Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

I always found it so encouraging too. Everyone on here has always been so supportive of each other, it really is lovely

Wow drttc can't believe you are so close! Sounds like you are doing fine, 50th percentile sounds great to me, toby was always off the top of the scale and us still on the 90th percentile - he's a right little chunk! Can't believe he's nearly 6 months okd now!!

Enjoy your last few weeks, it's true - you really don't get anytime to yourself! Enjoy having your haircut, watching a film even having a shower in peace - mine regularly includes a few verses of wheels on the bus now - nit that I'm complaining!!

You do need to buy so much, my advice would be try not to go overboard as you might hit need it all, for example we went with avent bottles - no real reason but a friend recommended them, we dudnt realky get in with them and 10 weejs in we had to rebuy everything as we changed to tommee tippee. Interestingly I've found most people the tommee tippee not sure why! Can't advise on breast feeding stuff as i didn't do it. If you do formula feed I highly recommend the prep machine - esp if you can get it on offer - probably the best thing I have got!

Hi everyone.

drttc just to echo what sunny said, Edie has settled onto the 50th centile. She was 10lbs 1oz on Wednesday at the health visitor appointment. She's seven weeks on Monday! We have her christening in August, on our wedding anniversary.

sunny Time is really flying, it seems like yesterday your little Toby was born

Oh and my DH was the reverse, bought everything including the prep machine even though I'm breastfeeding. I do express as well so DH can give her a bottle before bed and I find it handy to take out a little bottle of expressed milk if we go out rather than breastfeeding because she is quite colicky and refluxy

Quick question ladies :)

When you first started taking prednisolone after a bfp, did you get any side effects? I've been absolutely fine each cycle for 10 days but now I'm on day 19 or thereabouts, I'm getting a strange feeling of anxiety every now and then. Hard to describe but my mind isn't anxious but my body is!

It feels like when I first started my medication for hypothyroidism, feeling of racing heart/being on edge. That calmed down after a week or so. I'm hoping it might be similar with the pred??

X

Wow snoopy can't believe your little girl is 7 weeks, it really does fly by - I must set up that group form post rmc baby chat!

Toby was a bit reflux you and colicky too in the early days, we took him to an oesteopath which really helped. He has pretty much grown out of it now though

karryk I noticed insomnia, spots and that food tasted like cardboard but I couldn't get enough of it. I was also anxious but I'm not sure if that was because I was petrified of mc. I lived in complete denial and didn't even tell anyone until after 24 weeks.

Thanks for the tip sunny, I will start googling.

Thanks Snoopy. It must just be the pred in that case - I've got spots too! Thankfully no insomnia :) hope you and the little one are well x

Karryk- I had similar experience to Snoopy. No insomnia, but the worst acne I've ever had that lasted well into second trimester! Also gained over half a stone in the 1st tri as all I could stomach were carbs and more carbs!

Can't believe Edie is 7 weeks Snoopy!! Hope the colic and reflux sort themselves out soon.

Karry - I had an insatiable hunger and rather disturbingly I got quite hair (chin and upper lip!) that could have been the progesterone too I guess. Anyway both of those have gone now I'm off both those drugs. Hopefully the anxious feeling will settle soon enough.

Sunny - def interested in a baby after rmc board when this little one gets here.

Hi ladies,
I hope everyone is well!
I'd love advice and opinions on Dr S please! I've suffered 3rd miscarriage! I'm seeing him on Wednesday What am I to expect and how much £££££ will it be?
Thank you in advance

Hi Trying2- I think I recognise your nickname!? Have you been to this thread before?
For private Shehata tests and first consultation, we paid around £1850 from memory- yes, ouch! It can be up to £2500 if you get the full spectrum of tests done. Luckily we had all the blood clotting and hysteroscopy as well as ovarian reserve/FSH done at St Mary's and UCLH.

Then it's another £180 for the follow up consultation to discuss results and proposed treatment plan. Once he prescribes the meds (usually pred and maybe progesterone) which is also about £50+ then he will ask to see you again in 2 months time to check how you're responding to the pred. I am not sure how much that consultation is, I think it's more as it may involve a scan too.

