Immune /natural killer cell treatment when ttc or pregnant (aka the 16th 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

Snoopy so sorry about this... Please do call them and check. I had the same thing happening to me. Was referred to wrong clinic twice!!!! And what a waste of time it was. Insist on RMC. Will be waste of your time and very upsetting if you end up in fertility clinic, I nearly cried. Also all the waiting for appointment will start again from September. Or you can go back to GP and insist on being referred properly to RMC. My GP had no idea they are not the same and actually googled it in front of me!!!!!! Loads of hugs

Thanks sw. I'm sitting here in tears now. It just keeps reinforcing to me how far away I am from being ok with all this and how much in pretending just to get through the day. I'm so sorry you had to go through this as well.

Brilliant, my pregnant sister in law just arrived. I don't know what I'd do without you lot.

Snoopy yes we all get good at pretending and denial. If we want to cope. SIL will leave, don't worry. I find it easier when I keep telling myself that they are not having my baby and them having a baby doesn't change my chance of having one (I work with newborns/babies/toddlers and there were a few born on my due dates I looked after. First I cried a lot but it helped that I kept telling myself all this about them not being my babies etc. It did get easier after a while) I don't mean to lecture you just sharing what helps me cope....
Also I don't know which part of london you are but if you are in south west ask to be referred to St George's RMC, they did loads of tests for me, much more thorough than St Mary's in Paddington.

Snoopy - the nhs are really hopeless sometimes, it seems you ve got to shout and scream to get anything done properly and within any decent time frame, it really should nt be this way. As swnanny says i d go back to the gp and ask to be referred properly and prob worth having a clinic you can say you want referring to. Doesn t dr s do some nhs work at epsom ?

Swnanny - sorry about your results. Yes I had two rounds of humira (4 injections) for high cytokines, actually my were nt that high (32 and went up to 34 after 1st round of humira which can happen in 5% of people but if you have 2 further its meant to have the same success level) but since they tend to be linked to infertility (i think they can affect egg quality) and my biggest prob is even getting pregnant then Dr s recommened it. To be honest i was crapping myself about taking it and put it off for a few months (data sheet is a bit scary) but in the end thought i had to just go along with his advice and actually had no issues with it. Has is helped ? Who knows i ve not got preg yet and they dont bother restesting after the second round as you can t have anymore anyway so i don t know if my levels are better now but the beer book said its usually about 3mns after taking it that people start to get preg (my last dose was 6wks ago). It also is meant to last about 6mns so i m hoping it starts to do some good soon.

Sunny- good to hear from you. I felt totally normal in second tri so don t worry about that. Really hope all is well for your scan tomorrow.

Hula2 - thank you, and I have that book - must get round to actually reading it, not sure it's going to help me much just sitting on my bookshelf.

swlondonnanny thank you for the tip, I'll add Q10 to the list of pills to pop. My kitchen is starting to look like a pharmacy... no history of autoimmune problems that I know of but I have regular thrush and have been plagued by vaginal strep B (it's bloody delightful being a woman, isn't it?) and I wonder whether that may have taken hold due to a weak immune system. I'm going very low carb since sugar and me aren't a good mix, in the hope that that might help my immune system. Yes, the consultant is at the local NHS miscarriage unit

Thanks everyone. Sorry for the woe is me. And hello to yomping, sorry you find yourself here.

Well today was test day. I usually have a 33 day cycle so started the pred on cd 21 and had my last dose yesterday, cd 31. I used some internet cheapies and got some inconclusive (maybe evap) smudges. Then the ewcm started up again so I found one of my cheap opk tests, and it was positive straight away, on cd 32! Wtf has happened to my cycle?

Just wanted to say good luck to Sunny with your scan today!

Whoa strange that you've got a positive opk Snoopy! Guess it's timed to DTD? Have you done a pregnancy test too?

Hi everyone... I wrote a long message last night with individual comments and my phone went blue screen and only just back.. And I see nothing was posted or saved :(
In a nutshell I hope you're all doing ok (and I know that's all relative) no matter where you are on this journey. I'm still incredibly anxious and emotional but trying extra hard now to be positive .. 20 weeks today and so far so good (scan was yesterday). Hoping Sunny pops on with good news too to keep everyone going.
I'm still struggling to believe it could be ok for me. I had 9 months of trying after my miscarriages with an array of drugs, some which really didn't agree with me. I felt sure it wasn't meant to be/ I was too old/ something yet undetected was wrong. You just never know .. As we all say all the time - it's so important to not stop living through all this.. But don't give up either if you feel able to keep going.. For the vast majority, it's a numbers/ waiting game. Hope your weekends are going well x

drttc the pregnancy tests were negative so I must only just be ovulating which means we have completely missed the boat with this cycle. it completely messes up all the holiday dates though and even worse this is looking like a 46 day cycle

rosa so glad to hear everything is going well. Hope you can finally start to enjoy your pregnancy a little now.

sunny hope everything went well.

Hey everyone and welcome yomping, you're in the right place with loads of supportive ladies!

Lovely to hear your progress Rosa...can't believe it's 20 weeks! Wow!
Hope everything went well sunny ;)

Snoopy if it's any consolation (prob not) I'm on day 49!!!!!!!!!!! I've actually had shorter pregnancies ;) I believe it's due to the steroids. One day this week I took an opk just to see and it was quite dark (not darker than control) and that eve my stomach was huge and had lots of cramping. Thought it was my period but no. It's calmed down now and opks feinter so I'm hoping for af soon. Had loads of weird ewcm too. Anyway that's a rather long way of saying I think the steroids can cause a hell of a lot of issues. Do you temp as well as opk?

