Immune / natural killer cell treatment when ttc or pregnant (aka the 15th 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

And yes, please keep us updated on the film!

Evening everyone.

seeking that's good news, got my fingers crossed for you.

sunny did you start your meds at ovulation or bfp?

Dr s' plan for me is 25 mg of pred from ovulation and to continue on that dosage and add intralipids from bfp.

I'm a bit worried about having to use opks etc did you all use them or did any of you just estimate when you would ovulate from typical cycle length ( for me that's cd19 )

Also just doing some research. I'm apparently heterozygous mthfr, which Dr s wasn't worried about but I've picked up some methylfolate instead of folic acid just in case. I've also come across a supplement called wobenzyme which gets very good reviews with regards to helping people suffering from recurrent miscarriage due to immunological problems. I wonder if it's worth trying them?

Thanks Freelance, that's really useful. Great news about the film!! By coincidence a copy of my results came through in the post yesterday (I've only just asked for them after having the news over the phone that my cytokines weren't responding well to intralipids and pred and I needed another test after 2 weeks of pred to see whether ivig was the next step or not). After being told they weren't the 'highest they've ever seen'but are high I've spent the past few months taking a break but now it's time for action...

Looking at my results (not that I really now what I'm looking at everything was slightly better, thyroid antibodies gone down (still far too high) but one was now in range!!! Nk counts were still the same (borderline if not all a smidge lower) it's just the damn killing power...something somewhere is making them more aggressive and the drugs aren't working . Hydroxy has been mentioned but the looking at the tests results ivig is the only thing that now reduces the killing power!

Snoopy I take methyl folate (amongst the rest!) Dr s told me it's not an issue (I still take methyl folate just incase though..damn Internet). Heard of wobenzyme too but not done anything about it it seems some ladies may have success with it!

Re ovulation I used opks because I ovd late and wanted to be sure...I would take my steroids 2 days after just to be 100% as I found my cycles a bit weird when I first started pred.

Thanks for your support ladies...you've all got so much bigger things going on right now and you are always here to help...hope your having great bank hols xxx

Morning determined
Sorry about ur results. What a pain!? So r the levels nornal, but the ones that are there just very strong? Does Mr s do ivig? I've read a lot of stories of women who had sucess with ivig-mainly in the ivf world as the argc who get amazing results use ivig not intralipids. So it obv does work? But I can understand ur worries in wanting to go down that route...
Freelance all the best with ur film, I think it's an amazing idea so many people don't know the heartache and practicalities that go with rm I'm sure it will be enlightening so let us know when it airs.
Snoopy I used opk and found them fine, I got some from home bargains and found them to be the best ones. I think took the pred 2 days later.

Borderline levels (count) so yes, they are aggressive to say the least! I just don't get why the drugs don't work on me...weird!

Prob is I just don't agree with it so it doesn't sit well with me plus it's £2k a go I think. Dh are starting to discuss it though but think if we did do it may be an Ivf thing (so it's all controlled) my cycles are a mess still so hormonally something's not right anyway. I was speaking to a friend who has hashis and she really believes in ivf being the way forward...twin girls first go (unsure of nk issues as her doc didn't believe it an issue!!)

Well ill keep u posted obv with how I go. I've read the thought of it all
Being controlled...as they prepare everything so it's optimal. But they don't use it for rm issues alone so not sure if it helps rm or not.
2 grand ...that's an awful lot of money.
U will find a way to make it work for
U...it's just v frustrating for u right now!

My lining is slightly on the thin side, so I'm hoping ivf manges to thicken it up...

Thanks trying!

Tbh I the info I have is mainly from the boards I haven't actually been given a protocol with full costs etc on as I've ignored it until now! Something new to research the hell out of again

Yeah Ivf will be able to sort that out, my friend was so positive about it!!

