Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

I'm so pleased for you @myrainbowjourney 🙂 did you see Dr Edge today? When will you trigger? Really good to hear your ovaries have responded well this cycle 🤞 for you.

Hopefully you won't need to do the sperm dna fragmentation test. I still don't think I understand why high dna fragmentation causes miscarriage - if you test the baby and they're chromosomally normal, what is it about the sperm dna fragmentation that causes the loss and how do you tell?

I'm OK thank you, trying not to get too far into my head about things. I'm just scared I'll have another loss again. We were talking last night about embryo banking - dh and I feel very differently about them. I see them as my potential children but dh is more distant from them.
No time restraints really, other than my age. Dr S was saying we should embryo bank before another transfer (hence our chat about embryos) so that's playing on my mind a bit. But we have a top quality embryo in the freezer and I want to give them a chance. But the risk is if it fails or I miscarry again, I'll be 39 before we can do another egg collection. Sorry, just waffling now.

@Sezmarelda1 that's good that your bleeding has eased. I'm sorry that the results haven't given you any answers and that you have to wait so long to discuss them.

@Arwen7 I hope you're feeling OK today, glad the spotting has eased.

@taffeta00 how are you?

❤️

@myrainbowjourney glad you got a good result. I was in today too - it was 3 with 2 of a good size and a smaller one coming on - she said it was as good as we could hope for so I’m just praying/ hoping (for us both). I’ve been off for a few days and stayed with my parents - a break/ the sun definitely helped me not to focus on it. OH and I are also away for 3 days in Hampshire from tomorrow for a much much needed break for both of us. I was rock bottom a week ago after speaking to an Ivf clinic and being told I should’ve gone to them a year ago, despite other clinics saying trying naturally was better for various reasons. I felt so so deflated and fed up of conflicting advice on something so common. After a break away I’m just trying to look forward and be positive, not looking back wishing things had been different for the past 2 years.
@VenusStarr thanks for thinking of me. I hope you can have a rest before May. If we do have to go the IVF route I’d love to quiz you if that’s ok.
Enjoy the sun everyone - the vitamin D will do us good.
Much love

Hi @FullMoon2015. Welcome to the thread, and sorry to hear the journey that's got you here.

I don't think everyone has high NK cells but I don't know for sure - hard to say as everyone here does, I believe.
I remember asking at my first appointment what would happen if I didn't have them and he said he would treat me anyway as he didn't believe that many losses were normal. I think your treatment plan depends on the level and activity of the cells though. Not everyone has to have intralipids for example.

When is your appointment?

@VenusStarr thank you. I'm really pleased but absolutely not getting my hopes up. I know there are no guarantees and that's really hard to deal with when it feels closer than before because of the side they are on.
Yes I saw Dr Edge. I do think she's really lovely.
I know there's nothing they can do, and obviously very happy for them, but a couple of the staff are pregnant and I found my feelings towards it mixed. It's silly because they are allowed to have babies, and I wasn't particularly triggered by it, but it just made me wonder how some people felt seeing that at their appointment. Random musings there 😂

I triggered at the clinic, so we are go go go now. I'm annoyed with myself as I had a couple of glasses of bubbles last night - my mind has sort of switched off a bit from putting all my effort into the process and not living. But now I regret it.

I do hope we don't need it. It's not the initial cost as much as what it means after. I know that if it's high then something needs to be done, but looking at the leaflet, you're looking at potentially over £1k before you even really start.
Interesting point about how it contributes if the baby was chromosomally normal. I can see how it can cause miscarriage otherwise, but you're right that it seems like it can't be the contributor to your losses.
She also wants OH to have a normal nhs sperm analysis, because now we aren't falling pregnant either. Like I said, hopefully won't need them, but the break cycle will be a good opportunity I suppose.

Sorry to be asking silly questions, but what is embryo banking? It's so difficult thinking ahead to the what ifs. I'm the same and just think a positive test is one hurdle. I think we are all well overdue some good news so we should be thinking positive that we will have our time, hopefully very soon.
As they always tell me, you aren't too old at all ❤️
And always waffle here

@taffeta00 ooh we might have been in at the same time. Sounds like a good result for you too. Fingers crossed for us 🤞🏼🤞🏼
Where are you staying in Hampshire? I live in Hampshire.

