Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Wow so close! I didn't have much organised until about 35/36 weeks partly because I didn't want to admit to myself that it was all going to be ok. In the end I had to wash babygrow etc as time was running out. I found it easier once I'd finished work though.

I went out with my mum yesterday and brought some more bits. But I think mat leave will be be washing and organising... Scary that it's now so close! Can't quite believe it!

So excited for you Seeking!

Hi Sunny! Hope all is well!

Baby is 4 weeks old and hello sleep deprivation! It's no joke. Thank god for my DH... And those people who say 'sleep when baby sleeps' obviously don't know what it's like for a baby to prefer your arms to the cot (pretty standard newborn behaviour I thought)!? That said- love him sooo much and we're so happy he's here safe with us Wouldn't trade it for anythIng! He's worth every pence, test, every injection, and sleepless night

Drttc- I feel your shatteredness.. My baba has reflux and I've had 9 months of him sleeping in my arms or only when he's moving in a pram.. But he's starting to do the first half of the night in a cot!
I'm the same as Sunny & Seeking with pred- had 8 cycles before got lucky, so 8x 2 weeks and generally ok though some insomnia. I tapered from 10 weeks though and during that time was crazy hungry and put on quite a bit of weight .. Obviously a small price to pay. I had also taken hydroxychloroquine for 5 months until the month before I conceived so not sure if that and the 8 months of pred had an accumulative effect.. What do people think?
I'm keen to know as I'm starting to consider being brave and trying for a second.. But I'm 40 now and also not sure can do all the Londom trips (from Scotland).. But my nhs consultant has said she would prescribe pred but only from a BFP to 10 weeks as Prof Quenby does... I'm worried I'd need from ov and the intrallipids etc as had a complex immune profile.. Would you risk it to save on stress of travel etc (ok money too but of course can't put a price on reducing the risk of miscarriage). My head is spinning!

Hi to everyone - I still see so many names I know xx

Drttc - so happy for you
Seeking - can't wait to see you back here with your amazing announcement
Sunny.. How are you doing now.. Another crossing your mind yet? X

Hey Rosa! Sorry to hear about the reflux :-( But glad the sleep situation is getting better!

Dr. S definitely told me he believed Pred had a cumulative impact. I was also on hydroxy (double dose) for 6 months before this successful BFP... And I do believe that made a difference. However I was also on loads of other supplements (as many of us are) so who knows if one of those helped too.

Rosa- trying for number 2 sounds scary and exciting all at once! This is all such a roller coaster! Could you ask Dr. S to just prescribe you the same programme and find intralipids locally?

Hey Drttc and Rosa so lovely to hear from you both.
I can only imagine how awful sleep deprivation is gonna be and reflux! My friends baby has had awful reflux too. Hats off to you both!! Super mamas!
I was also going to suggest what Drttc did Rosa - ask DrS to prescribe for you? The trips up and down must have really taken their toll! But exciting that you're considering number 2!

Thanks Drttc and Seeking... The only thing is I think I need to see Mr S regularly to get the prescriptions ... Which is initially plus every 2 or 4 weeks until 16 weeks for scans I think ... It's just quite a lot from Scotland, especially now I have a wee one too. But if it's what's needed then, maybe that's what I'd need to do again. I'm still feeding my baby so no way I can benefit from an accumulative effect of anything anyway.
Drttc- sorry my brain is like mush now, but did you have a miscarriage on treatment? As you say no way to know what finally makes the difference but really hard to try again and not mirror what you did when it worked ... I just don't know what to do ... Prof Quenby gets lots of success with only pred. I also had thyroid meds and cut out gluten and dairy in 1st trimester.

Maybe see if he'd be happy to prescribe over email and you to see local EPU for scans and then forward on to him? It's a lot to expect... I don't know how you managed last time!

Rosa- wouldn't the regular Dr S visits be more for when you've already got your BFP? So could you start treatment and then once you've got your BFP sort out what you can with him?

Seeking - I know, it was crazy.. Long journeys just for a half hour appointment! But fortunately sooo worth it.
Drttc- good point.. If I start with him then I get ongoing pred from ov .. And then if he's not ok with me getting scans up north, my consultant up here would prescribe anyway from BFP. Hmm so perhaps just one London trip... Oh but then there is intralipids... I'd have to find somewhere up here or risk not taking them..
Thanks for advice :) xx

Hello all, can I join? Just got a BFP from IVF with steroid treatment due to a high number of antithyroid antibodies (>1300). Feeling all a bit surreal after 3 years, 1x IVF chemical pregnancy and lots of issues with my autoimmune disorder. Am on 25 mgs per day.

