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!

Sorry sorry sorry, kept forgetting to check in. It's half term and dh is on night shifts so I've been solo parenting including last weekend and am shattered... The 8+5 scan was fine, got some amazing images! It's the furthest we have got since we started having mc problems so it was a huge psychological boost. But now I'm deep in the between-scan fear and anxiety. Not helped by cocking up my pred yesterday, not taking it till 11am, and being awake since 1o'clock this morning. Or was it 2 o'clock because the clocks changed? Brain too frazzled to know. Next scan on Thursday, roll on Thursday. Or don't, if it's bad news... I think it will actually break me if we get this far then lose it.

We've begun to talk about the future a bit, when to tell people etc, and I have my first gp appt tomorrow. It will be too late to get the nhs 12-week scan but I'm going for the nuchal fold one with Mr S's consultant instead. Now I'm scared that talking about the future might have been premature and might have jinxed things. Argh, it's all screwing with my head!

All going well thanks drttc, keep having to pinch myself that she's really here and she's ours. She's an absolute dream!!

Glad your scan went well yomping - I didn't see my GP until 10 weeks and still got my NHS scan, they can do it up until 14 weeks any way I think. They'll just rush the appointment through for you.

Sorry you seem to now be getting chemicals backtotheplanet, not sure why that would be. Have you spoken to DrS about it.

I'm afraid I can't help with your results user, has anyone (Dr/Nurse) given any light. Not good that they'd give you the result without an explanation...

Hello ladies - I've been lurking a long time and would like to rejoin . I have been in this and many other pred threads previously I Would be really grateful for your advice. I've previously been a patient of Mr Shehata's - had many chemicals and early losses and two later mc's at around 14 weeks. I am blessed with two beatiful sons who are my world. I understand things have changed somewhat since I was last under Mr Shehata and am wondering what to do. This morning I have a faint line on a frer. I am scared to get to too excited although I am excited! We have tried for a couple of years and tbh this has taken me by surprise as I am older and sort of thought it wasn't going to happen. Anyway - last time I saw Dr S he said the killer cells had gone back to a normal level but I would still need pred if I conceived as I have hashi's and thryroid antibodies. I am now panicking somewhat as I have no steroids etc. Will they given a prescription to hold me on to a first appt if I hopefully get that far? They did this in the past when Louise was there but I understand she has left? So sorry for a selfish me me post - but am panicking xx

backtotheplanet I have no experience of chemicals. Probably best to speak to dr s about it.
Yay Yomping! So pleased for you. I've got everything crossed for you for Thursday.
MattsMamma I only just started dr s treatment (second month of pred) so I'm not sure how you go about getting the steroids. Actually, I'm due to test on Wed and I will also be taking my last dose of steroids. I don't think I'm pregnant as I don't have any symptoms (though I never had symptoms in my previous pregnancies) but I am out of steroids as of Wed. What do I do if I'm pregnant? Do you guys know if I can get a same day appointment to get more steroids? I'm probably stressing over nothing as I'm sure I'll get a bfn .

PJ12 - thanks for replying

I'm pretty certain. That they would send a prescription in the post for you straight away if you get that BFP - fingers crossed for you!

You can get a prescription in the post PJ, I'd maybe call them today to get it sent out so that you have some sooner rather than later x

It's definitely a chemical for me this time. I spoke to Dr.S last time and he basically said, at least you have conceived, step in the right direction etc. But now I've had a second chemical in 4 cycles of superovulation when I've never had them before means I will push for a better explanation. It's useful to know that it's not common among his patients, so thanks for the replies!

Good luck yomping and matts mamma, keeping my fingers crossed for you guys.

Hi ladies,
I am new to mumsnet and looking for some advice. I have gone through two miscarriages earlier this year, one at 12 weeks and the other one at 6 weeks. A couple of weeks ago I went to see Dr Shehata in Epsom where he talked me through what he does and all the tests he works with. I was given a huge list for blood tests as well as an ovarium test. I took a couple of blood tests I had done via the NHS after my miscarriages and hoping that it will reduce the list he gave me but he told me they were not good as those are just standard test and will not give him anything however he took a copy of the results anyway. I am a little bit apprehensive about all of this simply because there is no estimation as to what the cost be for treatment. Just the tests will cost me £2K but until I do them and get results I will not know how much the relevant treatment will cost. I asked to have a price list for the medicines, injections etc the things he uses in his treatments just to give me an idea and try to see if I could afford what is to come but they told they could not. Would anyone here have an idea of what I could potencially spend after the tests. Is he really that good? I have heard and read about him and the couples he has helped and found nothing or no one saying anything negative or not having a positive result. Any advice, I really would like to have a baby, I am 42 and as you probably know running out of time :-(
Thank you

BACKTO - so sorry it's a chemical. It's just so cruel to see that BFP line to then have it taken away. I have had quite a few unfortunately and I know how crushing it is. I am currently in the limbo state of having got that much wantded line and now waiting. It's just so bloody nervewracking. From being a POAS addict each month I now find myself almost terrified to pee on one. Sending you a big 🤗 hug x

mochita1108
I went to see Dr S. I depends on what the results show, I had high NK cells so needed 2 doses of intralipids on BFP (cost around £140 each), prednisolone, aspirin, on clexane and multivitamins.
It also depends if you have a supportive GP who would be happy to prescribe these for you. Otherwise the prescriptions and the meds could be expensive too. And also the trips to epsom depending on where you live.
good luck!
I have spent around £4000, am now pregnant (no kids yet) after recurrent miscarriages so keeping fingers crossed!
good luck!

mochita it can be expensive, and I was very apprehensive about the cost with no scientific proof that these treatments work, but it seems to be working so far for me. My treatment is intralipids every 4 weeks until 16 weeks (I think) at £300 a time, fortnightly scans and consultations until 12 weeks at £210 a time (the first one was more expensive) then 4 weekly after that, meds at an average of £30 a visit, and aspirin and supplements, the cheapest I can buy! The last 2 months have each cost me nearly £1000 which I'm mainly trying not to think about. The cost per month comes down as the scans get more spread out after 12 weeks, if I get that far. I am lucky I get free train travel through DH's job, which helps.

