Immune /natural killer cell treatment when ttc or pregnant (aka the 17th pred thread!)

[Hula2]

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

I'm not doing too good today. I really don't know wot it's gonna mean for us if this doesn't work out. It feels cruel to get a miracle bfp and then get taken away....my levels are due tmrw need to stay sane till then......hope everyone else is ok X

Awww Trying! The waiting and wondering must be agonizing :( Hang in there! Maybe remind yourself that it is, beyond treatment, out of your hands. Take comfort in that you're doing EVERYTHING and then some. You've not taken a single misstep- so you're entitled to a bit of peace I think. Be kind to yourself, and see it from an outsiders perspective. What would you tell a friend? To stay calm, worrying won't change a thing and... There's no reason why it won't work ;)

Hi Ellie
I wouldn't know how to interprit results. I've never really looked at mine in detail. I was told I have complex high nk. My treatment is baby aspirin, vit D, omega3, pregnicare. pred from ovulation for ten days then test and stop pred if negative - continue with positive till week 12. Start cyclogest from positive. Intralipid from positive and every 4 weeks till week 16 I think. I had a recent chemical on this treatment. I've now been put on hydroxy instead of pred because I was having side effects on pred - really moody and terrible heartburn. But I have to take pred from a positive.
Which clinic are you at? Did they not give you a treatment plan? Maybe you can take hydroxy instead of pred?

Hang in there Trying! The waiting is so hard but like Drttc says you've done everything you can! Thinking of you xx

Just went to clinic to collect a prescription
My tnf restest post humira was done on Monday-when I didn't know I was pregnant. It's back at 47-gone up from 33. I've absolutely devasted and feeling not at all hopeful. I obviously had a flare to the tnf and with those levels my bean has no chance :( I haven't had a call from clinic about the levels yet as the consultant hasn't seen them himself and he makes all the shots
:(
Literally don't know wot Im going to be with myself:(
How did I even get preg with someone such crazy high levels?? My nk cells are back tmrw...

I'm sorry Trying what's tnf? Is there any treatment for it?
But you did get pregnant! There's never a way of knowing for sure. I'm sorry this is so stressful for you. hopefully you'll get some answers tomorrow.

Mr s will have tested u for it..urs were obv normal so u don't know what it is! It's just like nk cells-high levels r bad news :(
Not sure what they will do but worry the damage by them is already being done. Intralipids help bring them down and I've had that done on wed given my history...

Hi Ellie, welcome to the gang! Sorry I can't decipher your results either - I just went along with what ever DrS said and luckily I seem to be fine with pred. Who are you with?

Trying You need to stop worrying Hun, it's not going to do you or your little bean any good. I'm sorry your tnf went up BUT you got pregnant despite it. That's amazing! Do you remember that video I posted a few weeks back - her tnf didn't come down either after 2 shot of humira, she got pregnant naturally and went on to have a healthy baby. It IS possible. You're on all the right drugs and your consultant will tweak it if he sees the need. It does NOT mean the end! You can't think like that. You need to calm down and know that this pregnancy has been given the best possible shot. Take it one day at a time. Today you ARE pregnant. And your little one needs you to stay focused and positive! We are all rooting for you. I don't think they should have given you the results without some one there to give you some answers to your questions. - that's not fair.

Thanks seeking, u r wonderful at making me feel positive! Oh I don't rem that video - were they raised too?!
Had a cry and pulled myself together
Can't do anything else, and I'm under great care. They will ring me tmrw with a plan based on my hcg.
Thanks once again girls X

It was a lady on a FB group im on. I'm sure it was raised tnf - anyway she had two rounds of humira and it didn't go down so they were preparing to go ahead with ivf regardless and then she fell pregnant naturally! She was ARGC also. So they can do it, if anyone can keep you pregnant it's them.
Sometimes a good cry is all you need to release a bit of that pent up stress. Keep positive lovely, you're on the right path x

Trying you've had the intralipids and you got pregnant dispite the high levels so it sounds like your bean is strong and you're having the best treatment. Deep breaths!! And I agree they shouldn't have told you without any support. Hold on in there we're all with you xx

Thanks :)
I saw the results on my notes while they were sorting my script! They came back yest....
Yes ur right seeking her levels were over 40 and she got nat preg....
Me and dh decided all we know is that hcg is rising as it should. That's good news and for now we just focus on that.

trying sometimes little beans can survive against all the odds. Look at the story they had in the newspaper yesterday- a female to male transsexual who has been taking all their medication for nearly ten years but still had womb, vagina etc couldn't work out why they were putting on weight, turns out they were pregnant despite all the male hormones etc and gave birth to a healthy little girl. Sometimes things just happen.