Oh another thing sometimes (not sure how true) opks can be a bit darker when prey and also just before AF. I read that do not sure how much truth in it xx

Hey all, saw Mr s yesterday in his new offuces in Epsom (very nice!). All was still looking ok, like rosa I'm still anxious but trying to be positive! Next scan in a month with Mr s which if all is ok will be my last with him!

I agree with rosa, you just have to keep going, I was at Rock bottom the week before I found out I was pregnant. I believe that we will all get our happy ending at some point x

I was lucky that I didn't have issues with steroids messing up my cycle but isn't worth asking if you can start them once you have a positive test or maybe take hydroxy Instead?

Great news sunny, so pleased for you!

drttc I don't know what to think. This opk was definitely positive. Now I feel like we've missed the mark this cycle because we've only been dtd every other day after we thought the 'fertile window' had passed. I will try and speak to Louise tomorrow. Temping was always an issue on shifts and even now I'm working regular hours I really did not want to get sucked into tests and temping and generally obsessing about pregnancy every day. I just don't know what to do anymore. This seemed like such a straightforward answer and I'm crushed that the very first month is fucked up already.

Sunny and Rosa - such good news to hear your pregnancies are both progressing well. Its great to hear your updates and helps us all keep the faith that it can and will happen.

Snoopy - what a pain with your cycle. Maybe you hadn t ovulated when you thought you had before starting steriods and then the steriods just blocked it until you stopped now. Hopefully next cycle will go back to normal and then maybe consider taking them from positive test. It seems this is a common issue as you, me, determined and drttc have all had this happen and some docs only use them from positive test and still have good results.

And another positive opk this afternoon we dtd yesterday and and two days before that I don't know if every other day will be enough. Today we argued because DH turned around and said 'I don't know why you're complaining, it's not difficult just to take a tablet every day is it?'. Of course I completely overreacted. He just doesn't understand and I guess he never will.

i didn't realise how many of you were struggling with cycles lengthened by pred. It's so annoying because I was thinking 'well at least I get pregnant quickly'. I don't know what's going to happen at work because OH only recommended an office role for five months which would have covered the four months Dr s said to try for but it's not going to be enough now. Hopefully I can get it extended.

hula how are you? When's your next tww?

It's so frustrating snoopy. Being on Pred was the first time I didn't get immediately pregnant when trying. I was 3 out of 3 cycles with a BFP before Pred. Then it took 3 months (with noticeably strange cycles) to finally get my 4th BFP, which only really happened because I'd skipped Pred the month before to regulate my cycle.

I'm not particularly hopeful for this cycle so I'm thinking I may only take Pred for 5 days (out of the 10) in hopes it won't ruin my next cycle. These side effects make a stressful situation so much tougher, doesn't it?! I'm always questioning my decisions. Should I have skipped Pred all together this cycle to preserve my chances next month? Should I completely stick to protocol because this is what Dr S recommends? I just don't know.

I m good thanks Snoopy, day 12 tomorrow and have my scan at lunchtime. Last cycle i triggered on day 11 so expecting i ll be told to trigger fairly soon after the scan so in tww in a few days. No positive on an opk yet which is good as was worried i might ovulate b4 the scan and then the scan would be a waste of money.

Dr - i can really relate about the pred dilema. I was wondering about trying it again and maybe taking a half dose as i ve seen some people being given just 10 or 5mg. But it really screwed my cycle and took about 3nns to get back to normal which at my age i can t really afford to do. So difficult to know whats best.

Bugger, spoke to soon ! Just got a smiley on a cb opk, was negative this morning so hope my follicles can hang on till my scan 2morrow. Anyone know if i ll still be told to do the trigger shot ?

Hey Hula- do you mean a flashing smiley or static smiley? It's static you may still have 30+ hrs before the egg is released so the scan may be okay!

Sorry in reference to the trigger, I reckon you could still get the shot if the follicle hasn't released yet. Do you think you'll need it?

The ones i m using jusy have either a circle or a smiley (so just testing LH), so it says expect ovulation in next 24-48 hrs. We have dtd today so think we re covered in that respect i m just hoping i m not gonna pay £200 and not be able know if managed to have more than one egg. Have a had a natural cycle scan before that was 24 hrs after a pos opk and i had already ovulated....altho they could still see it.

Hi ladies!

Glad your scan went well Sunny and that you're still progressing well Rosa!
Sorry so many of you have screwed up cycles because of pred Hope af or a bfp arrives for you all soon.

AFM- had my appointment withDrS on Thursday, kind of been on a downer since then. Karotyping came back that baby did have a chromosome issue, which is what I wanted to hear, but it was an incredibly rare one. So now he's recommending DH have parental karotype tests done as we could be carriers of a translocation.
Thankfully we did have those tests done on NHS back in March (results never came back). So now I'm chasing them. DrS,luckily also knows my NHS consultant so has chased with her too.
Naturally I've googled the life out of it, absolute horror stories out there. And obviously I'm assuming the worst. Just want to know if DH and I are ok.

We have got the puppy though!! He's gorgeous. Such a good boy. We're in love!

Ah I see! Tough one. Maybe give them a call in the morning to ask advice? Or just keep your fingers crossed for tomorrow... I'd probably be so curious I'd have the scan anyway. But I'm too nosy!

Seeking that is some very intense news. I thought the NHS covered IVF for people with translocations though? IVF with PGD testing to make sure the embies are translocation free?