Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
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@Meg310532 thanks for the info on the superovulation, really helpful. Can I ask if they give you specific instructions on dtd, number of days etc? It would be helpful to know so I can plan ahead, especially if we need to follow a specific schedule. Best of luck for this cycle! Xx

@Jecca88 ahhh so so happy for you!! May it continue this well until the end ❤️ sorry to hear about your friend, it’s really hard especially if she’s never had complications before. All of it is incredibly hard. Hope you’re feeling a bit more at ease and hopeful now xx

@Newbeginnings22023 they told me to dtd on Monday & weds & Thursday I think it was … and I took the trigger shot on weds :)) I need to ask them actualy if the advise against doing it more than what they say to do it. But everything I read online says the more the better !? Xxx

I just gave his details for Epsom to my GP and they referred me. Took 4 months for my first appointment. He did lots of standard tests plus thyroid stuff and NK cells. I believe some treatments are not available on the NHS but he will prescribe steroids.

@Meg310532 so next is 12 week intralipid on the 16th and then Nuchal scan on the 22nd Jan - which is bloods and scan for £360. I think that's where they assess chromosome stuff.

Thanks @Newbeginnings22023 trying to stay positive - this is the furthest we have ever got, still in disbelief.

@Notsure31 I also did the same - and asked my GP for a referral - mine took 9 months, so i actually just went to his private clinic as i was impatient. I know he does all the normal tests he does privately and also can prescribe steroids and hydroxychoroquine. But he doesn't give you intralipids or other meds like he does privately.

@Jecca88 thanks for this, DP is quite hesistant to go private even though we would have the money, he thinks private clinics are money grabbing, I do keep trying to explain that the NHS doesn’t offer everything that’s got an evidence base regarding fertility and recurrent miscarriage. Not really sure how else I can convince him! 9 months seems like such a long time though.

@Notsure31 i think it could be quicker - @recurrentmis said hers other took 4 months.

I just had a look at how much i have spent privately and it comes to just over £12K so far, thats a year and half with the private clinic, tests, treatments, three pregnancies (One currently 10 1/2 weeks) but of course everyone is different. It is a lot, but i know others have spent far more and seems so unfair we have to pay, but i know Prof Shahata had tried me on on all the more affordable meds first, so he is conscious of that. I do blood tests with GP which keeps costs down etc and any surgerys or D &Cs i have had with NHS.

I would say request a referral with GP and maybe wait it out a couple of months and see where you are on the waiting list.

@Meg310532 thanks for letting me know :) it’s not as intense as I feared. Our schedules typically don’t allow for lots of opportunities, but this feels doable! I’ve read that every other day is better when the sperm isn’t the greatest quality, which is the case for us xx

@Notsure31 sorry I can’t help you there as I went straight to the private route - time wasn’t on my side! Hope your wait doesn’t last long xx

@Jecca88 you've got this xx

Thanks for all the replies on this, just also wondered if dna fragmentation test is worth doing if anyone has insight on this? DP did a basic sperm analysis which came back fine, unfortunately problem isn’t getting pregnant it’s recurrent miscarriage. I’m questioning if dna fragmentation test is worth it, given that one of the best known cures is increasing antioxidant intake and good quality vitamins/lifestyle which can just be done anyway?

Also could be a long shot but does anyone have the email address for the recurrent miscarriage clinic at Epsom and St Helier which Dr Shehata works at?

@Jecca88 ahh okay all sounds good doesn’t it !! I have read online on other people’s reviews on the CRP website that Dr Shehata is so confident once he gets babies to 10 weeks ! Was it you that said that the immune side of things is only an issue up to ten weeks ? Are you feeling okay? I’m worrying this month that I have Dtd at the wrong time. I think Dr silva said to me to Dtd the day of the scan then the day of ovulation & then the day after ! I’m worrying I did it too much before ovulation and then I did it at like hour 40 after the trigger shot: but we shall see xx

Hey @Meg310532 yes well DR Silva Edge said that we are out the danger zone for a immune related miscarriage. But obviously got some many other milestones to cross. I am hoping as I have never had any chromosomal issues with my previous miscarriages that they have found i am low risk, but would be great to rule it out. 11 weeks today.
I always think that doing the deed before ovulation is better. Its hard not to stress, but keeping literally everything crossed for you. When do you do your first preg test?

Thanks hun @Jecca88 i hate the wait !! One week today and I can test. She said that I could get a faint positive from the trigger injection still though so to be prepared for that… and if it’s really faint I just have to re test in two days time.
it’s amazing that you are past the immune problem stage but totally get that you won’t allow yourself to get too excited yet due to the trauma of everything you have been through. So shit isn’t it that the excitement is just stolen from us. Xxx

Hi all and a belated Hapoy New Year, well, at least I am praying it will be happier than tge last 14 months have been!!
@Jecca88 So pleased everything is going well. Such lovely news.
I am awaiting a new BFP, cant believe it will be my forth when I get one and still no baby. Equally, I am terrified that tge steroids on their own (well, actually with lda and cyclogest too) wont be enough. Just wish I wasnt allergic to the intralipid ingredients.
All that said, I found out before Christmas that I have yet more allergies, the biggest one being cows milk so I am hoping the fact that I have now cut this out of my diet as well as the other bits and pieces will help my body to be less reactive.

