Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

Oh my darling @VenusStarr sending hugs! I am so sorry. It’s so unfair. Please be kind to yourself.

Hi ladies, thought this might be the best place to ask. I’ve a history of recurrent miscarriage and no living children. Is it possible to get a referral to Dr Shehata from out of area on the NHS (I live up north) and if so would he do all the immune testing/relevant treatment protocol? I e had the recurrent miscarriage tests locally, only known condition I have is hashimotos, my last loss was a chromosome problem picked up by Karyotype testing in case that would be relevant.

@VenusStarr oh my sweet there are no words there really aren’t. This journey is just so unfair and there is no rhyme or reason. I’m always here if you need me and please know I’m thinking of you ❤️

@VenusStarr So so sorry to hear. I know you feel like crap at the moment but we are all thinking of you and sending hugs.

@VenusStarr Sending you lots of love and many hugs ❤️ 🫂

Hi everyone. Thank you for the love and support ❤️ I decided to not go for the blood test as already started red spotting. Surprisingly feel alright, just more fed up. I don't think I could have done any more than I did.

I'm just having the morning at home then got to go into the office. I'd already booked tomorrow off so have booked a hair cut in. Am going to tint and curl my eyelashes as well. I was also looking at tattoo ideas last night. I don't have any but have wanted one for a while to represent our journey and little ones.

We're also looking at a short city break early next year. So hopefully can book that soon.

It's fucking shit. But I know I'll be ok ❤️

@VenusStarr I'm so sorry. I wanted more than anything to log in today and see good news from you. This journey is cruel and unfair and it feels like you've had more than your fair share of it. Thinking of you ❤️

Hi ladies had my MVA today. Was over an hour late going in for my appointment in a room full of mums with toddlers shared room with family planning ffs so my pain killers were starting to wear off. . Am so glad it’s hopefully all over although the dr said she wasn’t sure everything was out but she didn’t want to over strip the lining which I agreed with. I needed an injection to help slow my bleeding but when I got home lost a giant clot and that seemed to slow the bleeding a lot thank goodness I was getting a bit worried they said I could go on the ward for a while to monitor the bleeding but me and hubby ran for the hills. Got antibiotics so hopefully this is the end/beginning. I’ve now had tablets, d and c and mva. Think the d and c was the easiest and least traumatic. I had a green whistle with some magical gas in it tasted awful and made me cough but then I was in la la land I wish they’d let me bring it home xxx.
here’s to better things ahead for us all. Our ivf clinic called today and said they will still let us do 3 for 2 cycles which is awesome but I’m not sure I have the energy/inclination to go ahead.
@VenusStarr thinking of you sweet, here’s to tattoos and gorgeous hair ❤️❤️❤️

Oh Gismo1983 glad you have the worst bit done. Doesnt make the situation better but it's one more thing dealt with. I have a feeling you will go ahead again when you feel ready and I hope you do. It's a fight you so deserve to win and you will doubtless want to look back on and know you tried everything but mentally it is torture, i hope they got everything out for you. I was lucky with my D@C last year, didnt have any trouble afterwards. Look after yourself x

You are right VenusStarr, it is fucking shit and if I ever meet the maker I have a lot of questions!!
I so hope you enjoy the things you have planned upcoming. Sending hugs.

Well done @Gizmo1983 - that sounds like a horrid ordeal, hope you have had a restful evening and are taking some time off this week. Are they giving you another scan this week to make sure they have got everything? I agree the D & C is the least traumatic, but recover from the GA is just a bit longer. What does 3 for 2 on IVF mean? take your time off but I always find it helps to have a plan once i have physically recovered so i can look forward. Its just such a head f*ck :(

@VenusStarr how are you doing today? love the pampering and eyelash curling - i have always wanted to do that too. Also a tattoo - i have put this off too but really want one.

welcome @Notsure31 - i am not sure on catchment for NHS referral to Dr Shahata at St helier and Epsom. I think there tommys clinic at Coventry also do the same testing and could be a good option if you can get a referral there. I think the wait list for NHS is about 9 months for Dr Shahata - but worth talking to your GP. He doesn't do intralipids on nhs, so no need to be there as much- But if you do get a successful pregnancy - you would have to go every 2 weeks for a scan.

Hi all,

Got the results back, basically high for everything they tested, including NK cells. Got to be on 25g daily of prednisone and some other tablet to protect stomach lining and have the intrippilid infusions once in each trimester next time I conceive. That’s a pretty high steroid dose but the other option was four IVIG injections at £2,000 each so we are going with the steroid and infusion option, which will be around £2100 per pregnancy but will be worth it if it sticks.
I’m concerned about my lack of immune system with the steroids as I work in a very people based environment and have no choice in that. But doc reckons either treatment should work as well as the other and I don’t have the sort of cash required for either so it will be another loan!