Spoke to clinic yesterday who said that they would wean me off at 10-12 weeks. This scares me! Will obviously speak to the consultant nearer the time but worry that the antibodies will go on the rampage again!! Any thoughts anyone? Thanks in advance!

Rosa- I think that's a good plan. At least that's what I am likely to try when considering #2....!

Jenbot- of course you're welcome to join! And congrats on your BFP! We all worry when being weaned off steroids. But you'll find your consultant will explain that by that time the placenta has taken over and the steroids have served their purpose. I've heard many many stories- but not once have I heard of someone having issues with their pregnancy due to being weaned off steroids in the second trimester.

Welcome jenbot, congratulations!

rosa cannot believe your little one is nine months already! Regarding the reflux, have you tried cranial osteopathy? It's been recommended to us by a lot of people and especially because edie was an 'instrumental birth'. She's 16 weeks now and the reflux is improving but we shall see if this helps.

Edie is 16 weeks now and technically she sleeps through the night because she can do five hours in a row. Of course it's a shame it usually starts at 8pm and then up every couple of hours from about 0130am hahaha but I feel bad for complaining now

I'm also thinking about trying for a second. I've had a prescription for the pill I haven't collected for ten weeks. I'm breastfeeding so I don't think anything will happen. If I was already having intralipids do you think Dr s would want me to retest?

Hello rosa
Is it worth asking your GP to prescribe for you? I just changed Gp and this one is so helpful and prescribed anything I wanted! It makes like so much easier. I also asked around locally and found a clinic that prescribes intralipids as it's difficult for me to go and see DR S every time

Good luck

Lovely to hear from you rosa and drttc!

Nothing prepares you from the sleep deprivation! We were quite lucky that Toby pretty much stuck to every 3 hours for quite a while and then Early on we introduced a dream feed at 10.30 to try and get him through the night longer (it worked) DH did that feed so I could go to bed at 9 and then not get disturbed until around 3am so at least I got a block of sleep! Things are much better now as he goes down at 7 and then generally doesn't wake up until 6.15 the next morning but it's only been that way for the past
6-8 weeks.

We did cranial oeseoparhy as Toby was a bit colic-y and also and a bit of reflux, definitely made a difference and he was so much better after a couple of sessions. In fact if I had another baby I'd probably taken to anyway just to see if there was anything they could do!

In terms of ha in another, DH and I have talked about it, we are both only children so we are happy if toby is our only one, but we would prefer to bea le to give him a brother or sister as he has no cousins or any ing so a very small family. I think it's likely we will start trying next year at some point hopefully. Although we are about 2 hours from Epsom, it's going to be a right faff especially with a little one to sort oUT as well, but I'm hoping my dr will prescribe most the medication again but I'll only be able to get the hydroxy from Dr s so don't think I'll beagle to get out of seeing him . I'm also going to try and get an appointment at the hospital where I had toby to see if there usa y chance they would give me the treatment I needed.

Hello ladies. I had my appt today where I received my blood test results and I think my head is spinning from all the information. I have been diagnosed with very high TNF alpha IL 10 (normal result is 13.2 - 31 and mine was 57.8!)as well as high NK cells (283 or 13.2%). As my result was very high my choice was between Humira or steroids (less aggressive approach). Has anyone had a similiar result or taken Humira? I think we will go with steroids from now as I'm a bit scared to take Humira. If steroids don't work I'm not really sure what we will do. If I do get pregnant then it's cyclogest and intralipids. Anyone with similiar test results and positive stories? What side effect did you experience on these drugs?

Snoopy & Sunny - I might try cranial osteopathy too... Crazy in still having to bring him in to sleep with me at 9 months (though secretly love it, even if I am shattered!)
Carryon- thanks for suggestion.. My GP wasn't keen but maybe now I can show it worked they might reconsider.. Worth asking!
PJ12 - your profile is almost identical to mine and I had a wee boy after 8 cycles last November. I had an allergic reaction to Humira but this is very rare... But point is I had success without it.. I did take hydroxychloroquine for 5 months but it was making my hair fall out so stopped that too a month before I conceived. So it was pred, intrallipids and cyclogest that worked for me... And this, at 39 years old after 3 missed miscarriages (had seen a heartbeat in all). Hope that gives you hope...