Because we are quite lucky and have a reasonable natural conception record (not brilliant but definitely reasonable) we are still going for natural conception and medication from first signs of a positive test.mit is costing a fortune in HCG tests because he said to test from 9 dpo. :).
Anyway, he did say that if I had not naturally conceived again within around 3 cycles to call and he would give me an injection of something. No idea what it was called or what it is meant to do. Do you think this would be what others have referred to as a trigger shot? If so, how does this work? I already ovulate regularly.

Hello ladies, I'm with Dr Shehata currently 6dpo into my third cycle and I all the questions I should have asked when I got my plan are creeping in, I think where I'm now explaining to friends and family what we're doing and I have few answers, just questions. Is Lovenox ever prescribed for NK cells or ANA do you know? (mine's only 1:80) Or maybe intralipids, Pred and aspirin serve the same purpose?

@Taurus26 I am firstly going to say that I dont actually know the answer to your question and it may well be that someone on this thread does. That said, I am not sure why Lovenox might be prescribed for NK cells or ANA as it is a blood thinner I believe and I'm not sure whether NK cells has much to do with thicker blood, although, as I say, I am no expert so there are some who might say I shouldn't comment at all. Equally, I am not sure what ANA has to do with thick blood either, but...
I have high NK cells and have been prescribed steroids from my next positive test. I was supposed to have intralipids too but I'm allergic to them. After my MMC in 2023 blood tests showed i had an ANA at 1:80 like yours and it appeared to be temporary as it was negative three months later. My research has found a couple of articles where experts mention that a positive ANA after miscarriage is a sign of immune attack on the embryo so the high NK cell thing makes sense. If you have recently had a loss this may be why you have a low positive ANA.
Overall, I am not sure whether Lovenox treats high NK cells and ANA positive is, as you likely know, a result of various circumstances or a positive indicator of other possible health issues but not always so u less you know the reason for the positive ANA it is difficult to know why Lovenox is one of your medications.
I do think that there will be a strong reason why Dr S has prescribed this for you. Maybe just ask him what the purpose is in your case.
Not sure if Lovenox and aspirin would be prescribed together as they are both blood thinners but I obviously dont know. Pred, being a steroid would be prescribed to help lower the NK cells and calm your immune system so an entirely different purpose to Lovenox.

Hello lovely ladies it’s been a while since I’ve posted but have been reading @Jecca88 ao glad things are going so well ❤️. I popped on to give an update from me. So after my 10 week mc I had an mva on 11th December after sooo much hassle I won’t even go into with the nhs I had a hysteroscopy last week where they could still see some retained products as I’ve never stopped bleeding. My period has since started so I am hoping and praying the retained products come out with this as the nhs just does not want to remove them but they aren’t removing themselves and literally that’s where I am. I was literally scanned before Xmas told I had product and that they were going to operate on me that day they had a bed ready and I hadn’t eaten so all was go. From me leaving epu entering the ward they changed their mind to apparently it was me saying I wanted operating on which I absolutely did not and that they would leave me 6/8 weeks and if I was still bleeding they’d do a hysteroscopy. I was so confused by all this I went to my gp he was as confused and disgusted as me so wrote a stern letter and strangely enough they saw me In a few
days. They also filled in my cytogenetic testing of the miscarriage wrong so they were almost destroyed without giving me the info thank fully someone in their lab kindly kept some of the dna for us so the hospital could sort the mistake out and we got our result which was no genetic issue.
my appt with Tommys was today after listening to all our info the dr has told me he is pretty certain my miscarriages are down to egg quality and he literally said there is pretty much no hope I will have a baby with my own eggs.
so where I am is I am 41 and a half today so rapidly running out of time, I still have retained products, I’ve had 4 mcs, a blighted ovum, 15 week loss ( all genetics fine), a chemical, a 10 week loss on all dr shehatas meds/protocal all genetics came back ok again and being told by Tommys I have no chance of a baby with my own eggs. I have 2 rounds of ivf left that are already paid for, my ivf clinic do all the meds the same as dr shehatas clinic except intralipids and hydroxy. So far I’ve spent 13 thousand with dr shehatas clinic im noit sure j can risk spending 1000s more and have another loss. Sorry it’s all a bit doom and gloom I’m actually doing ok considering the only thing I’m desperate for is to be rid of the retained products as I’m sick of bleeding. Thanks so much for reading just thought I’d update as it’s been a while since I posted xxx

