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

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....

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..

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 :)

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

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.

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

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 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

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!!

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

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!

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!!)

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.

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

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?

And yes, please keep us updated on the film!

Yes, freelance, we have! Well, it doesn't have information on previous members... But it's a list with currently active ones! At the moment it looks like this (some people may be about to move up a week)....

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.

WTTC

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

Did you revive the lists drttc? Yes we always found them really helpful as you could see loads of people progressing and having babies.

I've forgotten exactly what was what in terms of my results determined. I could always ask Louise! I know they were in the top 5% of levels that they see in the clinic - back then anyway (summer 2011). I didn't get retested as I was already on the higher dose protocol. Are you also on hydroxychloroquine? Ivig was never mentioned. I had one miscarriage on the treatment just before my first child but we guessed it to be chromosomal as it never progressed to a heart beat (unfortunately it wasn't tested after that ERPC) and then a second miscarriage on the treatment after my first child and before my second which did turn out to be chromosomal and was tested (trisomy 22 they said).

Hey I should say that the documentary I was filming about my experience with it has hopefully been commissioned! Only by a small channel but they have some good ideas for it. I will keep you all posted.

Freelance you're a legend! Before I joined this thread I went through a good bit of the previous ones, and your story (along with your thread mates) was so inspiring. I admit it was my ray of hope when I felt like my dreams of a family were over. Those old threads are why I've revived the progress list- it such a great visual for newcomers and current members to see success (and the story behind it).

Snoopy, welcome! Sorry you've had to go through so much to get here :( It's absolute crap. But youve come to perfect place for positive vibes, reassurance, and quite a bit of knowledge.

I'm always following along ladies, cheering in the background :) Really chuffed to see Rosa, Seeking, and Sunny are right on track.

Rosa, have you said what gender you suspect?

Seeking, glad to hear spotting stopped. Is your next scan with Dr S or NHS? Will you be 8 wks then?

Sunny, 2 and a half week wait... Ah! I've told myself that when I catch I'll get a 6 wk scan (private or NHS). Too impatient!

Trying, I agree with Rosa about ivf... I have a good feeling about it for you :)

The brown seems to be trailing off again.... One day at a time... Thanks ladies
Sunny - I had very little symptoms, only thing of any difference was that my boobs felt very slightly sore. I've nothing at all since starting pred. Wishing you all the best, chill out and take it easy. Easier said than done, I know.

Sorry just realised I missed a whole bunch of post! Can't keep up!!

Hey free nice to hear from you? Quick q was it your number of nk cells or cytoxicity that were high? I've had my 4th mc in jan and retests show pred and intralupds not working well on me...did you ever get put forward for ivig? I've been asked to retest again after 2 weeks of steroids but declined for now...just don't know what my next step is!

Happy bank hols everyone xx

Morning ladies

Sorry I can't keep up with all the comments...so busy with everything at mo!!

Snoopy am so sorry where you are at right now but it's possible...you have to keep on fighting and persevere and Dr s will help you succeed! I know it feels like you world is crashing down but you will get through it and ready to try again. Push the nhs, I never got karytype tests done but I use accepted it so push hard!! (I ended up paying) don't hold regrets about trying sooner, or anything else...regrets eat you up inside and hold you back on this journey (I have harboured many) there has been so much success from many women at rock bottom I hope that gives you inspiration. Finally work is just that, focus on you as it will empower you and make you stronger and heal you! It's so hard not to feel guilty about work when you are career focus but now is the time for you to look after yourself!!

Seeking how are you today?
Trying persevere with met...it takes a while but I got there and now don't know a thing!
Hula sorry about increase-why is this so damn unpredictable!! Hope your ok?
Rosa hope your ok today and enjoying this bank hold xx