Immune /natural killer cell treatment when ttc or pregnant (aka the 17th 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

Thanks girls,
I'm 11dpo. And the only reason I think I haven't some on is because I've been on progesterone. Haven't taken it today so will hopefully see af soon enough.
It's only been 2 months of trying so I hope I'll get a prescription from him.
I hate calling louise, I find her very cold. Maybe I'll just email her.
I doubt my GP would be so kind as to give me the drugs
Thoroughly down in the dumps today! Roll on tomorrow!

Mr s will have sent a letter to ur Gp so he could prescribe it. Mine very happy to but I suppose as I'm a doctor too Maybe they were more amenable!
Sorry seeking :( it's pants! Have u got some chocolate to cheer u up? Or dinner with dh? (I know u just went out for his bday!)

Had decided to give up cafeine today in run up to ivf
Sitting here with a large Americano!!
Will start tmrw

My gp was also very good, he gave me steroids and progesterone on prescription. However I used to call Dr s office and ask for a prescription snd they would give me one.

Sorry about the bfn's - it never gets easier
You're being so good trying cutting all this stuff out!

I feel better for it! My skin is better and I've shifted ten pounds. My clothes fit me and I feel better about myself! I just want to shift some more. Plus I know that it will be doing my eggs some good too. I think I'm a bit of a control freak hence prefer doing something rather than nothing!

Hi ladies
I'm new to this thread! :l

Has anyone suffered a chemical pregnancy on Dr Shehata's programme? I've just suffered my 4th miscarriage (chemical I guess but not discovered until the 7 week scan, prob due to cyclogest)- first preg with Dr S - and wondering whether to try again!
Found it very stressful getting preg taking the prednisolone each month and now been on it for 8 weeks with last chem preg. Not sure I can face going back on it each month! Am considering just taking it with BFP.
Any thoughts/experiences?
Many thanks

Hi Billy,

Sorry about your losses :(

I'm in a similar position to you. I've had 4 chemical pregnancies, the last one was my first pregnancy on the programme. Sadly I don't really have any advice as I'm confused myself! Dr S recommended I try Intralipids before ovulation, which I did for the last few months and have not gotten pregnant. Now he has changed the intralipid availability to only be in surrey (and raised the price). Due to this, I can longer do Intralipids before ovulation every month (taking a day off work) in the hope ill get pregnant... So I'm going to try the regular programme again. If I have another loss I'm going to switch to Dr. Quenby in Coventry!

Hi Drttc
I'm sorry for your losses too! It's so hard!
I had my intralipid with Heathcare at Home - I think it might've been because they were full in Surrey but maybe its an option for you? It was £270 for them to come to my house, or £170 in their clinic.
I've an appointment with Dr S in a couple of weeks so will see what he suggests. But I find getting pregnant so stressful now with the extra medication = extra pressure to get pregnant.
Have you tried the Super Ovulation Programme? I did 4 months without it on Dr S programme, then 2 with and got BFP on second try - which ended in this mc. But problem is you have to have scan on day 10, although you can have this in another clinic (£100 charge from Dr S).
I saw Dr Quenby for the uterine scrape and got the all clear - this was before I sae Dr S and after my 2nd mc). Dr S says I have Complex NK Cells and I also have thyroid anitibodies. But Im now 42 so I don't think thats helping - and just found out my bf has low/suboptimal sperm so wondering if thats contributing to chemicals (my 3rd mc was a chemical too - the 2 pregnancies before stopped developing at 8.1 weeks).
Things have become so stressful for us ttc I think the intralipids before ovulation would be difficult - but I guess its a matter of perspective! My partner is finding all the intervention very difficult. Just wish we could go back to trying without it all!
Does it take you long to get preg? My first 2 were first try and at 40 years old I was shocked! But now its 6 months both times - which I know isnt long - but with the medication each month it feels like a long time! And I started to wonder if the medication isn't helping! Most prob to do with my age and bf but Im pretty paranoid about everything now!

