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

BABY

Hopender- (38yrs) 7 miscarriages, one DS, pred, cycolgest, baby aspirin and intralipids. Baby boy born!

2nd trimester

Rosa (39yrs) - 3 MMC
(11.5, 6.5, 7.5). 6 months ttc on treatment. On complex programme for high NK, cytokines and thyroid antibodies (hydroxy, pred, intralipids)- had allergy to Humira. SO programme (16 Weeks)

1st trimester

Sunny (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment). (9weeks)

TTC

Hula2 (39 years) - one DS (took 18mns with low amh but no other probs), one MC at 9wks, ttc no 2 19 mns (12mns since last mc), low amh, borderline cytokines, high nks, on complex nk plan (pred, intralipids). Humira completed. SO cycle 1.

Drttc- (28 yrs old) 4 MCS, 1 on treatment (6 wks, 4wks 2 days, 5.5 weeks, 6 wks), very high NKC on complex treatment plan: hydroxy 2x day, 25 mg pred from ovulation, add cyclogest on bfp & Intralipids every 4 wks until 16 wks.

SeekingMiracles: (31)
4 mcs DEC'13 (5.5w), JUNE '14 (blighted ovum 7weeks), OCT '14 (Chem) JUNE '15 (9w).
High NK cells and ProThrombin gene variant.

Swlondonnanny (39) TTC no 1 (since dec 2010) multiple chemicals /miscarriages in week 5. TTC naturally. Have high uNK cell, normal blood NKcells but high activity, really high thyroid antibodies, borderline proteins C and S deficiency , borderline high TNFa.
On prednisolone, fragmin and intralipids from BFP

Snoopy (29) ttc number 1 since sep 14.
Mmc at about 11 weeks dec 14
Mc at about 5.5 weeks feb 15
Mc at about 6.5 - 7 weeks may 15
High nk cells so the usual pred, cyclogest combo.

Morgan (30), 1 DD born 2013, then MMC Summer 2014 where heartbeat stopped between 8-10/40 scans & needed a MVA under local, spontaneous natural MC of probably a blighted ovum started at about 6/40 Autumn 2014 and another MMC Spring 2015 where again we got to just over 8/40 size & know that one was a genetically normal little boy.

WTTC

Determined123 (32)- awaiting (retest) results. 4mcs (2 on treatment).

Tryingno1 (31 yrs old)- 4 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6.4 weeks, 5 weeks. last miscarriage on dex,cleaxane,aspirin and IL intralipds. and - Ivf as low sperm. High nk cells, pa1 mutation. C4/m2 mutation. Hla dq match and low LAD.

Hey Snoopy! I know what you mean about still trying but not necessarily quite believing. That's how I felt even when I had my last BFP! I've had 4 mc all ending by about 6 weeks or earlier. 3 of them in the last 6 months. Back to ttc this month & now debating if I need to get intralipids in by Thursday... So hard though as of course there's no guarantee I'll even get pregnant this month!

I'm so sorry to hear you're covered in marks though! How traumatic :( If you don't mind me asking, what's your age again?

sorry missed ur post snoopy. Sorry work is pants, have they backed off with ur time off during ur last MC? its hard with all the tests and stuff. I feel FAT, i have SPOTTY skin and my hair on places i never really had it is THICK. i look and feel awful after being pumped with drugs and then coming of them. i didn't mind/complain when i thought it was preg. sounds like you could do with a little break from it all, and then see what happens? my stuff won't kick off till october earliest so I'm enforced on a break!

hey drtcc - i think u misread sunny message as mine! i have no scan!

firstly hen -
well done for going and getting through it. where was the need for the stupid comments?? why did she say that? is she slightly competitive and trying to say she got in first? UGH NOT NEEDED. i hope u managed to enjoy some of it.

secondly -
how ur feeling - its so CRAP. i had a bad day on sat. truly believing it may never work out, i go google mad when this happens and i spent ages looking up success/failures. i sadly did find a small number of women who didn't have luck :( but the overwhelming majority get there in the end.
yest and today I'm feeling better - i wish i knew what controlled it! i think failing on TX makes things harder..(and i know for me going through IVF and then failing has also compounded the crappiness).....i think we just have to believe that we have age on our side and as long as stay strong in our mind and keep going - one of them will just HAVE to work out. so keep doing things that make you happy so you can keep going with this journey. my NHS RM consultant said that by 4/5 miscarriages most women have had their baby?? plus me, u, seeking and Determined are all on no 4 and similar ages......we can't all be doomed! and I'm sure we will be fine soon (?!) PLEASEEEEEE!!!