I'm sorry Determined this is particularly difficult for you .. But sounds like you are nearly there and though I don't know enough about the challenges you have and Ivig I absolutely understand why you would want to go 'all in' with IVF too if you do go down that route. I was due to have IVF appointment earlier this month if my last SO hadn't worked and was researching everything I could to help make that a success. Embryogen for IVF has just had good results in studies for people who suffer miscarriage so you should look into that too. Trying - I mentioned a while back, but don't know if you are doing with embryogen? The website is origin.com
Free- that's great news about the film. I would love to see too so do keep us in the loop with the progress!
Hope everyone enjoying some sun this weekend x

I know wot u mean about researching! I could be a bloddy obs and gynae consultant! I decided ivf was too huge to research so have just looked into certain aspects as it as to not confuse stress and worry myself! In just going to try go with it and keep everything crossed! Glad ur friend has postive vibes on it, so does my colleague I think it sound awful but in reality it's hopefully not too bad..but they did have sucess quickly I'm sure it's a diff story when u get to round 3.4.5.6!?
I spoke to my consultant about embryogen. He's opnion was there is embro everything these days,I can have it all but he's not convincrd of the benefit of a lot of things like that, he reckons the pred intralipids metformin clexane combo should do its job for me I hope so! Trying to stay postuve and calm!

I'm sure your consultant is right Trying .. And the one who recommended Embryogen to me was also nhs and not supportive of the immune therapy we all get .. Tried to scare me with stories of abscesses from steroids etc but I was planning on doing all if I could.
I've a couple of friends who went through IVF and they both said the best tip is take the drugs and go straight to bed so you limit the effect the moods have on you and others! They were both lucky first time so if fingers crossed you are too x

Hi ladies, would anyone like a Doppler? I have the one that freelance gave me so I'm happy to post it out. Message me if anyone is interested.

Thanks rosa! Loving these ivf first time sucess stories. Although am keeping my feet to the ground, I really hope it works out obviously.
I just had a healthy lunch of salmon and brocolli. But now about to tuck into a small bowl of home made apple crumble! Yummy! Got to have treats

That's so not helpfulof he doctor trying to scare u! My rm doctor ascially said Mr s was an unsafe doctor just throwing things at us. Well my ivf consultant in a well known chain of clinic (they have about ten in the country ) does the exact same Protcol for immune probs. I just think it's a bit less accepted in the rm world, but the ivf world seems more open ( well that's the impression I have from my place). And plus we have anecdotal sucess of this thread and babies in the making :)

Trying - I did the same.. Eggs, avocado, tomato, juice. Then gf toast with rasp jam and now away to buy a biscuit boost!
Suemays.. Wouldn't want to jinx things but if love to think I could make use of a Doppler in a week and a half..

Hi ladies,
I would like to join you (well rejoined you, really as I posted occasionally ages ago...)
Don't know how to add myself to the list, could someone do it for me please?

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 (way too late I would say as it never works).

Have seen Coventry people, Dr Gorgy, Ndukwe and penny at Serum.
Also had consultation with Reprofit in Czech Republic to see if IVF would work as I could than have all the immune drugs much earlier than normally. They suggested mild IVF and have the embryos genetically tested and freeze all the good ones (if there are any left to freeze) and do FET with endo scratch the cycle before + start all the immune drugs from endo scratch. They quoted £3000 for this.....Sounds great but I might just spend £3k on another chemical. They also say that I will clearly need IVIGs which at £1700 per infusion on top of everything is really expensive....
I also saw an imunologist while there and had more tests done and she was saying the same thing about IVIGs and on her protocol it's one infusion every 3 weeks from BFP till 20 weeks of pregnancy - that is (by my calculations ) £10k worth of infusions (had to hold of tight to the chair as I nearly fell off it).
The good thing is that they do treatment pre TTC and repeat the tests so she believes that I won't need IVF.... another 3 weeks till I get my results and will see what she suggests.
Rosa I think I was in touch with you back in October, so happy to see your news...
Determined your posts resonate with me, felt like if I was reading my own thoughts and feelings (hope that makes any sense. ..). Why can't I just be treated with something nice and cheap..... Grrrr..... My thyroid antibodies are both really high, one of them over 1300 and who knows how high realy, lab doesn't test over 1300. Can I ask how high are yours? I really think that they are my biggest problem, the imunologist I saw a couple of weeks ago said they are the highest she's ever seen (well thanks a lot for that) and I think that's the reason she suggested IVIGs (have hashimotos since I was 8).
I am off to read the thread properly to see what everyone esle is doing....

