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Conception

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Immune/NK issues - aka Pred Thread no. 23!

996 replies

Chickjen · 11/09/2019 22:33

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

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Wewin · 08/10/2019 10:05

@zoe16 you would think he would give you the whole bag. Seems a waste. That answer he gave you didn’t explain why he only gives 1/4 of a bag. Maybe ask him next time, could you have the whole bag please. Seems such a waste.

Those flashing smilies! I hear so much about them, at first people are like “yeah I got a flashing smiley!” and start DTD. Then by 8 days later “oh not another blinking flashy smiley”!!

Me and my DH did all that SMEP for months and I was so fed up of BD’ing! I’m glad this month, we only did it when I felt like it. Which was only twice around ovulation. Guessing though as no charting or OPK’s this month. But now it’s a guess but that’s fine. It’s nice to be in the dark a bit wondering.

Wewin · 08/10/2019 10:10

My goodness I really sound like I’m a smug git with not SMEP! I’m sorry, I didn’t mean it like that at all. I was just so fed up with it for me in the end. Please ignore me. I’m obviously losing the plot today. I absolutely can’t stand when other people criticise something that I do. I honestly am not criticising SMEP in general, just my personal experience of it after 6 months of it. Sorry if I came across a bit self-righteous, I really didn’t mean to.

zoe16 · 08/10/2019 13:23

@Wewin yup no proper explanation despite me telling him that i've seen and read that people receive the whole bag. I even asked for the whole bag and he said "oh no I can't give you this whole bag" so then I asked if that amount was specific for my weight and he said no that is the amount he gives to all his patients and usually he has at least three patients in at the same time doing intralipids so he uses one bag for all three. However, next time I get a bfp i'm def doing intralipids at another clinic instead of his office so I can get the whole bag ;)

On another note...I despise the flashy smilies, I rather use the strips. They have proven more accurate for me. I personally prefer SMEP but could see myself feeling like you do after a few months!

EmsIMO · 08/10/2019 13:56

Thanks @Chickjen I'll check that out (aren't all ideas linked to fertility issues expensive?!) Hope you're doing OK X

Just on the topic of being 40+ - I watched an interesting video interview by BBC Sport with Tracy Neville, the England Netball Coach, who has had two miscarriage (I think) and is currently pregnant at 42. She talked about how every doctor she saw almost set her up for failure as an 'older mother' and how she never prepares her team for failure, only success ... She said this conversation needs to change. I thought this was so true. Everyone I have seen has essentially noted my age and said, 'oh it's nothing to worry about but ... ' !!

WeeGi · 08/10/2019 19:08

@EmsIMO my IVF clinic makes me feel like I'm a yoghurt in the fridge with a sell by date; "don't delay your next round of IVF too long as you'll be 40 soon and once that happens you're chances of IVF success will drop". No pressure then..... Its as if I'll be okay until the day before my birthday...! Which is nonsense of course! X

EmsIMO · 09/10/2019 10:29

@WeeGi That made me laugh, what a comparison!! Completely agree and with our IVF clinic (who we no longer use) when I went in to confirm my chemical pregnancy and was in pieces crying, the nurse said to me in a kind voice, 'Go and have some time out, have a break but .... don't leave it too long because you do turn 40 soon don't you' .....LOL!!

For those on here who have done IVF - As we are potentially heading towards trying that one final time early next year (ideally the Letrozole works but so far nada) Did you do a 3 month prep leading up to it i.e. no booze, caffeine etc? We pretty much eat well etc already (although I am yet to give up my daily coffee) but I feel that if this is our last shot then I should throw everything at it ... Tomato paste, Pom juice, COQ10 etc! Any tips welcome!

ginandtonicformeplease · 09/10/2019 11:12

@EmsIMO I don't drink a lot anyway, but do drink far too much coffee - in the run up changed to decaf, added pomegranate juice and some other bits and pieces advised by the fertility nutritionist. I did try beetroot juice but I'm afraid I spat it out as I found it so disgusting. DH really likes it though! High protein low carb is one of the main things we were told for both egg and sperm quality.

I had a call yesterday with my clinic - they had the results from my latest tests after the humira - no change in the NK cells. The only other drug they've got - clioquinol (sp?) - is contraindicated for women with epilepsy so that's out for me. He's suggested that we just go for another transfer and hope for the best.

I seem to have been passed to the most senior doctor at the clinic - I'm not sure whether it's because I'm a difficult patient or difficult case but I much prefer him to the last one!