thirdly -
when i saw MR S last year he said that chemicals were the one that worried him the most too. i don't quite understand what a chemical is though? (i think he said when someone has a positive for a few days and then it goes?) i mean was my last one a chemical? i had a positive test at 4, 4+2, 4+4 all darker. then blood tests at 5+4 weeks showed HCG only 418 - which is way too low. I had intralipids pre transfer and didn't do me any good! infact this is my earliest lost. i think having intralipids though before is a good idea to suppress ur immune system further......but you have to be ready/strong for a bfp so soon as u do you preg quickly. were you taking the pred before this time?

sorry for the rambling post to u!

hula - good luck with ur little ones op, hope it goes smoothly and u sleep the night before!

Whoops so sorry sunny! Think I got confused when I was I skipping back to for replies! Yes, of course you have your scan! How many weeks will you be by then?

drttc, sorry I get mixed up with the stats, how many of your losses have been before six weeks? If it were me I'd let DH decide and I know he'd say absolutely go for it, what have you got to lose (apart from £300 haha).
I hate people like that. I'm afraid the bitch in me might have come in that situation. Some women have no idea do they?

The thing is I'm not even massively sad. I just don't want to be poked and prodded anymore.
I'm wondering if I've reached the point where I would rather want to be left to miscarry repeatedly without all the trauma caused by doctors who don't really care. I've got marks on my arms and wrists from all the tests, drips etc that aren't fading. I haven't been to my GP or a hospital since the last mc because I physically can't do it. I'm not giving up, in the sense I'm still dtd and taking meds mostly supervised by DH, but I've realised that other things make me happy too and I'm making plans for a child free future.

Drttc please do have those intralipids before ovulation if you can.
I am impressed that dr s said that chemicals are the hardest to treat... I had my share of them... It is so draining, physically and emotionally as well.
Dr Ndukwe uses intralipids quite a lot, also Dr gorgy (CD10). So far it didn't work for me but I believe I need IVIGs anyway. The only problem I had with intralipids before ovulation was that it messed up my cycles quite a bit. Still ovulated but much later. But haven't heard about anyone else having this issue. My thyroid is really not good and I avoid soya because of that so guess loads of soya oil in my blood didn't help.
Snoopy I really hope you will get your sticky BFP this weekend. Re timing of pred - I try to take it as close to 9am as possible and at the same time every day. One day I forgot till lunch time and I really didn't feel well. My my adrenals -as well as my thyroid - are really sensitive to any hormonal changes...
Hula sperm DNA fragmentation test is very useful to have, it is not cheap though. Is your GP helpful in doing your hormonal profile? Like day 3 test?
Trying good to hear that you feel a bit more positive after your Fri appointment...

Trying, glad you're holding up okay. Good luck with your scan. What exactly is the scan for?

Hey Snoopy! I really know how you feel. I've been soooo upset in the last week & resigning myself to the possibility that it's just never going to work. It's so hard. I feel a bit better though as I follow this woman on YouTube who is about our age, has had 4 miscarriages that never made it through 7 weeks, and has now been 5th time lucky. It happens!

As for me... I need advice ladies!!! Dr.S says that we can either try one more time on the same programme, making the assumption that this last loss was ectopic or bad chromosomes OR we can have intralipids BEFORE ovulation. If we want to make this cycle we would need to decide today to get it booked... What do you think?

He just said that chemical pregnancies (pre 6 weeks) are the hardest ones to treat & the problem that keeps him up at night. Says he thinks I need more immunity support so early intralipids should help. I asked if he's had success with this approach & he says yes. At first i thought let's give it one more go. But now I'm thinking- can we take another miscarriage this month? :-/ I'm not sure.

Hen do was pretty bloody difficult if I'm honest. It had some lovely moments... But as expected loads of baby talk from the newly pregnant girl. It's funny because when they told us they said it was top secret & they were waiting until 20 weeks to announce (never believed it for a second), yet at the hen she very openly let everyone (she knew 4 out of the 16 people there) know she was eating for 2. She made of few predictable comments to me like 'oh, I'd be shocked if you'd participated in the sports activities' which really irritated me. She doesn't know me, yet openly talks crap about me like she does! I've been running 3-4 times a week for years- so why wouldn't I participate? Ughhhhhhh sometimes you just need to take a deep breath!

