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!

Wow Yomping, I can't believe you're almost 12 weeks. Amazing. It seems like that went by so fast (although I'm sure it felt like a lifetime to you). When is your 12 weeks scan?
MattsMamma how far along are you now? Do you have a scan coming up?
I'm ok. Should be ovulating in about a week so just kinda waiting foe that. I have an apt with Dr S on Tues tch Eco blood pressure and get prescription for pred. This is the longest it's taking me to get pregnant (which in actuality hasn't been long at all but just annoying now that I have a treatment plan in place I'm not getting pregnant ) and I'm hoping pred isn't messing this up for me.

PJ12 Thank you for asking . I have a scan booked for 2 weeks time at which stage I would have been around 7 weeks. I have been really good at keeping away from POAS after getting five BFP's which got stronger with frer and a 1-2 weeks with a digital clear blue. I have left them well alone since last Friday. However this evening I decided to do a frer and the line has all but disappeared so sadly it looks like a chemical/very early loss . I'm annoyed with myself for even daring to think it could work out but wish I'd waited till Monday as I could have had ignorance is bliss for a bit longer . Anyway looks like it's over for me yet again. Due more to my age probably more than anything else I think. Gutted beyond belief ......

If your concerned about the pred messing with your ovulation mention it to dr s? Hopefully it isn't but a lot of women do take it from BFP. I hope this is your lucky month - good luck .xx

Hello ladies :)

I haven't been on here for a few months now...thought I'd pop by to give an update and wish everyone well.

I've decided that I'm no longer going to pursue Mr S's programme. Thought about it long and hard and my mind is made up. I'm so happy for those who it worked for but the side effects for me, in the end, just can't be dealt with. I tapered off the prednisolone after the miscarriage in early August. I still have horrid acne and palpitations, both of which I struggle to deal with. I have heard nothing from the clinic at all by way of a follow up...which maybe with hindsight I was naive to think that I would (!)
Thankfully the severe shakes have gone. I'm guessing the prednisolone just wasn't right for me and I dare not try it again.

I don't mean to scare anyone off it, there are so many happy success stories on this board. But I wanted to just give my experience as someone who is going to walk away and in a different direction.

Sending everyone much love, those who have their bundles of joy and those who will get them soon xx

I'm so sorry to hear that it looks like an early miscarriage / chemical MatsMamma. I hope you feel better soon. I know how shit that feels.

KarryK I can understand why you have decided to stop treatment, I think about it quite often! Let us know if you find another way that works for you.

Yompingjo, you are giving me hope that this might work for me too. I am so pleased it is all going well so far.

Dr. S has added hyroxycloraquine to my plan to see if that helps avoid further chemical pregnancies and, as I have ovulated early, one egg only despite superovulation and my womb lining is too thin this month (my body is doing strange things) I'll be taking progynova to improve that moving forward. It will be my 5th month of superovulation (7th month of pred) and I am struggling to stay positive now...

Thank you BACKTO x. I feel particularly shitty this morning. AF came yesterday evening and in full flow today. Surrounded by pregnant mums on the school helped greatly not

I know how you feel - it gets so demoralising and the whole process seems at times to be one massive head fuck! All the effort we have to put into this with no guarantees - a big part of me has this need to carry on and until that has been totally drained from me I feel that is then I will give up and only then. Wishing you much luck in your next cycle BACKTO xx. Can I just ask why hydroxy has been prescribed? He prescribed this for me due to sporadic breakouts of itching and urticaria but I stopped taking it? How can it help with chemicals?

My understanding is that it's to add another layer of immune suppression mattsmamma as it has those properties ... It's given me a bit of hope for next cycle if nothing else ...

I see - I'm wk seeing now if I should have continued with it with 3 chemicals under my belt

I will discuss with him at my next appt. fingers crossed for you xx

Apologies for all the typos!! Read back my posts - terrible

I have a dilemma. On way to Epsom for 12 week screening scan and next intralipids. Had a terrible night, only 2 hours sleep and spent the rest of it feeling nauseous and threw up twice. Last time I had intralipids the midwife checked that I hadn't had any d or v recently, so I suspect that it means that they won't want to give me the intralipids if I tell them I have been sick. But if they don't do them today, I need a whole other day out of school and there simply isn't another day that wouldn't be a nightmare to have off, because I'm acting head for a month from Friday, I'm delivering training tomorrow, we have a mock inspection on Friday and a review day on Monday, and I'd have to have the treatment in the next few days.

