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

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@Jecca88 that’s so good if the NHS allow you to do IVF funded, I just think they can clearly see you have supported your own way financially through this journey you deserve to have some help from the NHS ! It’s not fair ! I think you told me before but why did you not quality for free NHS ivf ? Why are you having to fight for it ??? Is it becsuse you are able to get pregnant ? Ridiculous tick box exercises sometimes isn’t it !!!!!
aww that’s so nice you have a holiday booked up :)))
my appetite is out of control at the minute I’m just so hungry and pretty sure it’s from the steroids ! I’m trying so hard to be good and not eat too much but equally I can’t help it haha ! My 10 week and harmony is next Friday I’m so nervous xxxx

Hi everyone, I'm glad (for want of a better word) to have found this thread, I've read all of the other Pred/immune related ones and was hoping there would be an up-to-date one. I'm so sorry that everyone here finds themselves here. Recurrent pregnancy loss is so incredibly cruel and takes such a toll on every aspect of life.

I'm 34, trying for our first for about 2.5 years. In that time, I've had an ectopic pregnancy (lost right tube), two spontaneous miscarriages and two missed miscarriages all under Epsom. Been under the recurrent MC unit for about a year now. I have high NK cells so I'm on pred, progesterone, aspirin from ovulation and hydroxy all the time. I haven't conceived since my last missed miscarriage in September 2024. Recurrent MC unit have informed me that my next step if I MC again are the intralipids. I've never met Dr S but I believe he chairs the recurrent MC department at St H - NHS have told me I've maxed out all treatment they can offer so I'll be going private next if needed.

Does anyone know how much the intralipids are on their own? I can't seem to find the info on the website. Also, will Dr S take your NHS records/scans or does he make you do new ones?

Thank you!x

Hi @Hopeandfaith1990 so sorry to hear about your painful journey, it’s so unfair isn’t it !!! Who have you been seeing at Epsom? It’s only P.Shehata and Dr.Silva there I thought ?? I think the Harley clinic is closed now, I didn’t realise he was any where else? So the intrapalids are an addition to help control bringing down the activation of the Nk cells and they cost £380 an infusion. For me he gave me the results and it showed that my Nk cells would be bought down enough by the pred the infusions aren’t as effective as the steroids but he likes to do them as a additional to be safe! He will take all of your NHS results as long as they are within date. Have all of your loses been similar weeks ? Xxx

Thank you, that’s really helpful. I’ve seen Dr Viswanatha and Dr Ucyigit across Epsom and St H. Dr Ucyigit told me that Dr S doesn’t practise within the NHS but he is the head of the recurrent MC units and he determines the protocol / plans within NHS restrictions.

So if I were to go down the intralipids route I would go to CRP. I’m glad he would take my NHS testing, I’ve had so much done it would be annoying to have to start again. Dates wise, my ectopic was 7 weeks, MMCs both 9 weeks but actually
died around 7 weeks. Spontaneous MCs about 6.5 weeks.

I'm sorry about your losses too, and congratulations on being pregnant now 🙏🏻 hope you’re feeling okay!!x

@Hopeandfaith1990 thanks so much. How many mg of pred are you on? Are you taking oral progesterone ? I found the utrogestan worked better for me than the pessaries. CRP clinic give the oral tablets. With the infusion they will make you have one pre ovulation then from positive preg test and then every four weeks. Yeh he will deff take any results you have already which is good :)) the infusions take about an hour- hour and 15 ish xx

@Hopeandfaith sorry to read your story but glad you found us. It’s a kind and sensitive bunch here - it’s a lifeline when others in our lives just don’t understand or you have to explain too much to make it worth the effort. Sorry I can’t help with ins and outs of Intralipids, I’m overseas, just wanted to say welcome

@Meg310532 ugh yes to oral progesterone rather than the pessaries! So relieved when my consultant agreed to that.

I am currently on 25mg of pred, my progesterone is 2 x Cyclogest pessaries at the moment, but I'm considering moving to 3 pessaries this cycle as the past 2-3 cycles I've had brown spotting (sorry TMI) about 9-10dpo, which I never used to get when I took progesterone (been on the cyclogest for over a year now). So, I think the 2 pessaries might not be enough?! Who knows. I need to get a 7DPO blood test tbh, I'll try and do it this cycle then I might increase after that.

Is the oral progesterone stronger? I don't know why I'm having the spotting when on progesterone, I do them rectally too so no cervical irritation etc.

Thank you - I might get in touch with him re the infusions. I'm so sick of this journey now tbh, I just want to throw everything at it.