Aw sunny, you're doing so well! Scanxiety is a killer. It would be so much easier if we were all built like Teletubbies

drttc let us know how you get on. And well done on getting through the hen do. Were you drinking or were you being virtuous?

Glad I got to work at 0630 this morning, it's all such a mess, everything is so disorganised, makes me very sweary.

I shed a few tears with my mum this weekend, told her I don't believe any of this will work and that the best I have to hope for is that I don't miscarry on any important dates or on holiday in September. Which isn't looking likely anyway, supposed to test this weekend coming but zero symptoms. Oh well

Hello everyone! Hope you're all having a great start on this Monday morning!

I'm a large Americano coffee in to my London journey. Seeing Dr. S today! I don't really think there's anything additional he can add to my programme if I'm honest. But let's see... CD8 for me!

How are you ladies? Trying, Sunny, Rosa, Snoopy, Seeking, Sw? Anyone I may have missed?

I'm glad to be back from the hen do...!

sw I was just told make sure to keep your steroids and vitamins away from the thyroxine.

Even though I'm office bound at the moment I am starting work at 0630-0700 so breakfast for me is usually about 0515. I might try taking the steroids with my mid morning snack if you think it's better - celery, carrots and pumpkin seed butter, yum

Thanks swlnanny - dh had last test 6mn ago and all good and has had about 4x tests over last few years and all consistently ok tho never had dna fragmentation. Maybe if no joy next mn i should get him to repeat but with the fragmentation ?

Trying - that all sounds really positive and great your dh can do something to stabilise things.

Urology appt was good! He's put dh on tamoxifen with a hope it will keep his count stable rather than dropping to zero! He doesn't think its contributing hugely to the miscarriages as we made decent bladtocysts but suggested sperm fragmentatiom and anueploidy tests to check this out. We seeing him in a month for these tests and to see how dH soerm is doing on the tamoxifen. He gave us hope that we can stabilise things and get his sperm at good quality incase it is playing a minor role. Overal hopeful!
Hope u all have a good weekend :)

Swlondonnanny-im obssed with people getting their Dh sperm tested too! I went through 8 months no BFP a HSG and loads of bloods. To find out DH has severely low count count and morphology! He thought I was being weird asking him to have it tested as we had 3 quick conceptions before. He has testicular failure which was deveolped over the last 2.5 years we have tried. He's had 4/5 tests now and all the same. Everyone always focus on the woman and prods us! Anyways we have been freezing his sperm so will have enough for more cycles.
I'm off to London to now to see what we can do for dH sperm! I'll let u know if any vitamins etc are suggested

Snoopy I was advised to take pred in the morning, ideally by 9am as that follows the natural pattern of cortisol surge. I am also on thyroxine and was told not to take them too close together and take thyroxine about an hour before any food. So now take my thyroxine and 5.30am when DH alarm goes off and go back to sleep and have pred around 8.30am.
Were you told to take pred at lunch time?
Also everything crossed for you when you test and hope you'll get your BFP...

Hula it must be so frustrating for you. You have your son so you know your body can do pregnancy. I don't think AMH can say anything about egg quality. Have you had your vit D levels rechecked recently by any chance? Read somewhere that low level of vit D can make your AMH lower(how does that work I have no idea..) also how about your DH sperm? I actually went through 12 months of no BFP (after getting pregnant every few cycles before that) and even my GP said it was 'my fault' as I am older!!! Even had the stupid hysteroscopy to check what was wrong with me.... all hormones rechecked, did acupuncture 2x a month... everything was fine. Had massive argument with DH (who was refusing his test as I was getting pregnant before so there can't be anything wrong with his swimmers!!!!) and refused to carry on with TTC so finally he went for his test and was told that the only way for us to get pregnant was ICSI!!! Because of his count /motility...
Since then I always say to anyone who doesn't get pregnant for a while (6months) to have sperm test done...

God it really is mine field isn't it! Surely it's not supposed to be this hard! I'd never heard of cytokines and nk cells before all this! We may have all been dealt a crap hand but by god are we a strong bunch! I often think that I've been given this journey as Im mentally strong and despite my moments, I know I can get through this.