EmsIMO · 09/10/2019 13:19

Thanks @ginandtonicformeplease My daily 1x coffee is the one thing I struggled to give up! I guess it's my FU to infertility as I've given up so much other stuff!! I've got a decent machine at home so maybe I'll switch to a nice de-caf one soon (sob sob) I really don't drink that much anymore although a weekend away with my husband put paid to that ... but I guess we've got to allow ourselves some normal, right?! Thanks for the info and I agree re Beetroot juice, it tastes a bit like it's just come out of the ground!

Are you happy to go for another transfer? Good luck with the new Dr, I'd see it as a positive change X

Chickjen · 09/10/2019 14:18

@ginandtonicformeplease isn't the pred the most important part in the fight against NK? Could you start taking it a few weeks before the transfer?

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KittyKatSmile · 09/10/2019 15:52

@ginandtonicformeplease that sounds positive, especially if he's a more pleasant character than the last one. Fingers crossed.

@EmsIMO I did all of the below, definitely do the high protein thing (I think I wrote out the amounts etc earlier) and also took ubiquinol and inositol which I think is a better form of folic acid (folate so naturally occurring). I did the same as you really, thought it was worth throwing everything at it and beyond all expectations, it worked the first time. Good luck to you x

zoe16 · 09/10/2019 17:52

I have a tmi question....my DH and I have not bd for a few months (given our mc history we just like to play it safe during pg plus we're wayyyy too tense to even do anything) and we're gearing up to try again at the end of Oct but we want fresh healthy semen. How many times should he ejaculate to clear out the old backed up junk from now until then?

HoldingOn2Hope · 09/10/2019 20:38

Hi Ladies,

I'm new to this thread. I've made an appt with Dr Shehata, just wanted to know what everyone experiences have been so far and what to expect?
I was meant to see him bevy week but delayed it thinking this month may be my month - sadly not as I can feel AF approaching. Next available appt is mid Nov.
My history is 3 consecutive mc's in the last 14 months all ended btw 7-9 weeks. Been ttc again since july and no bfp. We had a break from it for a few months as last mc was May.
Xx

WeeGi · 09/10/2019 21:32

@EmsIMO @ginandtonicformeplease I use organic decaf coffee. My clinic told me the process of decaffeination is a chemical process thats really bad for you, so if it's been decaffinated by organic methods it gets round that. You can get it in health food shops. Not sure if it'll be a good substitute if you're a coffee connoisseur though!

@EmsIMO yes before IVF we step up the healthy living for three months, although pretty much try to live like that most of the time to improve our chances of falling naturally. No alcohol, caffeine, processed food, lots of raw nuts, limit our sugar intake, no takeaways. We also stay away from chemicals such as household cleaners (I clean with vinegar which is a natural antibacterial), natural toiletries, no nail varnish or perfume etc. I also try to stay away from plastics. I reckon its probably overkill (and it hasn't exactly helped us achieve our goal yet), but I do want to be able to look back and say we did everything we could. I could murder a jack daniels and coke though! X

Eeviee · 10/10/2019 16:38

Hi Ladies, for those of you who's OHs have done the DNA frag test, how bad was the damage? My OH has come back at 27% so just outside parameters, am freaking out, I was really hoping it was just me with issues 😥

Eeviee · 10/10/2019 18:00

@EmsIMO I've been avoiding coffee mostly since we started trying, but sometimes I have decaf. Grumpy Mule coffee do a good organic one which is swiss water process so doesn't have any of the nasty chemicals usually used in decaf. xx

Chickjen · 10/10/2019 19:30

@zoe16 I think the swimmers take 24/48 hours to recharge after ejaculation and as you want a good supply coming through later, I would suggest every other day for a week or so in preparation. Don't rush to get them all out too soon. But that is completely unscientificly based!

@HoldingOn2Hope the first appt he will go through your history and recommend blood tests which they can take blood for that day, also there is a test for your partner which if you choose to do he will have had to abstained for 2-5 days. The blood tests do all add up though so take any previous ones you have had in case they can be used.

@Eeviee is it the overall damage that's 27%? Or one of the high/low results? My DH's was 40% overall. Although the high and low results were both somehow quite low. Lots of medium damage perhaps?!!