Hi Swlondonnanny!

Welcome! Dont want to read and run so I've added you to our list :) Really hope things go well for you with regards to your results and next move. Will reply properly when home :)

3rd Trimester
Hopender- (38 yrs old) 7 miscarriages, one DS, Was on pred, cycolgest, baby aspirin and intralipids. Now only baby aspirin! (29 wks)

1st 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. Also on SO programme. (10wks)

SeekingMiracles (30)
3mcs (5+3, 4+2 and blighted ovum 6+4). On treatment programme for high Nk cells and PT Gene variant. Pred, intralipds, fragments and aspirin. Currently crossing fingers and toes that this pregnancy works out. (7wks)

Sunnyday (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment) also doing super ovulation - round 1 (got bpf on round 5 last time) (4wks)

TTC

Tryingno1 (30 yrs old)- 3 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6.5 weeks. High nk cells. Pred and intralipds. pa1 mutation. C4/m2 mutation. Hla dq match and low LAD. (Last ones done by ivf clinic) pred and intralipds. Along with asprin, clexane, metformin, hydroxy. discovered low sperm count. Starting first ivf injection in 1/2 weeks.

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) about to do Humira for cytokines.

Drttc- (28 yrs old) 3 MCS (6 wks, 4wks 2 days, 5.5 weeks), 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. Testing on May 28th.

lilliesandchocolate (32) 1 mc, 1dc, 5mc, 2nd dc on pred and cyclogest and the vitamins, 1mc. pred,cyclogest,intripalids and the vitamins.

Swlondonnanny 39, TTC no 1 (since dec 2010) multiple chemicals /miscarriages in week 5. TTC naturally. high uNK cell, normal blood NKcells but high activity, v. high thyroid antibodies, borderline proteins C and S deficiency , borderline high TNFa.
On pred, fragmin, intralipids from BFP (way too late I would say as it never works).

WTTC

Determined123- awaiting (retest) results. 4mcs (2 on treatment). PCOS, Borderline NK Cells and v.high thyroid antibodies.

Hi SWLondonNanny - of course I remember .. You got in touch as we've similar age, been trying about same time and have quite similar immune profiles. I'm very, very cautiously optimistic (read: absolutely %# scared!) .. But hoping it's not long before I can relax and others on this thread including you are happily and healthily pregnant. Really sorry things been extra tough and overwhelming of late for you. You're so close I'm sure though - as you know it just takes one month of luck and the right treatment mix from your consultant .. Though there are miracles stories too where those that really need it just have a baby without anything! Anyway it's great you and Determined can swap notes but message me again if any Qs you think I might be able to help with. Have you ever tried pred from ovulation? Just wondering given your losses seem to be very early. Take care and wishing you a happy summer x

Hi ladies,
Hope you're all enjoying the bank holiday weekend.
Welcome on board SwLondonnanny, sorry you're having such a difficult time. I hope you find some answers soon enough. Definitely sounds like you need treatment earlier than bfp though without history.good luck, stay positive and you will get there.

3 more days till my scan with DrS... Time goes so slowly! Feel like this is a crucial one for me. I swing from positive to negative. It's tiring!!

Hi Swnanny

It's such a difficult decision isn't it. My head is in a real tis at the mo I need to calm my brain down! Permanently have a headaches!!

Just out of interest did ndukwe, gorgy, quenby give you differing protocols or did they all say the same thing? Same drugs, same timings?

Thyroid antibodies were 780 and 77 (there are 2 tpo and ag? (Can't remember exactky) but now they are 380 and 16 (second one normal range now) I believe they have dropped due to dietary changes. Have you cut out gluten? That's the biggie with hashimotos...although my friend who had Ivf was at 900 and she said her doc wasn't concerned (and Dr s said steroids were enough for me) what's your thyroid function like? That seems to be a bigger issue.

I also believe things change daily so you never know for sure, these tests are a snapshot in time.