@v60 Thank you! The lifeline sounds like just what I need. My friends are supportive but there's only so much they can empathise, my 3 closest friends got pregnant on their first/second cycle trying and have had successful pregnancies so its just so far away from my experience. They try but its a very lonely time to be completely honest. How are you finding the treatment etc overseas? I'm in the UK now but I lived across China and Thailand for 7 years and I keep wondering what it would have been like if I was still there xx

Hi! I'm new here and I'm really sorry if I'm butting in on a thread which is not suitable for me to do so! I'm desperate for another baby- I have a 1 year old and four year old.
4 year old born at 39 weeks, induced, resulted in ongoing fecal incontinence.
1 year old - I had pprom at 26 weeks, was told labour 75% likely in next 48 hours-1 week but she held on till planned c section at 34w. Daughter had a brain bleed, needed to be resuscitated, ventilated too. They think I ppromed due to psuedonomas colonisation in vagina. I was on IV meropenem at 24 weeks then st 26 weeks my waters started leaking and continued leaking
Thing is my nana ppromed at 33 and 32 weeks and had her 3rd and 4th daughters then and my mum ppromed with me at 35+6 (her only child).
I don't know whether to see quenby or shehata for another pregnancy (hopefully). Can I get advice please?

@Meg310532 Hope you're doing well! Had a message from the CRP Following my results and they said that i don't need to go in for a consultation before i start trying again (maybe they are feeling bad for charging that fee) and that i can go on the same protocol as this was a random 'chance' thing. I obviously need to sort the retained products - hoping my period comes this week - if not will need to go back for another scan and potential hysteroscopy. The IVF is not simple funding requests as we can get pregnant - so yeh they need to call and explain. I think the IVF was just a plan to have as a fall back - but hoping we can still do it naturally. Honestly on the Pred - I just wanted to eat and all i wanted to eat was cakes and sugar. If you do the Harmony test this week - how long do the results take? Also Meg you mentioned about Intralipids only reducing the NK cells by a bit and not as much as the other meds. What was your level? Intralipid - at 3mg is 41% effective and Pred at 10mg is 55% effective in reduction in killing.

Welcome @Hopeandfaith1990 I am so sorry you are here but know you are not alone. Have you had further miscarriages on the treatment at Epsom? Have they tested for NK cells and immune related stuff? as the treatment sounds the same. I thought Dr Shahata runs rec mis at Epsom - i had a consultation with him there after i had started the private stuff.
He said to me that his NHS clinic only provides the pred, hydrox and Cyclogest and all scans and stuff but NHS doesn't support the intralipids - but you can't mix private and NHS so we just stayed private.

Also have you had a scan since your last MC in september? just to see if scarring or retained products?

Welcome @SpudAndShades I am sorry to hear about your experiences, i am sorry i can't give any advice or info. I am so sorry for all your family trauma and its so sad it has happened to most the woman in your family. From what i know Dr Shahata treats recurrent miscarriage in relation to immune related stuff usually at the early stages of pregnancy. Have the doctors said your loss is immune related?

@Jecca88 Hi Hun, Ahh im glad they arent going to make you come in for a consultation and pay again, hopefully they are feeling bad for what happened, i still cant believe they did that !! Do you feel okay with going onto the same treatment plan? The thing is the immune side of things and the protocol did work didnt it, there wasnt anything that they could have done to save your little boy so I do feel like the same protocol is a good option. IVF if NHS dont fund it is just another blow of money too isnt it!! I am deff going to do the Harmony test hun, they say it takes like 3-10 days but i have read most results come back in within a week. I am really really anxious about Fridays scan. So with my results they were at 26% NK-Cell cytotoxicity and it said that the infusions alone would bring that down to 21% (which was still High as needs to be 20% or lower to be normal) And the pred 10mg brings down to 16% but I have been put on 25mg which seems a hugh mg actually having just read the results? ... hmmm ! Whats the next step with the retained products? xx

@Meg310532 yeh i do feel ok about that as don't want to add more drugs to the mix and actually feel immune stuff is ok with that protocol. I wouldn't fund IVF myself well who know, it is a lot of money ontop of what we have already spent. I have always wanted two children - so maybe IVF is an option when i am bit older. ahh I am sorry you feel anxious about Friday, if you get through that and the harmony tests is good - you're in the clear for the immune stuff :) Just know this is a new pregnancy, new drugs and it can work and can be successful :)
Interesting - my toxicitity is only 22%, he did say anything above 20% is high. With Pred it goes down to 10% and intralipids to 13%

@Jecca88 Isnt that weird that the intrapalids and pred all react and work differently on different people, I thought they all worked the same on each person. Thats actually pretty interesting. So could you just have the infusions rather than taking the preds as the infusions work alone? Or would he not want to do that? He wouldn't give me the option of no infusions to be fair, not sure if that is money reasons and they want more money from them or if he thinks that they actually make that much diff! ..

Yeh deff, its just so much money isnt it. gaaad!