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Eeviee · 10/10/2019 20:40

@Chickjen 27% overall: high damage was only 5% so within range, low damage 69%. I’ve sent the results through to DrS so hoping he will let us know. Just trying to work out if we should hold off trying this month now... did your OH need treatment? How are you keeping? Hope you’re doing ok? X

zoe16 · 10/10/2019 21:15

Thanks @Chickjen. Did your dh do anything to reduce his dna frag? If so how long were you able to start trying? My dh has not been tested for this as yet but since February he's been on ubiquinol, vitamin c & e, fish oil and multivitamins with lots of folate, selennium and zinc.

I'm concerned this may be an issue for us as well but my doc refused to test my dh. He says his SA was very good and there is no indicator dna frag is our issue since we get pg easily. However, since reading that high dna frag can get a woman pg but cause rmc i'm now regretting not having it done and can't have it done for another few months.

Wewin · 11/10/2019 04:23

@zoe16 I would say a couple of times to be sure but at least once. Although this month we BD with the last time my husband did was when we BD one month prior. But I’ve found it didn’t make any difference with us using ‘fresh’ or one month old swimmers. So we didn’t use ‘fresh’ this cycle.

I’m 13dpo and have been pretty much symptom free this cycle up to now but have woken up feeling really ill with sore boobs. Bfn yesterday though but if sore boobs persist the tomorrow I’ll get a FRER. AF due Sunday. Ran out of protein shake so ordered more. I was really glad to be taking it as read arginine helps build womb lining and it has arginine in it.

EmsIMO · 11/10/2019 10:51

Thanks for the coffee rec @Eeviee X

Re DNA Frag, my husband had quite a bad result back in the summer, having previously had 'amazing' results with the standard NHS/IVF clinic ones. He is now taking the recommended Impryl, we eat pretty well 85/90% of the time anyway, he's reduced his alcohol intake (drinks a lot of AF beers at home when the needs arises) and he is trying to reduce stress as much as poss via meditation. Also, Mr Gordon (who we saw recently) recommended frequent, erm, ejaculation, to keep everything moving, every 48 hours (!!!!!!!!!!!) All of this combined should help a great deal X

PGJV · 11/10/2019 11:33

hello everyone and thank you @EmsIMO for replying to my question regarding when to start pred. I did start taking pred on day 13 of my cycle. I am now on day 26 of my cycle and have been getting a bfn since day 23 - so that means i am not pregnant and waiting for AF. I am getting pretty stressed out regarding trying again next month as not sure why I couldn't conceive this month as we've never had problems conceiving before. Can anyone recommend an vulation tracker that I should use? I've used the clear blue one before but would like to know if there's a better and more recommended one. I am not even sure though if I want to use one as I've never had to use one before - just so confused as in what to do. I know I am stressing out unnecessarily and should just take it as it comes but I am finding really hard to to do that.. Thanks everyone for your help..

Chickjen · 11/10/2019 13:30

Hi @Eeviee @zoe16 he did start impryl but from when he started taking it, to when I ovulated, would only have been a week or so (and then I got this bfp) the main issue it flagged up was he was taking hot baths (we do not have a shower at the moment 😥) so he switched to tepid and we DTD every other day to keep a fresh supply coming through. Either it helped very quickly or we got lucky and got one of the healthy ones this time 🤞@Eeviee 27% damage does also mean 73% healthy and I would take those odds! It certainly wouldn't (and didn't!) make me wait 😀
I am ok thanks ❤️ counting the days till the next scan! I am still so anxious but my belly does seem to be growing so something is happening in there (I hope 🤞)

@PGJV I only tracked O by temp so I knew when to start the pred. We DTD every other day from the end of AF and until like a week past O (thankfully I have short cycles!) I found trying to time round O didn't work for us, certainly if we tried a few days in a row it didn't work, like the swimmers didn't have time to recharge 😕

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PGJV · 11/10/2019 13:54

Thanks @Chickjen.. That's pretty much what we did too! But may be i just need to relax more. I'll try the temperature method too for tracking ovulation and see how it goes. Fingers crossed!

Congratulations to you and good luck for your next scan!

zoe16 · 11/10/2019 17:02

@wewin we have started to clear out and will continue in preparation for O in next two weeks so hopefully that works. Sore breast is a good sign! GL

@Chickjen thanks so much for that info, it has made me feel so much better!

zoe16 · 11/10/2019 17:06

I was wondering if he should go on a course of doxycycline. I read a study that found that 200mg twice daily for about 3wks can help with reducing damage. Did anyone's DH take doxy for this reason?