Hope you all enjoy the sunshine xxx

@FullMoon2015 sorry, I hadn't seen your message last night. I'm sorry you find yourself here. I have overactive nk cells but a normal amount (but my case is quite complex). I do know of someone who didn't have any nk cell issues, he only found pcos. She did have a couple of chemical pregnancies on the plan (no steroids or intralipids) but conceived each time they tried and just had a baby a couple of weeks ago.

@myrainbowjourney please don't feel bad about a couple of drinks, I honestly don't think it would have an impact on anything. Great news that you've triggered :) I've not met Dr Edge yet (although I think she may have been there on Monday).
I meant to mention about the pregnant staff. I was ok too, but my dh was a bit pissed off - he felt like it was insensitive, but I think it was that initial reaction and isn't a personal thing. I've definitely noticed that he's noticing things like that more.
With the dna fragmentation test, part of me was wondering whether to just get dh on the impryl anyway. He's just on wellman conception.

Embryo banking is doing 2/3 rounds of ivf to collect eggs and fertilise them, hopefully grow to day 5 and then freeze them. As my amh is low, we wouldn't expect lots. Some people do pgs test to check for abnormalities but he told us not to do that.

Are you getting your partner's sperm analysis done with them? My dh hasn't done one for years now, but we did it locally and it was £90 for same day results.
🤞 For you for this cycle.

That's great news @taffeta00 have you triggered as well? I'm glad you've had a few days break, it makes such a difference. Absolutely ask questions with ivf, I've only got my own experiences to go on, but if I can help I'll try. Hopefully you won't need to go down that route, but I will say I didn't find it as stressful as ttc naturally (we have been ttc for over 4 years now, so think I got to the point where it was too hard). Good luck for this cycle.

Af is here, I'd had a lot of pain in my luteal phase but it's not too bad now. I am relieved that my flow is good, as I was paranoid after surgery. Not sure if I can see a difference now I'm on sitagliptin.
Definitely feel like metformin is kicking in, felt nauseous this morning and my tummy is still a bit not right. Am only on one tablet a day, will try 2 from next week.

Hoping for some lovely weather again today ☀ xxx

@VenusStarr it's funny isn't it. I just told OH and he had a bigger reaction than me. Definitely not personal and I don't know what I expect them to do - they can't be told not to be - but it's just a tricky one. I think if I was in there early pregnancy for scans, it wouldn't be easy having someone pregnant there. But that feels like a pipe dream at the moment.

No we won't have the analysis done there, they don't actually do it. So we either go to the GP or another provider like you've used. I contacted my GP as I also need my bloods again, so if they are being helpful I'll ask if they'll do it.

OH takes impryl, we decided to just add it when we started. It's difficult to know what to do for the best. I think I said the other day, I do think if someone else told him to do XYZ then he would. But I don't know what he could change really, he's not angelic but he's also not really doing anything that I think would drastically change anything. But who knows.

Interesting about the banking. So would you have to pay for 3 rounds of ivf upfront?

What is the sitagliptin meant to do? And the metformin? xxx

@myrainbowjourney you're right about being there for early scans, I'd find that really hard. I did meet a new midwife on Monday. It's really tricky isn't it.

Definitely see if your GP is open to doing it. At the time our area was running really behind (pre-covid as well) and it was before we'd ever had a pregnancy so needed the results for a referral to infertilty.

I really do think our issues are down to me. Like you said, the extra cost is a lot. We'd have to pay upfront for the ivf cycles I think. Plus meds on top, I actually don't think we have the money, so would probably need a loan.

The sitagliptin is because when I had a biopsy with the implantation clinic last year, my uterine nk cells were very low. At the time they said it's a fluke, carry on. But then we lost the 2 pregnancies. So while we were waiting for the cytogenetics of my last loss, I contacted them again and it's professor Brosens who said he thought it would be chromosomally normal because low uterine nk cells is to do with poor stem cells. So sitagliptin is supposed to regenerate your stem cells. I'm doing it for 3 months. Dr S doesn't rate it at all.