Basically once you're down this route, it rapidly mounts up- unless you can get some of the meds prescribed by your GP or local EPU/RMC if you already have a BFP xx

Sorry for your losses tryingno2 ** following from Bubaki - Follow up and scan is normally £210. He'll want to see you every 2 weeks from BFP, to monitor the pregnancy. We probably spent around 5k in all.
Bubaki I think you're think of tryingno1 who was on this thread a little while ago (hey lovely if you're reading this )

Hello
Has anyone had normal nk cells blood tests but high uterine nk cells? Just wondering as going for my tests to dr Shehata on Saturday. Thanks

Hello CarryOn :)

I'm not quite sure without checking my results letter, but I think I was told that I had normal nk cells - they only go into hyperdrive when pregnant. Not sure is this is what you're describing - Mr S said I didn't have 'the double whammy'...whatever that means! X

Wishing everyone well - nice to see the sun out at last! :)

CarryOn I'm not sure but I think most of us have only had the blood work done. I didn't have the uterine biopsy. Not something that DrS does and I went straight to him as my first port of call in the private sector. Have you had your bloods done yet then? Did you get the uNKC test done elsewhere?

Hi CarryOn
I have border line high uNKs (5.5% and the top margin of normal is 5%) and normal NK's when not pregnant, but quite high NK's when pregnant (30%)

Have been seen by both Coventry and Shehata. I don't think Dr S checks anything within the uterus though, which is the Coventry team's focus. Also, their NK theories are completely different I think. Shehata claims that it's the NK's which attack the embryo whereas Coventry claim that uNK's are an indication of inflammation within the endometrium caused by stem cells malfunction/deficiency.

Have you been seen at Coventry too? Good luck with results this week!

Yes Seekingmiracles, you're right, I did get confused with tryingno1 :)

Hope everyone else is doing well xxx

Thank you bubaki76
still trying to understand this.
So did you have NK cells tested when pregnant? and was that just blood or also uterine?
Were you given steroids or any other treatment?
I have not yet gone to coventry.... might do. However if my blood NK cells are normal was not sure if it's worth doing a uNK test.

Hi Carryon,
Coventry take a sample from the uterus and perform a cell biopsy so they don't look at bloods at all.
Shehata does a test for NKs in your bloodstream which he then exposes to artificial pregnancy conditions to check how the NKs react and also which drug gives better reduction. In my case I showed normal NKs when not pregnant and high when pregnant, with bad response to prednisone and good response to intralipids and IVIG. So Shehata put me on pred whilst ttc in order to reduce my thyroid antibodies but if I get a BFP I will need to her intralipid infusions for the NKs.
Coventrys treatment plan consists of pred and progesterone from BFP - although they also give progesterone whilst ttc for 7 days, a week post ov, for 3 consecutive cycles and no more (as it may end up having a contraceptive effect if used for prolonged periods of time)
Hope that makes sense!

Also, for what it's worth, I think it's worth checking your uNKs as they seem to be independent to your blood NKs X

Hi everyone

Just thought I'd let you know that a new secret FB group has been set up to support women going though this grim old process. To make sure it stays reasonably manageable there are some ground rules:

1. Women only (which means no shared accounts)
2. What's said in the group , stays in the group
3. Be sensitive to other people's triggers so no scan, bump or baby photos please. If you want to share these with someone in the group, please do so over PM. Pictures of sticks you've peed on in the thread's comments - post something like 'trigger warning - photo in comments but it's good news' and then put the photo in the comments
4. This is primarily a community for women who've had multiple miscarriages. Talking about other stuff is fine, but please don't clog up the board so people can't find advice.

If these 'rules' sound ok to you and you'd like to join then
How to be added

1. Members are free to add people they know personally (including people they know from other forums) as long as they are women who've had multiple miscarriages. If the group starts getting unwieldy and too big to manage then the admins might have to cap the numbers

1. If you want to join but you don't really 'know' anyone then pm me about it.

All that being said this thread is a great place to build a community

Just got home from work to find that I've started spotting brownish red colour. I'm hoping it's just the pessaries that have irritated my cervix but I feel gutted

It's my cousin's baby shower this Sunday and I'm supposed to be helping set it up and taking pictures...if things deteriorate I really don't think I'll be able to face going

Oh Karry, I'm sorry you have this worry I really hope that it's nothing to worry about and just a bit of old blood. Brown is ok. Keep an eye on it, rest, relax and try to keep positive. Have you got a scan anytime soon?
And with this baby shower, if you don't feel up to it don't do it. You have to protect yourself a little bit and we all know how horrible baby showers can be when your going through miscarriage issues.

thank you all for your replies. makes a bit more sense now.
I will see what Dr S has to say on saturday.
karryk - hope it all goes well for you.
bubaki76 - I would like to join to fb pls

Thank you seeking and carryon xx

Will see how it goes. Going to have an early night and try to think positive thoughts. My first scan isn't until the 18th. You're right about the baby shower...if events mean I can't go then I won't go

Xx