Morning Ladies,

Welcome Billy, sorry for your losses Hun. It's horrible.
I'm with you in finding the whole process stressful. I started the prednisolone at bfp last time. That sadly ended in MC but due to a chromosome fault so completely bad luck. I got further than I had previously though. And I think sunny also started at bfp and she's happily pregnant now.
I think I'd give it another go. Stick with the programs and do what feels comfortable. DrS is a very knowledgable man, he'll give you his honest opinion.

Now waiting Af... We spend our whole life dreading af and then after a bfn we wish she hurry up! It's ridic!

Trying - well done on the weight loss! Can I have some of your motivation please! I used to run a lot, but now my spare time is taken up with dog waking! I'm going to sign up for a half marathon in Feb though...

Hi Billy

Yes I've had healthcare at home come to my house a few times now... But about a week ago Louise told me it would no longer be possible. Very annoying!

The first three times I got pregnant first try, the 4th time was on treatment and it took 3 months. Now it's been 3 months of trying with 3 BFN's and lots of money down the drain on pre-ovulation Intralipids. Pretty upsetting but I'm holding up! In the back of my mind I know I'd take a bfn over a miscarriage as they're such terrible times. What was Dr. Quenby's plab for you? And what did Dr S find? Did he tell you to carry on with the same treatment after your chemical?

Yes all the intervention can take the romance out of things and cause so much stress and pressure. The idea of just 'relaxing' or not thinking about it when you're on a strict medication regime that changes depending on your cycle day... Well it's laughable!

Seeking- the wait between my bfn and CD1 felt like forever! And you're in complete limbo psychologically because you can't even move on to next cycle. I've now started seeing my cycle as: horrible painful 'I feel fat' AF time, anxious 'when will it come' ovulation waiting time, stressful 'try to have fun' sex time, followed by steroid yucky meds agonizing second guessing time, culminated by 'there's nothing I can now this is furthest I can be from getting pregnant' time.... Makes my cycle feel 90 days long!!

Drttc - I wonder why they wont allow Healthcare at Home now??
Yes at first I wondered if getting preg easily might be an issue - that maybe non-viable eggs were implanting too easily. Now I just don't know!
Dr Quenby said to take cyclogest from ovulation - which I tried once but it messed my cycle up and af didnt start till 1 week after stopping them. So after that she said to stop them and just take them from bfp so no plan as such from her. Mr S found complex nk cells and thyroid antibodies. I haven't seen him since the last chemical yet but Louise said to carry on and that it was prob just a chromosome issue.
With your chemical on Dr S plan did you know straight away that you'd mc or not till the scan? Thats the thing that scares me with the treatment (cyclogest) that it might end early and I won't know again for weeks!

Seeking - Im sorry for your losses. Its good to find this thread, it's been such a lonely journey so far.

xx

Hi billy glad u found ur way over here! Hope u find us helpful and supportive!

My tb was negative so hoping humira will arrive Friday or Monday and then I'm off to Italy! I seriously need a break and not be driving down to Argc for one weekend! Had to do an ovulation stuck for some bloods Argc want and it's so weird doing it and not bothering with dtd after 2 years of obsessing over when I'm at peak fertility!

Billy- Louise said that other places don't administer the Intralipids the same way they do and that's how they want their patients to receive them... Very inconvenient!

Ah okay. How strange that Quenby didn't even prescribe steroids if she found NK cells?!

I miscarried at about 6 weeks 2 days last time. I went in for my 6 week scan and there was nothing on the ultrasound! I'm not sure progesterone can really hold off a miscarriage. I know many women fear that but I've asked and if you're miscarrying, it just happens. Also, I knew my hcg levels were terrible so I wasn't religious with taking my meds. My body felt completely normal (no blood, no cramps) and I knew I wasn't going to start miscarrying- until the day actually arrived a few weeks later. It was strange knowing so early on (4 weeks) that it wasn't going to work and just waiting for it to happen. Most women don't get their hcg check and then get the shock of their lives when they miscarry.... I just couldn't go through that again!

Drtcc I did the same with my hcg this time. Had it done at 5 plus 4. Was def better than waiting for a scan and getting the awful news. I hope ur lucky on month 4-are u mid cycle now?

