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Immune/natural killer cell treatment when TTC or pregnant (aka the 14th pred thread)

993 replies

sunnyday01 · 29/11/2014 13:57

Continuing from 13th thread

OP posts:
Determined123 · 23/01/2015 22:26

That's fab about your pcos friend trying, just out of interest do they know why she kept miscarring with pcos? Or what treatment?
(As I have that on top of NK, thyroid and MTHFR to name but a few ;) ) x

Tryingno1 · 23/01/2015 22:25

Ps dildoos that's really cute wot u told ur daughter. It must break ur heart a bit when she asks :(
She sounds like a little cutie!

Determined123 · 23/01/2015 22:23

Dildoos your little lady sounds such a cutie, didnt think how this rmc lark impacts so many others, never thought much farther than me and DH but it effects children/siblings, grandparents, aunties etc. wish I had the cure!!

Also great news about the valuation! Very positive!

I am feeling a bit better today. The physical inconvenience (iykwim) is getting better, hormones dropping and energy levels increasing and I am actually excited about NOT TTC for a couple months (could still be sugar and booze causing this though ;))

Trying you are being v.tough and all those feelings are so normal and it is possible! We've seen so many happy stories on this board! you are sounding in a better place at the mo. :)

Dildoos just to add I think NK cells fluctuate throughout our cycles but are more on the increase at the end (think they raise before our period but don't quote me on it). But also think after regular pred use does lower immune a bit...I can ask Dr S when I see him next week!

Hope you have lovely wknds planned xx

Tryingno1 · 23/01/2015 22:21

I've thought same! I don't think anyone knows. It def lowers them-I've read a study where the taken the uterine nk cells and 2 weeks post pred the nk cells were much much lower. I think they would probably slowly rise over a few
Months - that's just my best guess! But I don't know!

I do know someone who had pcos so couldn't get preg for ages and whenever she did miscarry. Eventually she didn't get preg so ended up had ivf. Miscarriaed, then had a little baby boy ;). Yay!

dildoos · 23/01/2015 21:46

That's a good place to be mentally. Yes IVF and miscarriage would be a difficult place to be.
I often wonder if the pred gradually lowers the nk cells month after month or in my case stops them over reacting until they are normal and then we will fall? Or after not taking them for 2 weeks they go back to our normal?

Tryingno1 · 23/01/2015 21:29

I'm ok actually. I've accepted this is going to be a long slog. The desperation to get preg every month has left. It will happen one day and I don't know when and I can't do anything else.
I will cry, I will feel sad, I will feel my heart sink along the way. But right now I'm not giving up anytime soon so I have to keep going and wait. The hours I've spent on the old threads show it does happen...some way or another. I've feel more accepting of the fact it's going to take time for me....who knows ill have ivf and then miscarry repeatedly (my current fear, recurrent miscarriage and ivf together must be so hard) but it has to work out eventually? One day?!!!

dildoos · 23/01/2015 21:24

Thank you ladies, yes it's just so tough, I try shield her from it but at same time with so many hospital stays, visits, Dr Shehata appointments and her asking why can't I have a brother or sister like everyone else, we had to say that it may not be possible but mummy and daddy are trying to make it possible. I am lucky as she is a good girl full of spirit ,but sympathetic and kind to others.

As for house feels tarnished as you say trying our miscarriage happened 1 week after we moved and I blamed all the heavy lifting etc.

Valued today higher than I realised it would and apparently they have a list of names waiting for our style property so maybe that's fate?

Determind yes it would be a perfect distraction from TTC.

On an up note when I am at acupuncture it's the one time I close my eyes for 20 mins and think of nothing!

How are you feeling determind? Trying? Rosa? Hi everyone else hope your all ok xx

Tryingno1 · 23/01/2015 20:50

Determined are u still on holiday? How u feeling?

Rosa that's pants noone nearby will do it-maybe Louise can suggest someone as they must have had some patients in Edinburgh

Dildoos hope ur feeling ok? Big move re ur house. I kinda felt the same about mine. Have u put it up? does ur little one understand theres sometning going on? it must be hard to sheild it from
A 7 year old. We started trying when we got this house. In fact miscarriage one was the day before we exchanged and the day before my bday. And at times I've kinda hated the house! but then actually I love it so will stay put. But if a family doesn't happen will def sell up. But I'm sure it will happen....just god knows in how long!

Determined123 · 23/01/2015 19:58

Hi Rosa, yes think that was the case (as I had more of a chemical or v.v early mc with that one).

Probably yes, just depends on how the next couple of months go but I think it's a good option xx

Rosa27 · 23/01/2015 14:54

Thanks Determined. I'm on complex programme too- just worried won't be able to juggle it all but glad it worked... Of course you had maybe an unlucky egg. Will you continue with it when you feel ready do you think? X

Determined123 · 23/01/2015 14:24

Sorry rosa yes that was my rubbish abbreviation! SO, for me is amazing due to getting visibility on what's going on down there, (follicle sizes, quantities, lining thickness etc and then of course when to DTD) and when to take pred/prog etc. it also made me ov on CD 14 which is unheard of (usually CD 20/21) The only thing I didn't really like was the headaches, I got a few which eased after I stopped taking it! (Only 5 days) oh and sometimes it felt all a bit mechanical but doesn't it always now for us and the meds?? I got preg 2nd cycle (cycle 1 I thing I was triggered too early!) hope that helps?
X

Rosa27 · 23/01/2015 10:07

Sorry I'm out of sync too with comments - didn't see last few!

Rosa27 · 23/01/2015 10:03

Agree Determined- 10 or whatever I can break from the tablet might be an idea! Is ILS intralipid infusions?