What's your gut telling you to do at the moment? I am so sorry you are in this pants situation, hugs xxx

Determined
I am gluten free, dairy free and low carbing. Used to do no meat, only fish and plant protein but that left me soooo anaemic I eat meat again and iron back to normal.
I take omega 3 (high dose), selenium (half of RDA as makes me constipated otherwise).
Thyroid antibodies are alway the same, never went down.... Last aTG was 205 and aTPO over 1300.... My TSH goes up an down like crazy (on 125 thyroxine currently but on 175/200 6 months ago)
Have been diagnosed when I was 8....
Think that my thyroid is a main issue with me , really.
Took pred from ovulation a few times but it messed up my ovulation for a couple of cycles afterwards. Never conceived when I took them from ovulation so no idea if that would work.
My gut instincts is to take pred, intralipids once a month and try SO. Have chlomid at home but not keen on chlomid (was prescribed by ZW but also advised to get my BMI to under 35 - I am a size of baby elephant, really. That was end January so I went with dealing with my weight and ignored chlomid - not able to lose weight and be on hormons at the same time. Went from BMI 43 to 35.5 currently since then so considering to take that chlomid next cycle).
All the clinics we've been to advised similar protocol. ZW added intralipids, but blood thinners, cyclogest and pred from BFP even my NHS RMC consultant agreed with.
It's pants that it doesn't work.....
And sadly looks like I'll have to find money for IVIGs and pray I dont have any crazy reaction to it and it will work....
What is your main issue with IVIG? Other than price? It is a very powerful stuff if used properly and works wonders....
oh and I had something called traphoblast antibodies tested 2 weeks ago and really hope I have them positive as they sound like they can cause endless chemicals which would fit in with what is happening to me - treatment for that is low dose steroids for a couple of months continuously if they are not too high. If very high it is 8 weeks of the stuff which is in IVIGs but given in injections once a week (costs around £700 so even if it is pricey it is still manageable ).
Sorry about mememe post, just trying to get my head around all of it

Oh bless you SWLondonnanny, you sound like you are doing everything in your control. I'm gluten free, dairy free, caffeine free, fun free (no just kidding the food I am making at the moment is lovely and I would give deliciously ella a run for her money - ha ha :) Miss a decent cuppa though!! I took selenium which I think helped but I was o'ding on it when I have my vits and mins tested by a nutritionist so I have had to stop for a while and have a retest.

Trying to keep the weight off/stable whilst on hormones and steroids is so hard but it sounds like you have done an amazing job since jan!

My main issue with IVIG is that I don't really agree with it from a risk perspective, I worry something could go wrong and then I get sicker (catch something, allergic reaction, another auto immune, god knows) is my first concern and then the second is that the money and if it doesn't work. This time last year I was told pre and intralipids would give me an 83% chance....and they didn't work and my NK aggression has got worse and now they don't respond well. What's to say IVIG wouldn't have the same thing happen? (At a price of around £2K and all that emotional investment). I guess I don't know enough about it really (success stories v unsuccess stories) Which clinic would you do IVIG with?

I really hope your trophoblast come back good for you! Have you ever seen an endocrinologist about your thyroid?

Don't apologise for me me post...it isn't at all, its exactly what this thread is for :)

xxx

Welcome swnanny. Sounds like u have been to see the best in the rm world, I'm sure/hope u will have the right combo and very soon have sucess to share with us. It's so confusing and a minefield isn't it...
Rosa when r ur results due?
Seeking all the best, I'm sure all is well!

I'm just waiting for AF to arrive (never wanted af so much in my life!) so I can start the first injections. It should come some time this week. Hurryyyyyy up!

Hi ladies! Hope you've all had a lovely long weekend!

Trying, what cycle day are you? Have you been regular?

Rosa, Seeking, and Sunny- hope the wait for you're upcoming scans/results go swiftly! Are any of you experiencing any symptoms? Or is pred masking them? I'm having mild heartburn/stomach right now which I never have :(

Can't really count my cycle day as I've take the progesteron pill to time my Period to arrive roughly this week. I'm actually not sure why I needed this pill as my periods r regular, but its what they do for all women! So I stopped them on Sunday and af meant To come within 4/5 days, it's day 2 today! I'm just being impatient!!
Ur due to test soon aren't u? Good luck!