Hi Carportforme,

I had some tests done by Dr Gorgy & My results were in range but at the very top end for some results. I was on 25mg of prednisolone as a precaution also because I had a previous loss. I was also recommended either intralipids or IVIG (sorry can’t remember which) but decided against it based on my own research & the cost factor plus knowing I am too ill during pregnancy (HG) to travel anyway. I would say if you can’t afford it I would do your own research to decide if you really want the intralipids. However I totally understand if you feel like you just want to try everything. I would have done so for the next transfer had I not been fortunate enough to have success.

Ah fabulous to know you were successful. That's great to hear. I will probably have the intralipids since it is cheaper to have them with pred than just go with IVIG injections.

Hey guys, hope everyone is well. a little update from me... got a very faint positive today. trying to feel hopeful and will test again over the next few days. Please keep everything crossed for me. xx

Oooh Jecca88, good luck, so hoping this is it for you x

Hi all, so I have decided to go with the pred and intripilids For treatment but now I’m reading that intripilids Contain trace amounts of peanut oil. My consultant is aware that I have a severe nut allergy so I’m assuming that not all have this but has anyone else with a nut allergy had intripilids? I’m pretty worried now. I really can’t afford IVIGs

How is everyone doing?

@VenusStarr how was the hairdresser? Any more thoughts on the tattoo? Have been thinking of you.

@Gizmo1983 how are you recovering?

@Carportforme sorry I can’t help on the nut thing - I haven’t heard of that! Hopefully your consultant can help further. The IVIG route is definitely a pricier route, the intralipids are bad enough!

@Jecca88 crossing everything for you

I’m doing ok physically, the bleeding has stopped after my MVA. I think I’ve probably had some ovulation cramps. Emotionally I’m still up and down. I had a check up and the doctor said to try not to conceive again for at least 3 months, but preferably 6, has anyone had similar advice? I’d much rather get on with TTC again, I’m not getting younger, the potential gap with my DC is widening, but I don’t want to risk another miscarriage.

@Carportforme thank you and sounds like a plan. I don't ever remember there being a peanut allergy thing on the intralipids. Are you having it with the CRP?

Thanks @v60 - i wonder why they said 6 months. I have always waited for the genetic results after a D&C so tends to be 2-3 months but don't they usually advise to wait until your first period. Hope you're taking care of yourself.

Got another positive test today - with line progression so booked my next set of intralipids this week. Feeling apprehensive. So worried it will be another blighted ovum :( but trying to focus on this is a new pregnancy.

@Jecca88 So glad your positives are still going, great news,
I phoned my consultant's PA today to discuss my concerns and she asked him. He investigated and unsurprisingly I am right and I cant have the intralipids. So i am just going to have to stick with the pred and pray i think.
I'm not with CRP. I did loads of research and the peanut thing was mentioned a lot. Really worried now to be honest.
I know it's not an exact science, but.

If anyone was advised to have pred and intralipids but only had the pred and had success I would love to hear about it.

@Jecca88 this is amazing news congratulations ! I had a feeling it was going to be a positive for you this month!! So exciting. When will be your first scan to reassure you, will it be a couple of weeks ?? How are you feeling on the prednisone, has it given you insomnia or anything ?? Xxx

@Carportforme that is unfortunate about the intralipids. I have look at my notes and they look at the effectiveness of pred, IVIG and Intarlipid against suppressing the NKC - IVIG is the top, then its actually pred - so i think you pred could be effective on its own :) fingers crossed. When are you starting on the pred?

Thanks @Meg310532 can't quite believe it - i didn't feel any symptoms at all so was shocked to see a positive. I am peeing loads. Pred hasn't effected my sleep at all tbh. I feel ok on it :) its more now needing a wee waking me up in the night. Got my intralipids on Thursday and then suspect they will book me in for first scan around 6 1/2 weeks - so first week in December - I haven't seen a heartbeat for three years since my first MMC so the first scan is a big one for me. When are you starting to TTC? Can you start in Dec?

@Jecca88 it’s such amazing news but I can imagine it probably doesn’t feel exciting yet as it’s just filled with anxiety’s I know the feeling. Have you felt supported with CRP? I have felt like with other clinics I get pregnant and then just left to get on with things and worry and guess about everything. Yes I am waiting for my aunt flow to arrive I think it’s expected in about 8 days and then I can start! Feeling excited but also anxious. did you test 10 days after ovulation or wait till 2 weeks ? X

My consultant wants me to start the pred from first signs of a positive test so he said to test from 10 dpo and if there is any sign of s line to start straight away. Hope you are right. Looking st my results, the pred alone should reduce my dodgy nk cells to around 11 %. Hoping this is low enough.

Hi all, anyone got any idea what the active NK cell level needs to be for a pregnancy to have a chance of success. I consider myself to be quite good at finding info on these things but I just cant find any consistent info on this, I'm looking at what my consultant says different treatments should reduce my levels to but I cant find what they need to be and for some reason I dupidnt ask. I was probably too afraid if tge answer!