The metformin is usually for pcos or diabetes but I have neither. He said he'd been to a conference last week and some emerging research was discussed. I have adenomyosis and I asked if it was a factor in this loss. Adenomyosis is a sister disease to endometriosis (I don't have endo), but down regulation - putting you into menopause before a transfer is often used. But he said this new research with metformin showed that it can reduce the bulkiness of the uterus, so he preferred that as a treatment. I think it balances hormones. I definitely think with my 2 chemical pregnancies it was a hormone issue. So we felt on the basis of trying 2 new drugs it gives us a bit of hope for the transfer (I'll stop sitagliptin just before I start the transfer cycle). If it doesn't work or I miscarry again (I really hope not, think I'd cope with a bfn) we'll throw everything at it and use the gcsf. That feels like a last resort treatment for us. Xx

Forgot to say, the stem cell theory makes a lit of sense to me. Professor Brosens said that essentially the uterus lining stops working and starts breaking down with low stem cells. 4 of my losses have been in week 6 but my body holds onto the pregnancy until about 9 weeks. It feels like a big coincidence to me and too much not to give it a try. I think I need that peace of mind to know we tried it, if that makes sense. There's only been small trials in it, but for ones who have had it and has losses, they've been chromosomal abnormalities (but it's tiny cohorts, so bigger studies are needed). Xx

@VenusStarr I think the issue is with me too. I sort of can't believe I'd have these issues and then he would have sperm issues too. Would seem too unfair, but probably worth ruling it out if we don't get anywhere.

So interesting about the meds, especially the theory behind the uterine nk cells. Did Dr S say why he didn't rate it?

I know what you mean about saying you've tried it. You'd rather do that than wonder if you have missed something. Sort of my mentality on the sperm tests if we don't get our chance soon xxx

@FullMoon2015 welcome! I cannot say whether everyone needs NKc treatment but I can tell you that I have normal number of NK cells but these few ones are causing havoc (they are overreacting). My previous doctor (after 1st and second miscarriage) did the numbers, they were within limits so he did not think I need anything more than perhaps a small dose of pred from positive pregnancy test. Which I did but ended up in another mc. Dr S run some sort of other test that show that they are normal level but way too happy to cause havoc when pregnant. I was put on a much higher dose of pred along with progesterone and aspirin from ovulation along with intralipids on positive pregnancy test and ended up in a live pregnancy.

Let us know how you are doing! I am seeing him on Monday to get my blood results from this round. 🤓

Please can someone relax my mind. I'm so annoyed with OH. He went out last night and got really drunk. Our days to have sex from the clinic were yesterday and today. We did Friday, Sat morning and will hopefully do later but I feel we have missed it for not doing earlier

Feel like we have missed a chance and I'm so peed off xxx

Thanks @myrainbowjourney. I'm booked in for end of April which I was initially gutted about as I wanted to get the ball rolling asap but now its almost April I feel really anxious and panicky all of a sudden

Thanks @VenusStarr. We are also a complex case as we have severe male factor but I have also developed autoimmune symptoms since the birth of my son. My GP couldn't find a cause on Nhs immune tests so I'm thinking Nk cells must be the missing link. The thing that's eating me up inside is that I could take all these immune meds but the severe male factor could ultimately be the cause of the chemicals and failures anyway.

Thanks @MrsMargot. It's really reassuring to hear you've had a live pregnancy on his plan already. Some immune doctors prefer to run Chicago tests which are sent to a lab in America whereas Dr Shehata uses a lab in the UK - both tests look at Nks but I think they look at different sub categories which might explain the discrepancy in opinions. I'm actually torn about this myself because Argc use Chicago tests and are renown for their high success rates but then Dr Shehata also seems to have great success on the Pred threads. Good luck with your results today btw!

Have any of you ladies had any experience of Dr Gorgy who is also an immune specialist in London? He uses Pred, Hydroxy and Intralipids like Shehata but also offers other testing such as hidden infections in menstrual blood amongst other things. I've heard he's flexible with doing intralipids elsewhere too (but dont quote me on that). Xxx

Welcome @FullMoon2015 and sorry to hear about your losses. I had 3 consecutive mc last year and went directly to Dr S. He found normal amount of NK cells however they overreact when pregnant. It was only slightly high but he put me on steroids and intralipids so very much like @MrsMargot. I asked if I needed the intralipids as it was a borderline result and he mentioned that it would be better to throw more into it rather than a trial and error approach which I was happy with.

@myrainbowjourney sorry to hear your OH made you upset. It’s hard when you feel like you are investing so much of your energy and time planning etc and they are not completely aware of it. However you managed it two days in a row and then yesterday too perhaps? I think you have tried your best and hope you are feeling better - now fingers crossed it works.

My brown discharge it’s on/off. It will stop for a few hours/a day and then come back. It’s a very small amount and only when wiping but I do go from feeling hopeful to thinking the worst - multiple times a day which is exhausting me! But I am keeping positive and will wait until the scan on Fri with Dr Edge. I’m working the next few days so hopefully it will go by quickly. Thanks everyone for asking xx

Welcome @FullMoon2015, but sorry you find yourself here.

