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

Me too Trying - hope this can be a 100% positive thread ... I'm sure everyone's time will come. Let me know what comedy you watch - I also like that. Sometime serene music etc makes me to melancholy.
Sunny - I've to get my 3rd soon though actually it's 4th as had one months back..and get someone different every time. They always chat away though and I just have a furry hot water bottle ready for my arm, cups of tea and the remote. The time goes fairly quick I thought.
Can't believe will reduce to 10 on pred tomorrow and a week tomorrow will be my last day on it.. Def put on weight though .. About a stone! X

It's all so common isn't it. I think if I opened up to people many more around me prob have had similar issues. But we only hear of the ones who blink get preg, and live happily ever after.
I'm feeling postive at the moment, I've started watching snippets of comedy stand up every night for ten minutes to make me laugh! I really recommend it at uplifting ur mood! I've found a comedian I generally find quite funny. (Does this sound like I'm insane?! )

Great news rosa! I think the fact mr Shehata was so sure u would be ok last time with dropping ur steriods etc was a sign he thought u were right on track.
All the positivd news is making me excited and I really Hope I can join the world of bfp soon. I had insomnia last night which I usually get pre af so hopefully it should come tmrw.

Sunny yes let me know wot u did for 2 hours I have mine next Friday as u have it pre egg collection in ivf. Am I have no idea what u do! Have a chat?!

*so many

Well if there is any truth in too many scans make your baby left handed mine will def be left handed! Had my 9th today (one private, one with Mr S all the rest with hospital). They thought 11+2 and HB. Phew... If I can just get to next thurs with good news on Harmony test and booking scan I might start to breath properly.
So great do many now on the right path... I'm actually having to remind myself who! There was nobody for a while on this thread .. Then only Hope for so long. It's really encouraging for everyone to see that it can happen .. Even with very tricky history and profile and when you feel maybe it can't. I hope I can stay this positive .. And everyone else feels it too x

Thanks, Rosa! Good luck on your scan & can't wait to hear to good news :) it's crazy how in my mind your pregnancy is flying by!

Cheers, Trying! Yes, it is really all happening now after a gloomy dry spell! I'm not liking how long they can take to get back to you... It's all urgent to me!

Thank you, Seeking! We've said it a million times but god it is SO hard to ignore our past experiences... Even now I'll check for spotting, when AF isn't even due until saturday! Going to try my best to be positive though :)

Wow that's brilliant news Drttc!!! Congratulations! You are not alone with the fear!! Don't worry! We'll be here to hold your hand as you have been for me. My mcs were always around 5/6 weeks so those first weeks were hideous, slowly it's getting better but it's still bloody terrifying! Fingers and toes crossed for you!!
Rosa are you hang NHS scans as well as with Drs? I wish I'd arranged another for next week rather than wait the two weeks to see Drs again!! Can't wait for tomorrow to be here.

Congrats drttc ! Gosh this thread has really picked up. Hope u get the intralipids etc sorted. Yay!
Rosa good luck xxx

Oh how amazing Drttc! I really hope this is it for you :) it is weird getting a + at 10 dpo isn't it.. Mine was there on the digital 1-2 weeks- but faint on my GP's test. It's hard to get your head around but everyone thing and everyone starts at some point!:) I also know what you mean about the levels of fear. I'm burnt out from fear.. Not felt preg the last couple of days and so so worried about MMC. I've a scan later this morning ... Last one before the 12 week next Thurs... X

Well it's only 10dpo but...

I got my BFP!!!

No idea how to feel, except as though I'm a step closer. The beginnings of the faintest BFP started at 8dpo... I'm already questioning what it means! Never had a BFP this early. Which means I'm only CD23... 3 weeks pregnant?! Maybe I ovulated very early! Praying this is the healthy pregnancy we've longed for. Have contacted Dr S but Louise is gone so trying to sort things with Cheryl. Waiting on her to get back to me about Intralipids. My MC tend to happens so early that I'm going to be shitting bricks for at least 3 weeks. Then I can move on to just being terrified...

Hope you all have a lovely day lol!

Rosa can't bel ur nearly out of trimester one! It's so true, ur life can change within a month. To think where u were a few months ago. The fear of a mmc will always linger I'm sure but hopefully u will feel like this is real after the results next week. I still have everything crossed for u!

Yeah drtcc that's the same thing! I was told 2-5 days...Hopefully it will come on Thursday ow have acupunture booked to try help it along! Good luck with ur test

Hi Drttc - sorry you're getting these symptoms, think I only had that a couple of times. I'm weaning off pred so down at 15 at mo and have less symptoms (almost nothing) than when was in higher dose..which seems odd.. Getting worried about MMC again. But compared with other pregnancies I would say nausea less with pred but fatigue as bad or worse (prob because of insomnia and cyclogest).
Trying .. I won't get Harmony tests until Wed/thurs next week... And 12 week booking scan next Thurs too. The final countdown to the first big milestone is taking ages as predicted! Hope your AF shows up do you can get your new show on the road .. So to speak! X

Trying, I've used progesterone to delay AF and it usually comes in 2 days! Not sure if they've given you something slightly different.

Seeking, I read somewhere that woman who aren't experiencing symptoms while on pred should enjoy it... Lol! Maybe try to apply that perspective? Hard I know! 8 weeks is exciting though :)

Hope af arrives soon Trying... how exciting that your about to embark on your new journey. Really wishing everything goes well for you!!

drttc - i've literally had no symptoms, only my boobs hurting before i started taking pred. It's masked everything.

Swnanny, Determined, it sounds like you're both doing everything within your power to get to where you want to. I'm sure it's all just a matter of time before something clicks and works for you both.

I've had yet more down cm. It's driving me insane. It goes for a few days and then comes back. With my 8 week scan looming it's making me very anxious. I just hope little bean is comfy and doing well in there.

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!

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 :(

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!

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

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

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

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 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 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.