I've no idea what caused the vomiting, could be steroids withdrawal because I'm tapering them now, could be a bug that DD has had. I feel ok now, haven't thrown up since 4am and am keeping bland food down. I've googled for ages and cannot find a single thing about not having intralipids treatment after illness, it seems it is just fat and oil and doesn't usually have side effects, so I don't know why they might not give it to me after I've been sick.

So... do I just lie when they ask me the question, because there is literally no other day I can have the treatment? Or be honest and risk having to reschedule, which is gong to be a real headache?

Hi YompingJo, I've not got to the stage of having intralipids yet so don't know how all of that works. I know how hard it is to juggle life to get to the appointments, and it sounds like you have a tough week ahead of you.

I would consider though that lots of women must have morning sickness. How does the clinic cope with them? Do they not have intralipids at all if they are sick every day? I imagine they must find a way to treat them? i think its possible that they will still be able to treat you - fingers crossed!

Also remember that you are pregnant, with a hard won pregnancy and it's time to put yourself first. What if you came down with flu, or broke your leg - work would have to wait. It would be inconvenient but life would still go on. The clinic might have a good reason for asking those questions so it might be worth trusting them. Fight your corner if you decide to tell them about the sickness and they try to reschedule the intralipids without a good reason though.

I can't tell you what to do either way but I wanted to reply somehow, not sure if it's helpful. Wishing you the best of luck with your scan and good luck for your week ahead too! Let us know how you get on xx

I hope your scan went well Yompingjo and you managed to resolve your dilemma.

I'm not sure if anyone has seen this article but thought I would share in case anyone is interested. Hope the link works!

www.theguardian.com/society/2016/nov/12/can-mayonnaise-cure-infertility?utm_source=FREE+Fertility+Plan&utm_campaign=10704e38a8-Come+and+say+hello+at+The+Fertility+Show&utm_medium=email&utm_term=0_6fd0333040-10704e38a8-314325845&goal=0_6fd0333040-10704e38a8-314325845&mc_cid=10704e38a8&mc_eid=bcee8bd307

backtotheplanet thank you. I was honest. They wouldn't give me intralipids, they thought I was too ill. Turned out I was too ill to argue! Spent most of my day in tears on trains .

Scan was amazing, he took 45 mins and checked every single thing. All good. And I got 5 days of pregnancy for free! And I had Harmony dna blood test at local place the week before because sod it, I just want to know with as much accuracy as possible what the risks are. All came back low risk. And it's a boy! Which I feel totally weird about. I have a loft full of girls' clothes I wanted to see on my next baby. I'm an idiot.

YompingJo many congratulations, such wonderful news, very happy for you and hope everything keeps going well. After long discussion with my other half about taking the tests and Dr Shehata's advise I did it. Got my results yesterday and I am to follow the Complex NK Cell treatment programme. I am kind of excited but at the same time a little scare of what could happen. I cant wait to start taking my tablets though. I wanted to ask actually, Dr's notes say to start taking my Prednisolone daily "from the time of my ovulation" and continue for 10 days. I could be really stupid here but does it mean from my "ovulation day"? and 9 days after ( although it would be a guess to get my actual ovulation day) or from the 12 day of my last period and after...I asked so many questions and after receiving so much info I totally forgot to clarify this one. If anyone can advise I will appreciate it. My last period started on the 10th of November and it finished on the 16th... so not sure if I should start now. Yeah, I am kicking myself for not asking about this.

Hi Mochita,
I used the internet cheap ovulation sticks and would start my pred the day following the positive. Hope that helps. And good luck!

mochita if you pm me your address I'll send you my remaining stash of ovulatione sticks, if you like? I was wondering what to do with them. They will tell you the day you ovulate, I then took the pred from the next day (as I was scared and needed a day to build up to it!)

Thank you Seekingmiracles, I always record my periods etc with an app but I want my treatment to work so badly that I am afraid of making silly mistakes. YompingJo I am messaging you and thanks. I am so scared of taking this meds. Side effects but what makes me more nervous and really really afraid is any harm to the baby should I get pregnant. But I am trying to think positive and hope that everything will be fine. Not sure how long it will take me to get pregnant, but I am ever so hopeful. Are you feeling better now?

