Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

[Hula2]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Typo

lot of clinics use it despite not having an ivf issue. So I'm on it too.

Mean immune issue. Not Ivf issue

Ie loads of clinics use it in ivf even if nk cells and clotting is normal.

That's reassuring, I'm just torn between doing everything or just aspirin and progesterone like last time.

I think I'm anxious that by using mess that I'm not 100% sure I need I might cause a problem but then again how do you ever really know what's right? I could use just aspirin and progesterone and it might fail due to a problem with the embryo, I'll the think it was the lack of steroids and clexane- you just don't know. I think that's what is so frustrating especially as I was so sure last time it would work

*meds

Waiting I had one immune ivf cycle and still miscarried. I'm telling myself it was chromosomal to feekl better!! My first 3 bfp where with no immune tx and I also miscarried! So who knows!!! I'm going with the immune tx this time and a little more aggressively than last as I feel too scared without but it's a hard descion to know when to not to do and when to do it.

Do you have to stay on prednisone/clexane/aspirin for duration of pregnancy ? (Sorry for all the questions, I always write a list for my appt then get muddled up and forget things as I'm so stressed).

I've ordered the book mentioned too, it's coming tomorrow so I can read it before my appt on Friday and have more questions ready

First trimester only for pred and clexane usually unless a clotting issue is known.
asprin I think whole time

No worries it's confusing stuff! Make a list! And don't be afraid to take ur list out and check u asked them all! That's wot I do :) I prob look like a nutter!

I think they are getting fed up of me. Every time I go I keep reiterating that opk don't work for me (pcos) and asking for scans more often to see follicle size (natural FET so I'm paranoid about missing ovulation) we only have two embryos left (day 2) and I want to give them the best chance.

I'll have even more questions on Friday !

Good look waiting. It's so hard to navigate through and u want to know u have it the best chance! Sometimes things just work out when we do everything and sometimes when we do nothing! It's really quite bizzare but hope u get ur happy ending X

Hope your appointment goes well today waiting X

Yes good luck waiting!

How are you Seeking?

And Trying? Feel like AF is on it's way or not?

Hope everyone is well (snoopy, hula, sunny, billy, rosa, anyone lurking)!

Hey everyone. At work so can't post lots until later. Thinking of you all

You can book Shehata through the NHS for NK cells but it takes longer to get test results back.

Thanks everyoneZ it's my first time using this and I got no notifications do no idea how I found all these replies! Thank you. Very nice to hear success stories. I'm having a 5 wk scan on Sunday as I can't take the emotional torture anymore!!!

Hi ladies again. I'm having a 5 wk scan on Sunday - I wonder is it too early..?

Tumtime great to hear about your scan and that ur in same treatment as me! There is hope!

I'm ok thanks drttc, bored of time going so slow already! Lol!

Amelia- it's unlikely that at 5 weeks you'll see much more than the pregnancy scan and foetal pole. Heartbeat is normally seen from around 6 weeks, although with my last pregnancy the hb was seen at 5+4. I'd push it back a week if I were you, not seeing a hb will only make you worry, even if in your head you know it's too early iykwim?
I've got my first nhs scan next Friday at exactly 6weeks and scan with DrS the following Wednesday at 6+5. Absolutely bricking it.

Afternoon everyone,

Delurking as am gearing up to start my first immune cycle and have read most of all 18 of these threads. That's a lot of messages! Hate to hear about everyone's struggles but success stories are so welcome - there might be light at the end of this tunnel after all.

@ waiting - thought you might be interested to read this study (or at least the synopsis) about the benefits of a natural cycle as opposed to a hormonally manipulated cycle.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3114968/#!po=0.625000

I've been backwards and forwards with what to do as well - it's so hard to decide. I've eventually decided to go with aspirin, clexane and cyclogest plus the steroids and intralipids. My clinic recommends down regulating and a full medicated cycle but like you i really worry about what this is doing to my body, particularly as this time last year i had severe OHSS. I know there's no link to this treatment but I'm still twitchy.

Hi all

My appt went well yesterday. My lining was good and now just waiting for lead follicle to be large enough for me to have hcg trigger
Clinic prescribed my meds but said they only do them till positive test but I explained I've read so much and would like them till 12 weeks if I get pregnant and they said that's fine
I have another scan on Monday so fingers crossed all is well and the follicle had grown! Opk are so unreliable for me so I'm pleased they are checking with scans

Glad to hear your appointment went well Waiting- Good luck for Monday :)

Had scan this morn and too early to see heartbeat but sac in right place and lining healthy. Relieved it's not Eptopic. Just have to get this little heart beating now! The consultant said he would have prescribed progesterone had I not already been on it (two doses of 400 pessaries a day). That study "the promise" carried out by Lesley Reagan is biased. It's so crazy that she has said not to take anything and nothing wrong with me and on the other hand 3 separate consultants have prescribed progesterone, clexane, intralipids, and prednisone! (High NK Cells). Honestly so glad i got second, third and 4th opinions! Hopefully this is helpful to others. X

Glad you saw the sac Amelia sounds like it's all going well!

Ha you had any side effects from the steroids and what dose are you on and for how long if you don't mind me asking?

I have anti thyroid antibodies and also asthma, eczema and allergies and direct family members also have autoimmune issues (crohns disease and type 1 diabetes) so they've said nk cells/immune issues are probably the reason for my failed FET last year

I'm just a bit worried about side effects from the steroids

Great news Amelia
I think a lot of specialists will still prescribe progesterone regardless of the promise trial. Probably more to ease a patients worries than anything. But I have to say in glad that I have it to add into the mix.
Have you got another scan booked?

Thanks Seeking and waiting. I'm on 25mg prednisone and clexane too. No side effects yet except trouble sleeping one or two nights but not every night. Have you got tested? Some recommend taking it from ovulation but I took from positive pregnancy and gave heard of others doing so and all being fine. I read taking them from ovulation lowers your fertility... From the frying pan into the saucepan! I have an early NHS SCAN booked for next Thursday . Will be 5 wks 5 days - maybe still too early for heartbeat?!

You might still see something... But it is still early. Hope you do. These early days go so slowly....

I have to take it from 'day 0'. I will have my trigger for example say it's Monday then that means wed is day 0 and I start all meds then and have transfer on Friday

I'm getting so muddled with all the medicines and timings ! I'm going to have to write it all out as am already on levothyroxine which I take before breakfast and obviously folic acid and they also said to take vitamin d. I have ferrous fumarate as am anaemic and then from 'day 0' I will have to add in aspirin and prednisolone tablets and clexane injections and progesterone pessaries and I'm worried I will forget something!