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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

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:
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5
Drttc · 26/07/2015 14:04

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.

Snoopysimaginaryfriend · 26/07/2015 13:27

And another positive opk this afternoon Hmm 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?

Hula2 · 26/07/2015 11:07

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.

Snoopysimaginaryfriend · 26/07/2015 11:06

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.

sunnyday01 · 26/07/2015 06:56

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?

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Determined123 · 25/07/2015 23:11

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

Snoopysimaginaryfriend · 25/07/2015 20:52

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 Sad

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.

Rosa27 · 25/07/2015 20:39

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 · 25/07/2015 17:07

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

Drttc · 25/07/2015 17:05

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

Snoopysimaginaryfriend · 25/07/2015 16:18

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?

YompingJo · 25/07/2015 13:20

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

Hula2 · 24/07/2015 21:04

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.

swlondonnanny · 24/07/2015 20:20

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.

Snoopysimaginaryfriend · 24/07/2015 19:19

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

Snoopysimaginaryfriend · 24/07/2015 19:17

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.

swlondonnanny · 24/07/2015 17:34

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

Snoopysimaginaryfriend · 24/07/2015 17:27

Hello all, just need a rant.

So after nine weeks (average 22 day wait my arse) I finally received a letter from the NHS inviting me to an appointment on 25th september at a fertility clinic, not a specialist RMC as I was promised.

They also included a lovely pamphlet, full of grammatical errors, pointing out that I should consider abstaining from cocaine, heroin and marijuana because they could have a negative affect on a foetus.

I know these pamphlets are designed for a wide audience but really?

It doesn't even say what I should do if I get pregnant in the meantime. I feel so let down. All the reassurances from the GP, all the promises of 'extra support', they were just saying what they had to to shut me up weren't they?

I know there are people in worse situations than mine and I am very lucky to be able to afford to see Dr S privately but I feel utterly defeated right now.

Good luck with your scan tomorrow sunny, all my fingers and toes crossed for you.

swlondonnanny · 24/07/2015 15:37

Sunny best of luck for tomorrow, hope all will be fine.
Jo is the consultant you are going to see NHS RMC one? If yes they should do quite a lot of tests to look for blood clotting issues etc. I am so sorry you go through all this. I am going to be 40 in a few weeks and had multiple chemicals (losses the same as you timing wise).
If you are happy to wait for your consultant appointment than based on what s/he suggests you can decide to have NKcells checked or not. If you have any autoimmune problems or family history of it I would recommend to have it tested.... meanwhile if you are not taking it yet you could try coenzyme Q10 which is good for egg quality (I am not saying it is your eggs but I get it mentioned at every NHS appointment)
Hula thank you. It feels like forever and we are nowhere closer to any solution... intralipids are actually the cheapest of all the immune treatments (1 bag is around £10 it is the clinics who charge so much just to administer it...) I was having them once a month before my retest. Also I used to have quite a lot of joint pain (knees, wrists, shoulders...) which stopped since I am having intralipids so clearly they are good for me... Hula was it you having humira recently? If yes why was it? Was your TNFa too high? Also fingers crossed for your scan, hope there will be nice folicle or 2 there...

AFM I just received my retest results and they are not good. Well while INFg is nice and low my TNFa is too high now.... Have had enough of my immune system now.... feels like I don't have any energy to fight anymore...

sunnyday01 · 24/07/2015 10:23

Hi All

hope you are all doing ok, haven't checked in for a few days and there has been a lot of discussion. I am convinced we are all going to get our happy endings no matter how long it takes us to get there. It can be so hard at times, even now I am pregnant I am scared and worried - rather than worrying about getting pregnant, i'm worried about staying pregant and the baby growing ok.

I have my scan with mr s tomorrow, hopefully all will be ok, totally got scan fear again - i want the scan to reassure all is well, but i'm so scared that all is not going to be well. DH doesn't really get it, i have told him i don't think the worry will go until i actually have the baby! its not all consuming worry, just at the back of my mind. I'm feeling really good over the past week, the tiredness seems to have gone and feeling a bit like my old self. I'm hoping this is because the symptoms tend to disappear at the end of the first trimester rather than anyhing else. Also weaning off the steroids - 3 days to go!

OP posts:
Hula2 · 24/07/2015 07:32

Welcome Yomping Jo !

So sorry for your losses, this is a tough journey and i am also 40 ttc no 2 so understand the age concern. I think its common that its assumed egg quality is the issue but quite a few of the older sucessful ladies on here actually had immune and/or clotting issues (hope, rosa, freelance girl). I found a book called 'is your body baby friendly' by dr beer a really useful read to understand the immune stuff and how it can happen after an apparently fine first preg.

Good luck with your appt in sept and i hope you can find the support you need on here, all the other girls are lovely.

YompingJo · 23/07/2015 20:45

Hi ladies.

You, and this thread, were recommended to me by a friend. I have a 2 and three quarter year old DD, and am ttc number 2, but have had 3 early miscarriages in the past 6 months, all between 4 and 5 weeks. I have an appointment with a consultant in September, and a head full of anxiety, desperation, worries and hopes. I am 40 and my first pregnancy went without a hitch - conceived on second month of trying. No idea what on earth is going wrong this time. I want to see the consultant before I consider going private for nk cell testing, and I think my luteal phase is OK at around 13 days.

Any advice, ideas for what to pursue, general handholding massively appreciated - this is all so hard and unfair and I have a horrible image of shrivelled ovaries full of rubbish-quality eggs, and of time running out.

Thank you in advance - always find mn a bit intimidating and hoping no-one pulls faces at me.

Drttc · 23/07/2015 20:36

Oh right!! For me the wtf cycle is the one AFTER using pres for 1 cycle. My cycle directly carrying on from mc is usually totally normal. Figures!

Well if that was your wtf & you weren't trying - it's good to get it out of the way! When you get back to ttc hopefully you'll be running as normal (cycle-wise)!

Snoopysimaginaryfriend · 23/07/2015 20:22

Yes. As in the time between the physical miscarriage and the first period post miscarriage.

Drttc · 23/07/2015 18:16

By wtf cycle do you mean the one after your miscarriage?