OMG Gizmo1983 - Lovely to hear from you but I'm so sorry! You have had one hell of a time havent you and is still ongoing. This is the most shit process and I'm so sorry you have had all this. It really upsets me that you and others too have spent so much money and not got what you so much wanted. Aside from the physical pain of losses there is the psychological pain involved with trying to come to terms with everything and trying to get ones head round what the best way forward is. It's just so awful!! Makes me really angry. It seems to be the only area of medicine, apart from plastic surgery where people are expected to self fund.
I am feeling it for you and sending you hugs x

@Gizmo1983 I am so sorry to hear you are having the hardest time hun! Got it’s SO unfair it really is. My heart really does go out to you. Glad you are doing okay considering everything. It’s sooo hard to know exactly when to have a cut off with money isn’t it, especially when it’s something you want so much. Has Dr Shehata given you his advice on it all and where he thinks he wants to go with it all next ? Xxx

@Gizmo1983 I'm so sorry reading this, it's just so shit and so distressing and it seems so unfair when you have to fight not only for your baby but also just general elements of the process. It's exhausting and so sending you strength x

Hey @Objectiontime thank you. Annoying to hear about more allergies, I really hope the steroids work for you, fingers crossed for your positive this month. No idea what the injection he would give you if it didn't work after 3x- maybe it is the trigger shot - but don't you need stuff before hand to help build follicles. It might be GCF or something which he suggested to me but i never needed it.

welcome @Taurus26 - i get that - when explain to friends or family its hard to explain. I have found that the steroids calm the NK cells and immune response and then the Intralipids actually trap the NK cells and excrete them through the lymps.I have never even heard of Lovenox so can't help you there :(

@Gizmo1983 - so nice to hear from you and so sorry you had literally had the worst time, i can't believe you're still bleeding. Hearing that from Tommy's must have been a blow too. With the two rounds of IVF left have you got embryos still in the freezer? I thought you had them tested - so surely they know the quality of the eggs? Sorry to hear about not finding anything wrong genetically with the last MC - have the CRP commented on this at all?

@Meg310532 how are you doing? only this weekend to go i bet you're looking at every symptom going. I feel like a week after every scan i feel positive and then the week leading up to the next scan i feel so anxious that it is just gonna have died. I have niggling pains too - not sure if its gas or constipation or just general growing pains but it just puts me in such a negative frame of mind and don't want to worry my husband so just keep it to myself :(

Hi hun@Jecca88 this week has luckily flown by I am so anxious about Monday as much as I want it to come round now I’m so nervous for it. I have made a plan though if this doesn’t work as I ALWAYS need a plan ahead to feel sane and feel positive. I’m going to go for superovulation with IUI. Which is where they will clean his sperm and then put it through a tube directly into my
fallopian tube as apparently means 20 percent of sperm will reach the egg rather than 5! I actually don’t have many symptoms apart from sore boobs and some stabbing pains (but they can easily be mistaken for PMS) so it’s so tricky. I’m trying my best to not symptom spot as it sends me insane!!!
when is your next scan?? Do you feel many pregnancy symptoms !? The niggling pains yoy will be getting will be the womb stretching to fit your little baby im sure, the amount of growing and changes that are going on in your belly it’s deff better to be feeling something than nothing. I think that’s how I knew something was wrong when I had my missed miscarriage as I felt ZERO symptoms like absolutely no pains or anything . So I’m sure this is a good sign for you. So easy to down a bad spiral of worry and anxiety though. Do you think you would feel better if you increased your scans to one a week or would they not let you do That? I’m also wondering if you think CRP would let me book my next appointment with dr silva rather the dr Shehata even though I started the process with him? I just felt so so connected to her, she has family in Ipswich where I live and I just felt so at ease with her. Xxx

Thank you @Objectiontime and @Jecca88 , that makes sense. I used a Premom test yesterday and got a faint positive on 8dpo and then nothing today and so I think it was one of those cruel false positives which that brand seem to have sometimes. So much cheaper than FRERs though, especially with the silly number of times I test per cycle! Praying for a line tomorrow. I don't see why they wouldn't change if you asked @Meg310532 . I had him for my first appointment and then I've had her for every one since for some reason

@Meg310532 scan is next thursday and then 12 week intralipids. I know what you mean about a plan, i even have a plan or trying to look at things positively if they go wrong after every scan just to prepare.

So my sickness has subsided but they say that when you get to 12 weeks it should, i still have incredible sore tender boobs, tiredness and spotty. Yeh its dull back pain and hoping its just growing pains or a bit of gas. Not sure if i can do weekly scans, i think once we get to Nuchal scan on 22nd and if it goes well maybe i can relax a bit more. time just goes so slowly :(

100% you can ask to see Dr Silva Edge, i really like her and feel like she is so invested and has so much time and empathy for us.

@Taurus26 that is so annoying about false positive, keeping things crossed for tomorrow - it is still very early. :)

Thank you Jecca88, will see where I get to after a couple more cycles.x

@Jecca88 so I tested tonight ! But I’m so worried it could still be the trigger shot in me
thats giving me a false positive. Tomorrow morning is the day I’m supposed to test and she said that if it’s really faint to count it as negative and re test in two days !!