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

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
Rosa27 · 22/04/2015 21:18

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.

Hula2 · 22/04/2015 20:34

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 ?

Hula2 · 22/04/2015 20:14

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 ?

Rosa27 · 22/04/2015 20:10

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

Rosa27 · 22/04/2015 20:01

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

Rosa27 · 22/04/2015 19:30

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

Drttc · 22/04/2015 16:31

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? ;)

Rosa27 · 21/04/2015 17:28

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

Hula2 · 21/04/2015 10:29

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 !!

Hula2 · 21/04/2015 10:16

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.

Rosa27 · 21/04/2015 09:54

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

Drttc · 20/04/2015 22:14

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 :-/

Hula2 · 20/04/2015 19:55

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 ?

Drttc · 20/04/2015 09:31

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!

Rosa27 · 19/04/2015 21:46

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

SashaKerr · 19/04/2015 21:40

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 19/04/2015 21:19

Thanks guys.. It's just so hard as you all know.. Really scared of going to London Wed-Fri when I've lost one at that time before. Sorry if tmi but my bowel movements are more frequent today (think that can happen before af- and though cyclogest was meant to constipate?!) anyway I will try stay hopeful.. And will ask Louise as you say. Thanks for messages. Really appreciate it. Poor DH doesn't know what to say and nobody else knows yet as don't want them worrying.
Sasha - hope you're bearing up.. Will feel a long week until Thurs but at least you'll know soon, and everything crossed for you.
Hope everyone has a good week xxx

Hula2 · 19/04/2015 20:35

Rosa - just wish i could give you a big hug. It s just horrible when u see colour and it give s you that sinking feeling but it really can go both ways so hang in there and try and send your bean positive vibes. I also completely agree with drttc to try and stay distracted.

Are you one once or twice progesterone ? Is it worth ringing louise tomorrow and upping it if you re just on once daily. Wish i could speed up time for you. Xx

Drttc - sorry about the hives, hope you re ok.

Sasha good luck with the scan thurs, fingers crossed your bean is doing fine.

Hello to everyone else, hope you re all doing ok.

Drttc · 19/04/2015 19:46

I'm so sorry you're worried Rosa! I know you're aware color is perfectly normal....l but understand that women like us are particularly scared to it!

Whatever it is, it's out of our hands. Distracting may be the best medicine when your hands are tied. You're not alone, though. We're all thinking of you x

Rosa27 · 19/04/2015 17:32

Now had some worrying colour.. Very subtle but every time I've miscarried, that's how it started so have a horrible feeling.. So scared... Sorry me, me, me.. Not sure what to do/can do as too early to scan.

Rosa27 · 19/04/2015 15:50

Hi Drttc.. Not good.. Were you taking anything while you were away? I got similar after Humira but don't think you've taken that? Could just be a 'harmless' virus though but I'd see your GP ASAP to be safe.
Well I thought steroids were meant to give you energy- couldn't get up today! On a positive I used my last clear blue and got the elusive 3+. I wonder if I will make it for the next 2 weeks or so without any further insight until a first scan... Just praying I don't see any colour when I go to the loo.. Scared every time!
Sasha- any news?
Hi to Trying, Determined, Hope, Hula and everyone else xxx

Drttc · 19/04/2015 14:59

Just had a horrific hive outbreak, and have no idea why :( We estimated I likely had about 1,000 hives from head to toe.... Argh!!!

Drttc · 18/04/2015 13:34

Back from the most amazing holiday :)! So happy!

Rosa I know what it's like to rely on those stupid CB week indicators! I wouldn't worry about it staying at 2-3 wks for a few days longer than expected. There's so much variability with hcg levels!

Hope everyone is feeling relaxed and hopeful- wherever they are in their cycle/journey now. I've kept up to date for the most part with all your progress/results and things are really looking like they're getting somewhere for this group :)

Surprisingly after a lack of EWCMlast month I've just found some on cycle day 7?! Hubby enjoyed that discovery ;)

Rosa27 · 17/04/2015 21:09

Don't give up hope Sasha... Could you get hcg before thurs to potentially reassure?
I know how you feel having been there before. So hard to get the balance right between staying busy enough to distract yourself but not busy you're not relaxing and looking after yourself.
Today I'm 5 weeks and already had aches that didn't feel good. I did the clear blue hoping for 3+ at 3am this morning (thanks to pred I didn't sleep after that!) but it was still 2-3 weeks. I'm getting the train to London Wed and back late Fri for work and dreading it if feel as exhausted and stressed as this. It will be a very long wait to my first scan if I can get that far. In bed already with dark chocolate!
Thinking of you all and hoping you're all ok x

SashaKerr · 16/04/2015 08:22

This reply has been deleted

Message withdrawn at poster's request.

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