Do ARGC offer any sort of counselling? I don't know how you're coping with so much information. The only way I got through was complete and utter denial. I'm still wearing black knickers to prevent knicker checking!

Ladies, quick question, am I supposed to go by my dates based on ovulation or by scan measurements? The scans are measuring nearly a week ahead so there's quite a discrepancy

That's is Trying , focus on the positives!

Snoopy, I'd go by scan measurements now.

Thanks seeking , it seems odd because the jelly fish is measuring so far ahead when I know when I ovulated, but that means 14 weeks today, that's second trimester isn't it?

Trying - my TNF only went to 38 from 40 after one dose due my allergic reaction. None of us will likely know which combo of things came together to make a difference but just try believe it has :) I do know how hard that is.. I'm 36 weeks and lying in hospital waiting on a scan due to reduced movement. Hopefully all ok as fetal trace was but every day is a challenge. This OC thing was the last thing I needed.. Anyway great to hear your progress Sunny & Snoppy too - and keeping everything crossed for more good news before Christmas.
One silly thing I did the month we conceived was feng shui.. In the 'future zone' I put two Russian dolls and took the little one out of the smallest... Who knows?!!

Trying - i m sorry your tnf went up, i know how that makes you feel as mine did too but when i looked at it the research showed that women who flared did as well as those that didn t and the extra treatment would be ILs or ivg which you ve had so you re covered so i d just try and put it out of your mind, you re doing everything humanly possible. Big hugs.

Snoopy - the only downside of using the scan dates if you re pretty sure of exact ov is that when you re near term it will put you one week ahead and the whole are you overdue argument can become a bit of a battle re them wanting to do sweeps or induction. With ds i ovulated on day 19 (i was charting and doing opks so was sure of this) but they used LMP to date it which agreed with the scan and effectivly put me 5 days ahead. I went to 41+4 by this and did have some pressure to do sweeps etc. Just a thought.

Rosa - sorry you re in hosp but you re in the right place if you ve got concerns and even if bubs has to come out now you re only a week off of term so there s an excellent chance they will be fine but i understand how worrying it can be. Hoping everything is ok and you can get back home.

I ve had a worrying weekend as my friends ectopic nightmare is still going on as altho she had very low numbers they went up a bit after 48 hrs (130 to 170) shes been scanned again today and the sac in the tube is no bigger, she will get todays hcg result tomorrow but if gone up further then she s got to decide on sx or methotrexate. Anyone any experience of either ?

Hi rosa sorry u r in hospital-make sure u update us ASAP. Ur so very close to the end keep strong.

Thanks hula, I think I'm just worried they r sooooo high and I'm preg, not really got time to sort it out. Anyways tmrw is another hcg-Ill know more then

Xx

Ps sorry
No idea but I would have thought if Mtx was an option it's prob better than surgery complication wise? Hope she's ok x

Hula- I would guess the Mtx is the best option... She won't be able to ttc for 3 months but at least she'll have both tubes.

Rosa- hope you're staying as calm as is possible. Everything is going to come together- this is your time!!

Trying, one more sleep and then you can talk to the ARGC about your concerns, if they've treated other patients with your stats, and have your next hcg results. Getting a good nights sleep is what's best for you, and nothing will be changing during that time. Big hug.

Hi trying thanks for bringing me to this forum- sadly no one knows as this is such a tricky thing! Thanks to those who atleast read and responded.

I am sorry trying that u r having difficult time with raised TNF alpha but u know tnf alpha can rise even with minor things like viral infection or even bad mood! I once had tnf 917 off the roof really!, didnt believe in it..repeated it in 3 week's time..poof it was 52! Magic!! I was having bad flu symptoms (Plus depressed after a 22 weeker loss) that time and i was not warned abt this test. I know this may not be exactly ur case but what i mean is pls dont give up all ur hard work just on that one test result. I am a bit sleepy but hope i'm making sense to u. Good luck for tmrw hun xx

Ps: all the best Rosa. Its nearly term so hope nothing to worry abt xx

Rosa all ok I hope? When can u go back home? We are all rooting for u! Xx
Ellie so sorry to hear about ur loss :( I hope u find this thread supportive and helpful it's been a lifesaver to me in an attempt to keep me sane ! Are u ttc at the moment?

awaiting hcg result....consultant saw my tnf and wants to do any plan changes based on my hcg today. However which such an insane tnf I'm being cautious....lets see wot the phone call brings!

Rosa - hope everything is ok.

Trying - what time should u get your results ? Really hoping you get a good rise. Hang in there, you re doing great.

Ellie - sorry to hear about your losses esp 22wks that must have been so hard. Which clinic are u under ?