something else?

I caved and bought a CB ovulation kit as I want to make sure my cycle is on track this month. So expensive! It's CD11 and I got a flashing smilie this morning which I guess doesn't really mean anything... The static smilie is what matters? My boobs aren't sore anymore either. Also I sent pictures of my hive outbreak to Louise and she's talking to Dr S about it. She said I might be told to up my dose of hydroxy... Which I guess means the hives are bad news!

Any updates on anyone else? :) Lurkers come out? ;)

I was pretty ok for the 10 day pred stints. Got grad worse. After 3/4 days of horrific sleep I sleep for 6/7. I think that's the pattern emerging anyway! I'm getting ulcers at the back of my throat too - lovely!
My worry of the day is constant dull aches in uterus. Feel like I'm just waiting to see blood :(
Drttc- be interesting to see what happens with your hydroxy. Hope the hives clear soon anyway, not nice for you and last thing you need!
X

I've now some spotting - pale brown. Really bad feeling
In London on my own until Friday...

If it's a miscarriage I can't stop it can I?

Oh Rosa - big hugs. I m sorry about the spotting, it s just not fair but it s brown not red so it s not over yet but i know how horrid this all is for you esp being on your own. I m sending all my sticky thoughts and so so hope this doesn t go the way you fear. Can you just rest tonight and take it really easy ?

I d think it sounds like you re on all the meds you can be but i d still call mr s office tomorrow for further advice. But usually if its going to happen then nobody can do anything to stop it....:-(
I hope you re ok, is there anyway you can go home early ?

My DH is looking at getting a sleeper so can be here for morning ... I can't go to work like this but spent all this money getting here and on hotels. What a mess. I pray I'm wrong but having had 3 miscarriages before it's impossible right now to feel positive.

Thanks Hula for your support x

That s good if he can come and be with you. What a nightmare this all is for you. Will you be 6wks tomorrow ? Could you try and get a scan somewhere in London ? I had a viability scan with the fetal medicine centre in harley street with ds and i think they do them from 6wks. Stay strong, you ll be in my thoughts.

If be 6 weeks on Fri- still so so early but my usually relatively flat tummy is anything but.. It's like I was at 11 months!
I just have to pray this is one of these cases of false bad alarm. Other people get these. I just never have. Anyway. Off to sleep as pred will wake me at 3 at the latest then my DH arrives 730. Thanks for writing tonight. Means a lot x

Meant 11weeks of course. DH arrives soon. Worried about all this happening in my long train journey tonight.

Rosa sorry you have this anxiety at the moment :( it's awful (as you know I got that t-shirt twice on the plan). you know it's not over till it's over, miracles happen and the symptoms are all normal for pregnancy! I know there isn't much I can say or do right now to help (such a waiting game) but you are in my thoughts and prayers and really sending all the positivity in the world xxx

So sorry you're going through this Rosa :( As Determined said this can be completely normal! Even people in this group have gone on to have healthy babies post bleeding scares. Try to make yourself as comfortable as possible. Get the robe and slippers on! Relaxing a bit can only help. Hope your DH has given you a comforting cuddle during this tough wait xxx

Thanks so much everyone. It feels like all my other miscarriages though. I'm so glad my DH made it here.. We are just psyching up to travel to Kings X and get the long train back to Edinburgh .. Praying it doesn't all happen on the journey. Have a scan in Edinburgh at 11 tomorrow but don't expect will need it. What next? Not sure I can believe it's worth continuing right now.. Feeling numb as well as sad and scared. I'm so glad there are people that can relate to this.. Though so sorry at the same time as means you've all suffered too x

Don't be sorry we are all in this situation together! It's so unfair! I would have that scan just so I know...good or bad as I feel it's better to know. I'm pleased your dh is with you and sorry you have a long train journey when you just want to be home.

I know that numb feeling but I can tell you it gets better/easier. Sending you lots of hugs xxx

Determined, I know you know. Did you find out it was genetic? Think I'd need to know something could be different if could bring myself to try again....