I am 41, have had 5mcs in the last 2 years after having no problems with my first pregnancy, have had all the nhs tests and seen prof Quenby, and mr S is the last chance saloon for us, so we decided to just go for it because at least then we have tried everything we can and if it still doesn't get us anywhere, we will know that it wasn't for lack of trying.

Sorry it's another chemical backto ** I hope you can get a better explanation when you connect speak to Dr S.

Mochita - our costs basically totalled about 5k.
Initial tests 2k
Pred was about £30 a month
I only needed one dose of intralipids at 6/7 weeks - which at the time were about £240.
Consultation and scan every 2 weeks @ £210.
I was discharged at 14 weeks.
I was probably TTC for 10 months with one mc at 9 weeks in the middle of that.
I had my cyclogest and Fragmin prescribed by my GP

Sorry about the chemical backto
Mochita our cost has been similiar to everyone else's. About 2k for the initial tests, I've been prescribed pred and once I have a bfp then it's intralipids X 4 (£300 each) plus fortnightly scans. This is my second month on pred and dr s wants me to go back for a consultations (£150) to check my blood pressure, see how I'm getting on with the steroids and just for a general discussion. It's not cheap but really hope his treatment plan works for us. I've had 3 miscarriages in the last 10 months and I cannot bare to go through another one.
MatsMamma did you manage to get pred? Are you going to see dr s? Crossing everything for you xx

HI PJ - yes thank you - they are sending me a prescription and I have an appt for a few weeks. Just so nervewracking. Period not really due till Friday - so am extremely nervous. it's just a waiting game that begins with the elusive BFP when it shows.

Thank you ladies for the information. It looks like the original consultation cost is pretty standard for everyone. Has anyone experienced or know people that have had no luck with DR S treatments ? Good luck to the ones already pregnant btw! I am thinking of you and hope it all goes well.

10+5 scan today. Wiggly baby measuring 11 weeks. All good. Can't process this.

Yomping so happy to hear your great news!! Delighted for you 😃

Amazing news Yomping! So happy for you.
Af showed her ugly face today . I know I shouldn't think this way but I hope pred isn't messing things up for me. I've been pregnant 4 times and it has never taken me longer than 2 months to get pregnant so I was pretty disappointed. Onto cycle 3 Also, has anyone's period changed after miscarriage? I used to have quite heavy periods and they got a bit lighter after I had DD but the last couple have been really light and lasted 3 days.

Hi all, I hope you don't mind me joining. I have a history of recurrent miscarriage. My last one was a mmc at 11 weeks (baby died at 10 weeks). This was nearly 2 years ago, I haven't been able to cope with trying again since. It was MC no. 4.

I was seen in the RMC at St. George's who found no problems but they didn't test for NK cells. Do you think any of the consultants who do the NK testing will take into account the results from the RMC which might reduce costs? Or will we need to pay for everything to be re-tested?

The outcome of the RMC was a recommendation for progesterone, aspirin and maybe steroids (can't remember the name off the top of my head). This letter is with my GP so that's at least an option when / if I get pregnant again.

I've just pulled out the letter and the steroid is suggests is Predisolene which from reading is the steroid often recommended by Dr. S?

Kirin sorry for your losses. Can totally empathise with not wanting to try again for a while. Yes, prednisolone is what Mr S puts people on, in fact I am on all 3 of those meds, plus intralipids which, like steroids, shut down the immune system.

Mr S did take some of my previous tests into account but lots that he does aren't done elsewhere so be prepared for a big whack of expense.

I'm not sure I can afford him! Do you have any side effects from the meds?

Congratulations by the way!

Had my appointment with the nurses at Dr S today for all the tests he recommended. Surely expensive but hopefully worth it. I will go back to see Dr S on the 22nd Nov for my results. I am so desperate to hear what he has to say. JompingJo very happy for you! Stay positive:-)

Hellos ladies - hope everyone is ok. MOCHITA - I have previously been a success under Mr Shehata's and have only praise for him. Obviously nothing is guaranteed but I have heard of mainly success stories with him. The only ones I have heard of failing are extremely complex immune issues and even then it hasn't always been a fail it has just taken longer. Other people may obviously have different experiences.

KIRINM - sorry to hear of your losses. I too took two years after my first mc to even find I was able to think about trying. It was so traumatic I every sense. The psychologIcal aspect of it never leaves you. I hope you find success in your ttc journey .

I am now on day 6/7 of taking the prednisolone. I am so anxious its untrue. I am over analysing everything! Keep prodding my breasts which are fluctuating all the time and certainly seem to have become less sore. Obviously the prednsilone masks pregnancy symptoms but this is not reassuring me - I have been here too many times before not to be nervous and it is just awful. Constantly checking knickers etc etc - these are anxious times

YOMPING - great scan news so pleased for you x

PJ12 - hope your ok. My periods changed a lot after mc nut they always seem to level out eventually x

kirinm I have had weight gain and oral thrush, and sometimes the steroids
affect my sleep. But hey. I'm nearly 12 weeks pregnant, so I'll take the side effects.