Ps I was crazy hungry and did have insomnia on pred when I took for 10 weeks of preg (not for the 2 weeks from ov when didn't get BFP)... But I just accepted it and ate too much chocolate .. Still about a stone overweight but I'd do it all again and in fact I'm thinking about doing just that at the end of the year

Well, I've started it and I feel fine. A few nights where it has been difficult to get to sleep but as they coincided with going back to work ( in a school, after summer holiday), it could well just be the wired feeling I get from that after a summer break. I'm not hungrier than usual - the opposite in fact. It was a scary step to start taking it, thank you for the reassurance.

Hi! I haven't been on for a while for one reason or another, its been a bit of a crazy time. Congratulations to DRTTC feels like that went mega fast but I'm sure it didn't feel like that to you - so pleased for you!
Hi to casiopeia saw your post about your results and in a way its a comfort I guess that you know that it wasn't randomly unexplained which means the method has every chance of working for you. I send you positive thoughts and strength.
Hi to seeking not long to go now hey for either of us!

Hi to all everyone else and the newbies on here. There is so much knowledge on this board, you are in safe hands and will get there in the end.

I am 38 weeks tomorrow and have had a bit of a crazy time in that the baby is sideways and I have been nearly admitted to hospital a number of times. I was also booked in for a c section Wednesday but they cancelled it last minute in case the baby's lungs weren't developed enough. So a turbulent time with that old nagging and irrational doubt coming in "see? told you it was too good to be true". I wont let it get the better of me. I have been booked in for next Wednesday for my c section and I am feeling anxious but positive. I will update again as and when she arrives. x

Thank you very much Rosa. That does make me feel better. Was your TNF alpha extremely high as well? I think that's what's worrying me, it's not just high it's very high. I'm worried that pred, intralipids and cyclogest might not be enough to bring it down. What is hydroxychlorquine and what is it used for? This whole process feels a bit surreal to me as I have a 2 yr old daughter that I got pregnant with on Cycle 2 and had the most straightforward pregnancy
YompingJo I will be starting my steroids in about a week's time and I'm also feeling quite nervous. I'm glad you are feeling ok on them.
Tumtimes1 very best of luck to you next Wednesday. It will feel amazing once you have your little girls in your arms xx

Glad you're feeling well on the pred Yomping.
*
Pj* - sorry you're worried by your results but there's is proof in the pudding that DrS' protocols work in Rosa and her little one. Drttc did Hydroxy too.

Wow tum, that's amazing!!! Good luck on Wednesday!!! Mine is also breech - hoping she'll turn on her own otherwise it'll be a c-section as well.

Hi All. Just jumped on to say I've started the hydroxy and it's been 2 weeks now. So far no side effects apart from maybe being a bit spaced out.

My problem is high NK cells and high thyroid antibodies which most likely caused my mc at 20 weeks and another at 19 weeks.

I've read on here that Dr S treats these things with both hydroxy AND steroids, but I haven't been told to take steroids....so not sure why others need both but I don't.

Been freaking out a lot recently though...not sure I can face another late loss and I'm convinced I will be the one he just can't help.

One more thing re work though. Did anyone change career or lessen work hours after recurrant mcs and before starting treatment? I'm slightly blaming my hectic lifestyle for my mcs - they prob had nothing to do with them though.

Pj12 sorry for delay ... My TNF was in 40s so admittedly not quite as high but I was on the complex program and in the end only took drugs for non- complex as my body reacted to Humira and hydroxy. So try to stay positive. Personally I felt better cutting gluten and dairy for the first trimester as my accu lady told me if you've autoimmune issues then it really helps. I also found accu was helpful for my sanity ...
Marmite... I considered but couldn't afford it... Hence paying more for accu to try to deal with stress of if all. I have a nagging worry work stress contributed and / or exacerbated my immune issues .. Horrible to think that.. But we all know stress had a very real impact on the body, emotional and physical .. So anything that can help get you relaxed. I also listened to a 10 min guided breathing free app every night called 'at ease' ... Worked for me, but you have to find the things that work for you. Bottom line is your hectic lifestyle won't have caused your miscarriages but everything you do, eat, think etc contributes to how 'baby friendly' your body is.. So just do what you can and accept you can't do it all or you'll stress more! Xxx