I know how it feels to think you've missed a chance around ovulation time @myrainbowjourney, I've been there too, more than once. You can't change the past though so please try not to get worked up over it. Easier said than done I know. It sounds like you managed twice with good timing so there is definitely still hope for this month!

Good luck for your scan on Friday @Arwen7. I have no idea how you manage working as a midwife, I find it so hard seeing pregnant women and tiny babies when I so desperately want that for myself, I think I'd burst with all sorts of emotions if I had to spend lots of time in that kind of environment. Well done for keeping it up and staying so positive x

@Sezmarelda1 thank you. I know, everyone says the same. Never thought I would be in this position when I qualified. I think in my mind I take it as a job and don’t even think about it, I see it every day so it’s like I have become desensitised in a way so I do not find it hard luckily - the only times I struggled have been during the first month or so after each miscarriage when I really did not want anything to do with bumps or babies! I also love my job most of the time so that helps. However oddly enough I do get triggered sometimes when I see pregnant women outside of the maternity ward (I guess my midwife hat is not on then) and definitely with friends/family. Xx

@FullMoon2015 the time will go really quickly. I was the same with my first appointment, felt like so long to wait but it was actually a nice mental break from thinking about it.

Thanks @Arwen7. It's exactly that - I feel like I'm doing everything. All the sacrifices, all the scans and meds. All I need from him is him to be there on the days we need and he can't manage it. We did manage both days the clinic said, and the day before. I just felt like it should be earlier in the day because of the trigger timing, but the clinic don't actually specify. Can only see now.

How are you doing today? Friday is coming round quickly.

@Sezmarelda1 it's so frustrating isn't it. Although I also know it only takes the once, we've done many days in a row and no luck so maybe this will end up positive.

I'm being so forgetful with the meds this time round. Feel like I'm slightly detached which I quite like. It's not my entire thought process.

Hope everyone is doing ok xxx

Oh my Gosh @Arwen7. Hats off to you. I really do not know how you do it given the personal circumstances I think it is one of the most difficult jobs to have. Sending you a big big hug ❤️❤️❤️

Ladies, I have a question. Those of you that are on pred and progesterone after ovulation, do you have dizziness? Is it normal? I would think I would remember but I really cannot remember what happened with my pregnancy. I have spots of dizziness throughout the day and I am not sure whether it is normal reaction to the drugs or I should call the clinic just in case it is anything weird. I am having some really tough time at work and I do not sleep well. Is it that I am knackered or the pred and progesterone are causing it. I am just looking for some reassurance.

Hi everyone. Just checking in as I haven’t been on here in a while. How is everyone doing?

We didn’t go to NYC in the end as both of our cars broke down in the same week 🙈 but I am really enjoying having a break. It’s doing me the world of good even if I do get pangs of “what if this had been THE month?”

Hello, I hope you are all doing okay.
Yesterday a Dr S was on this really interesting podcast all about miscarriage. I particularly like how he explains how his tests and treatments differed from the other clinics talking about Chicago and Quenby. @FullMoon2015 might be of interest.
podcasts.apple.com/gb/podcast/the-fertility-method-connecting-you-with/id1613615538?i=1000555426953

Hi everyone,
Hope you are all doing as okay as possible
Long time lurker on this thread so hope I’m not being too annoying jumping on now🙈
Just checking in as I have been to see Dr Shehata now for all his nkc and standard tests and I’m wondering has anyone been put on Humira too?
It appears I don’t have a particularly high number of nkc or particularly overactive but they mentioned that at implantation there is a high production of TNF which could impact on implantation and early miscarriages (I’ve had 4). Has anyone had anything similar?
Plan is to go on Humira and then start the prednisone and Intralipids if TNF is reduced…..
Any similar stories? I’m freaking out a bit to be honest x

Hi Ladies, hope it is ok for me to join this discussion. Sending love to all of you going through this difficult journey.

I had a missed miscarraige at 10 weeks in November resulting in a D&C. I then had an ectopic pregnancy 8 weeks later and emergency surgery to remove my right tube. The whole experience has been traumatic. At first i thought the missed miscarriage after hearing a healthy heartbeat at 8.5 weeks was the worst, cruelest thing to ever happen to me but the level of grief after the ectopic surgery was horrific. I guess i hadnt yet dealt with the shock of the MMC and then had the ectopic to deal with too. I've been so worried about having only one tube left and i only seem to ovulate on the opposite side based on ovu pain. I also had a cyst on my left ovary (the side of no ovu) for around 3 years, 4cm. The surgeon drained it for me during surgery.