Thanks Trying! Dr S didn't approve of me checking but... I'd do it again! I'm on CD5, usually ovulate around CD10, and test around CD20 (quite a short cycle really). So right about to start baby dancing... We're away this weekend with lovely plans so I'm actually looking forward to forgetting about things (as best we can) :)

Hi billy, sorry you find yourself here.

I don't Think cyclogest has hidden my miscarriages for very long and I've also found hcg tests very misleading.
My first mc was a mmc discovered via a scan at 11 weeks.
My second I guess was a chemical, I was on progesterone but started bleeding at five weeks and hcg tested after the bleeding was too low.
My third I had amazing hcg tests at four week but then I started bleeding at nearly seven weeks. I had been on full treatment from about four and a half weeks so agin cyclogest didn't mask things for long.

I don't really know what can put your mind at ease but in your situation your local epu should definitely be giving you lots of tlc and monitoring you closely with scans and blood tests if that would help reassure you.

drttc I've been taking the n acetyl cysteine since the last mc. The results I've seen in studies online look really promising so I figured it wouldn't hurt. Are you also taking the wobenzym? I'm taking that as well.

trying I loved Italy, oh the pasta and the ice cream, amazing. Glad you're getting on well with Argc as well .

seeking sorry it was a bfn. Hopefully your body is waiting for that really great little egg, then you know the treatment works and fingers crossed it will all be plain sailing!

Hey snoopy! Yes I've been on NAC and ubiquinol since my last miscarriage (3+months). I've also added vitamin b6. Here's hoping we get position results from it!

Trying- Italy sounds like such a great time away! Have a lovely time:)

Welcome Billy, so sorry for your losses, glad you found us and hope we can help on this journey, it def helps to have a place where people understand.

I m 40 and ttc my second so i understand the added age pressure. I struggle even falling preg, ds took 2yrs at age 35 and i ve had no luck now for 18mn since my mc. I also have low amh. I m just about to start cycle 5 of dr s SO programme. We re giving it the two more months of SO and then i feel i need to step away. If it happens by itself after that then i suppose i ll just start taking meds from bfp but I completely understand how tiring it is with the constant pill taking and dtd to doctors orders. Many ladies still have sucess waiting till bfp to start pred/prog.

I guess if your bf s sperm numbers are low then you might have improved chances doing SO with iui, but that may be more intervention than he s happy with.

Maybe give yourself a month or two off meds and just ttc naturally while you recover from your latest mc and maybe when the pain of that is less raw you ll feel more able to face the whole full on programme, this whole thing definetly needs mental stength to get thru it.

Snoopy - how are you feeling ? I hope you re managing to get some sleep. Stay positive, we re all rooting for you and your little bean.

Trying - good to hear you ve got the go ahead for humira and have an amazing time in Italy.

Seeking - hope you feeling better today, looks like we ll be cycle buddies again next month.

Drttc - your description of your cycle made me laugh because i could so relate to it. I m just trying to reset my thinking now to 10dpo bfn being the 'end' of one cycle and ignore the fact its another 5 days till af comes (which should be tomorrow for me), but yep when you add in SO drugs and scan or doing intralipids it sometimes feels like being stuck on one big hamster wheel. Good luck with the baby dancing and hope you have a great weekend.

Waves to everyone else.

We should indeed be cycle buddies again hula, that's if af decides to arrive. I think the progesterone may stall things a little though...

Drttc - My results from Dr Q's uterine scrape were normal so she didnt give me a plan apart from cyclogest. But I went on to have another mc so then went to see Dr S and was told I had complex nk cells in my blood.

Interesting that some of you ladies had a scan at 6 weeks - I was told 7 weeks was the earliest, which I thought was a bit shit considering you can see the sac at 6 weeks. Partly why I was so angry this mc because Id spent 5 weeks meditating on a baby growing and then got to 7 weeks to be told theres nothing there! And taking all those meds for so long for nothing. This is whats putting me off continuing.

Today I came off the prednisolone completely which is a relief! Did anyone have any side effects to prednisolone? I think its made me more angry but hard to tell if thats just all this shit making me angry!

Hi Hula2.
Its great to chat to you ladies and thanks for welcoming me into your group xx

Hi billy

Welcome to the group. I had a mc in January on the treatment - happened at 5.5 weeks after 1st intralipid and was on progrsterone too but my first sign of mc (well all 3 I have had) has always been spotting. That mc made me realise that (despite us wNting it to be) the meducation plan isn't a miracle cure it's just there to try and help support a pregnancy.