Has anyone had SO and found if helpful? I can't find anywhere in Edinburgh to do the scans and so would need to travel to Glasgow or London.

Determined123 · 23/01/2015 07:44

Think my posts are out of sync ;)

Thank ladies! Am on the hunt for one now ;) know what you mean. I thought the meds were the answer. Didn't realise how much trial and error and balancing act is is with doses (esp SO). Didn't think I'd have to trial and error with more miscarriages :(

Am very similar in my outlook Dildoos. We have decided to stay on our house for a while longer but I know what you mean about distractions and a fresh start. Having something else to focus on or a goal other than ttc adds a bit more excitement to the mix as life is about other things!! They say a change is as good as a rest!

Just want to also say you are a great mummy and don't forget that. 7 losses is tough tough tough but you are doing this to bring extra joy and happiness into not only yours but the 3 of your lives!! Stay strong :) ?xxx

Determined123 · 23/01/2015 07:06

Intralipids

dildoos · 22/01/2015 23:28

Trying I am ok, just find it all so upsetting for us all, it's the one place you want to see/hear others doing fab in their pregnancies then when they have upset you feel it so much with them. We always talk with our patients saying medicine is not an exact science but with us I just want it to work for us all immediately!
I don't know it's a roller coaster with extra twists in our cases!
I have decided out of blue to have our house valued as feel I need a distraction and to move out of the home that's brought 7 cases of sadness in it. Unsure if doing right hing but unsure of it all at the moment and I am so so so so lucky I have my daughter and started to think what's all this doing to her? Also had to attend child protection course today and it made me cross, how can anyone do this to a child? Or anyone in that matter? How are they deserving of parent hood when some of the bravest ladies I know ( that's you guys) are not blessed? Yet!
Sorry not doing well to Cheer you ladies up!

Eat choc drink wine!

Xx

dildoos · 22/01/2015 22:58

Yes determind do as trying says! Find a spa!!!
A nice facial, maybe foot massage?
Take it easy on yourself!
Xx

Tryingno1 · 22/01/2015 22:54

It's a minefield but don't worry, u will find the right recpie for u.

Enjoy the rest of the holidays. Try find a spa!

Tryingno1 · 22/01/2015 22:53

Intralipds?!! God it's so confusing to know wot worked!

I think sometimes SO kick starts some womens cycles and some do get preg when they go off it.(weird but I've read a lot of women that happen for) I hope that happens for sunny!

Tryingno1 · 22/01/2015 22:52

What's ils?

Determined123 · 22/01/2015 22:27

Because we were on a break after the last m/c. I didn't think I physically could get preg without it (only got preg on it or with herbal supplements to balance my pcos hormones because I ovulate late and have a short LP).

Only thing to bear in mind is that I had ILS only 6 weeks before I was preg again so maybe that helped? God only knows!!

Tryingno1 · 22/01/2015 22:09

U stopped SO

Tryingno1 · 22/01/2015 22:09

After each miscarriage I spend 2
Months holidaying eating and drinking. I think it's therapeutic. We are hard on ourselves with dont do this and do that.i don't think any of it matters, it just gives us a seance of control. So yes concentrate on u....

That's interesting so u have got preg on it, and then off it? I can't rem why I stopped SO?

Determined123 · 22/01/2015 22:02

I was adamant the pred was not helping/harming but since I have got pregnant on it and also not on it (took from bfp) I am now even more confused. The first one on it I think the egg wasn't great (SO and 2 large follies and one very very large).

I must admit I am looking forward to some 'me' time...I know that sounds silly it has all been about me so far but it's been about my body and a baby...I just want to be a bit more carefree and not think about meds, scans, injections etc. it's no consolation but I am happy to not be on pred, cyclogest and the aspirin at the mo.

Yes I have. I enquired about Dr Ndukwe a couple weeks ago. I am going to see what Dr S says about 2 losses on the complex programme and what further tests I can have. I know he doesn't seem to do all of them (infections?? dq alphas?? etc) but if it doesn't progress I may go elsewhere (nothing against him, really like him but need the full picture I don't see the point carrying on, leaving no stone unturned!). Oh and I think after 4 losses I prob need a hycosy or whatever they are called?!

Tryingno1 · 22/01/2015 21:38

Yeah I've had a long chat with DH about the pred tonight. I've done 3 months on it and 3 off. I'm trying one last time as per mr s and then not again.

mr s says to take a break at 6 months. So I think that would be wise. Ur body def will need a break from it, it's hard stuff! And yes I think taking half or taking it for less days is very sensible. As I've said before mr s is one of the only consultants to say to take it from ovulation. All others say from bfp.....but obviously this doesn't make sense as the nk may stop us getting preg?! It's all sooo confusing. I've done my research and its all very early stages and noone really knows. So mr s has his protocol based on his best guess and his exp. but prof quenby in Coventry does pred from bfp based on her experience. But there's no study to show us what to do! It's all very experimental and we are gineau pigs! Therefore we all go round and round in circles. Would be easier if someone said it DEF helps.

Determined I know wot u mean exactly. I have learnt to pretend im ok so well. And I can go from
Crying in the loo to laughing and joking very quickly. It's really awful to have discovered I can do that!!!
After my second miscarriage I was broken and DH was keeping an eye on me And I was worried I was getting depressed too, but after a few weeks I came out of the fog. The sadness didnt go, but i got back to normal life after a few weeks (although i only took 3 days off work which was the most stupid thing i ever did). What im saying is, give urself time and don't be hard on yourself. Let urself grieve, don't push urself to do anything u don't want, look after urself and u will come out of it and be ready again. I've learnt this the hard way from work sadly. So now I put me first.

We are all very strong ladies.

Ps determined have u looked into nduke or gorgy? They do immune stuff too...
X

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