The risk to the baby is Soooooo small mochita, main risk is cleft lip/palate. I asked mr s if he'd ever seen it in his patients and he said no. Try not to worry about all that for now, concentrate on you and ttc x

hello
can I check what advice Dr S gives with regards to aspirin pls?
I have high NK cells and it looks like he suggests to stop aspirin at 20 weeks. I have not gone back to see him as it's far for me.
Is it common practice to stop? I am nervous as do not want another m/c!
Thanks.....

carryon - I'm on the complex treatment and on my sheet it says to stop aspirin at 20 weeks unless instructed otherwise.
Yomping many congratulations. You must be so happy to be out of the first trimester. Hopefully you can relax a little bit now
I went to see Dr S a couple of weeks ago to check my BP and get more pred. We talked a bit more about my treatment. I have high NK cells but my issue is my TNF alpha which is through the roof (at 58). He actually said it is one of the highest ones he's ever seen . I'm a bit of an enigma to hime as he told me that high TNF alpha is normally associated with issues with implantation/getting pregnant but I have no issues getting pregnant and usually get to about 7/8 weeks. He suggested Humira again but I declined as I just don't feel comfortable taking it. I've read most people either have a reaction to it or a flare up before it actually comes down. My husband is not a big believer in immunes and I don't think he would be happy for me to have the Humira (cost also comes in to play). I asked to Dr S about hydroxy as I've read that a lot of people were about to bring down their TNF alpha with that (and it's so much cheaper) but he didn't agree. We agreed to retest my cytokines to see if the steroids have made any difference (I doubt they have as I've only been on them for 2 months). I should be getting my results any day now. I was about to send an email to do the hidden infections test (as high TNF alpha could be associated with your body fighting off an infection although I've read that Dr S doesn't believe in that) but decided to do a test this morning as it's my last day on red. Low and behold - a BFP. Very very faint as I'm only 11DPO (I've never tested this early). I'm absolutely terrified as I don't see how this pregnancy can make it with my sky high TNF alpha . I'm actually annoyed now that I had decided to retest my cytokines as I'm sure they will still come by very high and will just stress me out even more.
Does anyone know when I should book the intralipids? Do I wait for the test to get darker in case in turns out to be a chemical since I've tested so early?

Hi just found this thread and I guess I'm one of you! My history is 2 early mc and currently 4 and a bit weeks with 3rd preg but found out I have autoimmune problems so on a concoction of drugs this time. This pregnancy is looking like it's going to be another failed one as test line has practically disappeared but I've not yet bled. Feeling like I've been hit by a bus not sure if it's the drugs or the pregnancy. I'm on pred, progesterone, clexane, asprin, thyroxine.

For those of you who have had an early mc on the anti clotting drugs was the bleed much worse? I think the only reason I've not bled is the progesterone tricking my body into thinking I'm pregnant.

PJ12 ooh whispering congrats xx. I know how you feel - that positive test brings a whole new set of emotions to the surface and it's scary! Maybe test again tomorrow morning and see if the line is darker? I would email Cheryl - Dr S's PA and ask for her advice? I had a friend with your problem and she was fine - try and stay positive (so difficult I know!!). Fingers crossed for you ! X

Welcome Jaffa - the only anti clotting
Drugs I took were aspirin and it didn't make any difference to bleeding. maybe one of the other ladies can help who have taken other anti clotting drugs. Sadly the progesterone can stop you bleeding. I had a chemical just recently and 2 days after stopping the cyclogest bleeding started. I hope it's not a chemical for you - fingers crossed xx

Thanks MattsMamma. How are you getting on?
I've decided to bite the bullet and have my intralipids tomorrow. I spoke to Maidread and she said it has to be either tomorrow or next week. I don't want to leave that late, I'm gonna try and give it my all with this treatment. I'm going to test one more time this weekend to make sure that the line is dark and then I'm going to leave it. I don't want to torture myself, whatever is going to happen will happen. There is nothing I can do about it. I should be about 8/9 weeks at Christmas time (that when things always go wrong for me) so this will either be the best Christmas ever or the worst Christmas ever.

jaffacake16 I have also heard that the progesterone can stop you from bleeding. Not sure about the other drugs.

Thanks guys, scan will confirm tomorrow but pretty sure it's a no go this time.

Funny how they don't tell us this side of the story in sex education as far as I was concerned you had sex and then had a baby....how naieve was I!

Tentative congrats PJ. I had my first intralipids at 6-7weeks so can't help there. But sounds like getting them asap is the right idea. Fingers crossed for you.

Jaffa, I was on aspirin and fragmin - my miscarriage bleeds were ever any heavier when I was on the drugs than when I wasn't x