After seeing Dr s he added hydroxy to my meducation plan, and was also doing SO but then we took a break as we had some results about DH sperm that we needed to work on. I decided to remain on the hydroxy but stopped taking the other meducation but we made the decision to carry on trying and what will be will be. The very next month I fell pregnant and I'm now 23 weeks - I feel very lucky to have got this far. As soon as I found out I was oregant I was straight back on all the meducation - I guess I'll never know why this one was successful - was it the hydroxy added in, was it taking stuff from BFP rather than ovulation ( although Dr s dissmissued saying I had been following the protocol for 8 months so the steroids etc were still working in my body), was it a good egg and sperm or a combination of everything?

I guess what I'm trying to say is try not to lose hope, in January I was devastated that my 'miracle cure' hadn't worked but 12 weeks later I was pregnsnt and fingers crossed this is it. If you look back at the earlier threads quite a few people had a mc in treatment but went on to be successful xx

Thanks Sunny, I'm really happy for you, thats great! (brought a tear to my eyes!)

Im tempted to take a break from meds and see what happens mainly because its got to the point where I feel so bitter about it all and I dont think thats a good place to invite a little bean and wonder if that contributes to the mc - if you know what I mean! But also from being on pred for 6 months trying then 9 weeks on this last preg. (sorry I prob repeating myself). Im so scared of another miscarriage tho and at 42 I feel like that would be it for me.

But like you say SO hard to know! Feels like you can't win either way!

What's the hydroxy for?

How did you find coming off the meds whilst preg?

We also have found out my bf has sperm issues and it worries me that that can contribute to mc but there's conflicting views on this (as always!).

xx

Sorry billy it's so hard. My epau won't scan till 7 weeks as u get an unequivocal answer. It's so frustrating

My 3rd miscarriage at 5 weeks showed a sac, wasn't looking good. (I managed to get scanned as the rm nurse felt sorry for me I think). Things looked bad I Prepared myself. But at that stage they can't say it's over. It's too early. So I had a hideous week wait of will it be ok/won't it. Then went at 6.5 weeks there was a heartbeat. Was so confused/shocked and happy then 2 days later it had gone. They told me off at the 5.5 week scan as they can't tell you much and things change a lot then. And they won't say it's a miscarriage if they see something. U have to go back for a repeat scan.

At 7 weeks if u can see a heartbeat then it's good news. Saying that I can't ever wait that long and ended up doing hcg bloods on my 4th mc.

I'm actually having Ivf now due to sperm issues than developed after mc 3. my last mc (no 4) was on tx too....just got to hope next sorry egg combo works out.

Hopefully rosa will come on and give us her happy story too! Glad to hear ur doing well sunny :)

I was very lucky in that I had very little side effects from the medication. This time round I was extremely hungry for quite a few weeks from the steroids but my appetite quickly returned to normal after I came off them. I know not everyone has been as lucky.

Hydroxy is short for hydroxychloroquine, which is another auto immune drug that Dr s uses, he has had quite a bit of success using it - but I'm not sure what determines if you get it or not. When I went for an appt after my mc he suggested it. You have to take it for 6 weeks before you try again so it's in your system.

I waited until 7 1/2 weeks for my first scan and although it was such a long wait, trying is right often if you have an earlier scan it can be inconclusive and you have to go back for a repeat scan anyway. As if turned out I was 5 dats behund where I thought I was so if I had gone earlier I probably would have had to go back for another. The scan fear has never gone away, everything I have a scan of midwife appt where she gets the Doppler out I always get scared!

Trying God that sounds awful! I know what you mean it prob would've just added more stress if I'd known. I decided not to do the hcg for that reason, plus my 3rd mc hcg level was good then I miscarried a few days later so not sure how reliable it is.

Sunny Thanks for the info - I will ask Dr S about Hydroxy.

Is anyone else using Hydroxy? I guess you take it as well as Prednisolone?

Sorry ladies Im prob asking stuff that's already been discussed in this thread!

xx