Just to answer the humira question as trying said its an anti-tnf drug so only applicable if u have high cytokines. Usually is a two injections given 2 weeks apart and cost £800 for this course and then you retest cytokines 2 wks later. In 5% of people they can go up and you then have to repeat it (another £800) which happened to me but supposedly still shows the same sucess as those that didn t flare. As you can only have 4 injections dr s didn restest my cytokines again. I think high cytokines are more related to infertility (which fits in my case as now 18mns since last preg).

Swlnanny - sounds a really diff descision re pgd on the embryos, would be very hard not to have any make it. I m 40 too and its difficult how it adds another question as to how much egg quality is an issue (esp as i have low amh) however i have a positive over 40 story that my mum told me today which is that my great nan had her last 4 kids at 40, 41, 43 and 45 ! And that was in the 1920s so likely suboptimal diet and certainly no prenatals vits or q10.

Trying well we went for initial consultation with reprofit in Czech Republic in may and talked about it with the consultant and it is not actually that expensive there. They recommended to freeze all embryos and test them(if there are any to freeze of course) and do FET with full on immune support. Unfortunately their full on immune support is only steroids/ 1 or 2 intralipids and blood thinners.
If my retest comes back fine than I am happy to go with their plan. And do the genetic testing. That's what dr Ndukwe recommended as well.
Unfortunately I can't find the clinic which would be strong on immunes and do genetic testing and we can actually afford.
In ideal world we would 'only' do IUI with Serum with their immune treatment. They however only offer immune treatment to IVF patients....
But back to genetic testing of embryos... from what I read it is not 100% reliable. Good embryos can get damaged when tested. They test on day 5 so you can lose genetically right embryos which stop developing before day 5 but might be ok if transferred on day 3. Which is OK if you have many embryos. But if we tried it at 40 we would do mild IVF and only expect 3/4 eggs top.
Also what would you do it you went through with it and ended up with no embryo? Try again? How many times? Would you go for donor eggs/donor embryo?
Sorry for such a confusing post, as you can see I am still trying to figure it out myself.

The humira is anti-tnf so it's used if you tnf is raised. Mine was normal hence not advised but I think argc are going to want to retest my immunes as its been over a year now...
London would u do ivf with PGd? Added cost but at least u wouldn't have to go through it wondering if it chromosonal loss or not? I regret not doing it now...I know I'm only 31 but maybe I just have dodgy eggs and dh def has poor sperm...the American babycenter websites use it a lot and ive read of 32/33 year old ladies with 50-70 percent of embryos being chromosomally wrong!

Oh Trying you will have your baby.
Sperm DNA fragmentation test is good to have and if it was high there are things you can do to improve it.
Please don't worry about your BMI, by all means go to gym and diet as it makes you feel better about yourself and it is satisfying to achieve something and be able to be in control of at least something in your life (helps me anyway).
I spoke to a haematologist and there can be so many mutations. Even if they don't find one there might be something they will discover in 10-15 years time. Was suggested to me to use clexane/fragmin continuously while TTC even though I tested negative for mutations but never had yours tested. Have high homocysteine/lowish proteins C and S thought....
If you are doing IVF clexane is usually part of the protocol anyway, isn't it, so that is covered.

I was also told that I need to be on some sort of blood thinners when on steroids etc as there is higher risk of blood clots when using steroids..
Minefield...
Determined I actually even contacted dr Braverman when I was really upset about all this chemicals a few weeks ago. He seems to be very good but when I calculated how much he would cost I just couldn't justify the consultation. He seems to be using Neupogen a lot + IVIGs and steroid/intralipids.
There are limited treatments anyway, the problem is to find out which one would /will /is working for me...
Hence the decision to go with Serum and pay the money I would pay him for consultation/further tests for actual IVF and treat immunes with anything available.
Think Dr beer said the success rate is around 80% with immune treatment but that is based on 3 IVFs or 3 pregnancies...
So that's what I am trying to do. Give a treatment 3 goes and if that doesn't work it is time to change and try something new.
It is great that your retest showed that steroids are actually working for you. What did they retest? Was it the NKcells activity? And how does it change you treatment plan? Does it mean you need to take pred continuously or still only from ovulation?

So what does Humira do exactly??
All this DQa stuff seems so confusing So hard to get your head round! I hope we all get synced bfps! I doubt I will. I reckon a few more cycles for me!

Thanks hula! Is an injection? How much is it?