I decided to do my own research because i refused to believe or have faith in the "its just bad luck, try again" NHS, especially when i was sent home numerous times with my ectopic and even told it was trapped wind.

I found Dr Shehata and got my results yesterday. I wasnt expecting these results at all though as i feel like a perfectly healthy person and i know it sounds silly but i just assumed i would have something but not this...
I have a slightly raised thyroid no biggie really but on a very small dose of thyroxine now. The main finding was normal amount of NK cells but very high activity so i have been put on the complex plan. I dont really understand what this means and i do feel it is all a little rushed at the appointment. I get the impression Dr S is so busy i get scared to ask too many questions and end up being ushered out the door, it feels like that anyway. Hoping someone here can shed some light on it for me. I am now on the prednisolone which i am really worried about with side effects. On a whole host of other drugs too. The steroid doseage seems high - 25mg but 5 tablets all at once after breakfast so 125mg altogether. Is that normal?

Im also on the super ovulation programme due to my one tube and i had a check on remaining tube yesterday which is patent and clear of blockages (btw OUCH that is a painful test!!) So fingers crossed i manage to ovulate on my left side where the tube is! Last visit he thought my left ovarian cyst had returned but now he thinks its a dominant follicle so im praying thats the case as conceiving has been immediate for me both times but obviously its gone wrong and ended in x2 surgeries.

Grateful for any advice you can all give. Im so nervous about the medication, it seems alot and i know side effects will kick in. Not sure whether to feel hopeful or even more defeated that they have found this.

Thank you x

@Tgrf55 I'm so sorry for your losses. Well done for finding Dr S and getting your treatment plan. I would recommend you listen to this podcast as he explains everything so well podcasts.apple.com/gb/podcast/the-fertility-method-connecting-you-with/id1613615538?i=1000555426953
Prednisolone I would say don't be too worried about that, it sounds scary at first but loads of us have been taking that amount for years whists TTC now and personally I have no symptoms from it at all. It works effectively for a lot of women so a great thing to try.
I'm on his complex plan with almost every drug he has to offer at the highest dosage, including IVF and literally don't have any negative symptoms apart from a bruised tummy from all the jabs. Any other specific questions let us know. Stay strong xxx

@whatsgoingon22 don't freak out. It sounds like you have a good plan of action now. Humeria is the only drug I haven't tried yet. Did you manage to get your prescription as it can be expensive but apparently there's a place in Wimbledon's that has it for £300 a jab. Intralipids should help, some women take an iPad with them and use the hour to enjoy a good film or read a book. I always end up working though! Also would recommend the podcast podcasts.apple.com/gb/podcast/the-fertility-method-connecting-you-with/id1613615538?i=1000555426953 Any questions let me know xx

@StillTrying10000 thanks for coming back to me! I hope you're managing ok on all the drugs + IVF. I was actually thinking yesterday how hard it would be having IVF drugs on top of the complex plan so you are a warrior!!

The steroids do sound scary! The main concern is the moon face and mood swings. I really would prefer not to have a moon face and weight gain on my upper back lol. Not sure if it can be prevented with exercise. It just sounds very daunting. Ive also read it can affect the babies growth but assuming they would never prescribe it if that was a likely scenario.

I think i need to spend today getting my head around it all. Feeling very overwhelmed and sad that its come to this but also trying to be positive that ive found a team who can help me.

I will listen to the podcast now, thank you for sending the link xxx

@Tgrf55 yes it's so daunting. The moon face is shit, I forget about that as it's just my normal face now (ha!) after a year on pred, I guess once you've been to hell with the losses, how you look just stops mattering. It's also scary about how it can impact the baby but it's only until 12 weeks and I guess if it's our only option to have a baby it's worth the risk and lots of monitoring will help. xxx

@StillTrying10000 haha well at least its something you get used to :) I'm not overly concerned about the effects of taking the steroids for 10 days its more the 12 weeks once pregnant (IF and hopefully get pregnant!) Are you also only taking them from 10 days from ovulation? I guess maybe it's different for you now with IVF? Just listening to the podcast now, i wish Dr S spoke to me for this long when i have been. He seems lovely but i guess where he is so busy the time with him is very limited. xxx