Thanks hun, im deff trying to keep my mind in the best place possible with it all, its just hard when the bad thoughts start trying to creep through, Thats exactly it once i get the harmony results back and if there is a heart beat on Friday then i will feel so much better!!! xxx

@Meg310532 yeh it is, but I suppose that’s why they put people on different protocols! You know I think everyone at the CRP needs to have the intralipids - they work differently in a way they collate the NK cells and expell them whereas the other stuff suppress’ them. The first two losses on the protocol i wasn’t on prednisolone so defo think I should be on that next time round as it was the furtherest I got and heartbeat etc!

yeh I do think though that if it gets me to my goal of having baby I would literally spend every penny to my name, it’s the not knowing and spending endless with no diff outcome that is hard. Wish I had a crystal ball.

yes exactly and remember this is the furthest you have got babe! You have got this. I believe this is your time ❤️

@Jecca88 Thats so true, there is no amount of money that we wouldnt spend is there!! ... ohhhh thats interesting i didnt know that about the infusions thanks hun for clarifying!
ohhh yes deff go on the pred then for sure.
Thanks so much, I really hope it is too, i will let you know how Friday goes, its nice an early at 9am like i like it!!!! x

@Jecca88 Thank you! I've had one missed miscarriage on the protocol (Pred, Progesterone) but not on the Hydroxy - really hoping if I fall again the Hydroxy will be the game changer. I had my NK cells tested in July 2024 which let to the protocol being established after my 4th loss. My results were:

NK cells (blood) total count
Jul-24
389
NK cells (blood) total activation marker
Jul-24
0.2
NK cells (blood) total count: Lymphocytes
Jul-24
17%

Yeah its annoying that we can't mix NHS and private - I do get it but I feel like if I share my notes/results etc I could easily add on the intralipids on top of my NHS protocol. I haven't had a scan but I had an MVA to remove the pregnancy, they scanned after it and said there wasn't any retained products. Not sure about scarring, it might be an idea to have another scan tbh. I'm also considering another Hycosy as I've only 1 tube. I really don't want to do another one though haha I hated it. I'm 3DPO today and trying to stay positive but I can feel the negative intrusive thoughts creeping in!

@SpudAndShades So sorry to hear you've had a traumatic time as well. Sorry I can't offer any useful advice, but I wonder if you might be find more answers looking for someone who specialises in Pprom ? Its not something I know much about to be honest. Wishing you so much luck xx

@Hopeandfaith1990 how are you finding the hydroxy? I actually felt good on it and hardly ever got ill - surprising as it’s an immune suppressant. Ahh that makes sense and maybe Shahata was involved in the prescriptions/review of your results as I thought only three doctors in the UK look at NK cells on NHS and he is one of them.

it might be worth getting another scan and a 3D one just to check, esp if you get pregnant quite quickly. It might also just put your mind at rest. I’ve had never had a hycosy but heard they are horrible.

fingers crossed for this month. It’s worth calling the clinic to see if you could have intralipids in addition. I also know other clinic would do intralipids so if that fails explore that maybe?

I'm finding the hydroxy horrid! Haha. It makes me feel run down, my eczema flares and I am sleeping terribly! Between that at and the Pred the insomnia is pretty bad. Please send any tips my way. I take it at 6am because I'm up early for work and take the pred no later than 7.30 after brekkie.

Thank you, that's really good advice. The hycosy wasn't fun, but I did conceive the month I had it done. Can't really say it that way why but could have had something to do with it.

I'm going to send CRP an email re the intralipids and see what they say. How are you feeling? xx

Thank you - the doctors think an infection caused the pprom but are not sure. It's really hard trying to piece it all together if I'm honest. Pprom specialists are few and far between and it seems to be a massive postcode lottery

Thinking of you today @Meg310532 ❤️ let us know how it goes

Thanks so much @Jecca88 all went well ❤️🙏🤞 had the harmony test today and get the results in 5 days so hoping everything is okay from that and then I think I will be able
to breath a bit. I got into the room this morning and sat on the chair in front of Dr silva and just cried as I felt so anxious she was so lovely and just got me straight onto the bed to scan me ! How are you ?? Xxxxx

Hi @Meg310532 im so so glad all went today that’s a fab milestone ☺️. Just keep doing what you are doing.
hey @jecca so pleased you had a better time with CRP it makes things a bit better doesn’t it x
afm had a scan on Tuesday can you believe that tiny bit of tissue is still there they said it’s so small that if they didn’t know to look for it then they would never see it, they said it shouldn’t interfere with ttc and it should shed with my periods. So here’s hoping. I have 5 follicles in one side and 4 on the other which is amusing considering last ivf cycle I only got one on each ovary even with all the meds. Hubby had sperm retested, they’ve said it’s fantastic in honesty it made me feel so much worse knowing he is fab and I’m just getting older and feel even more guilty. We speak to the dr a week on Tuesday so you we will see what he says about own eggs/donor eggs. We are off to Florida for a couple of weeks it has a very low risk of zika but we can get tested when we get back and then we will decide our next step.
im so annoyed that even mummy pig is pregnant again and im not and its all over the news even fb and its honestly really got to me lol. How daft is that. I think some time away will do me good xxx
love to all xxx

@Meg310532 i am so relieved for you, not going to lie i was anxiously waiting for this message on friday. Hope you had a lovely relaxed weekend. hoping for good harmony results - you also get to find out the gender!!

@Gizmo1983 that is so annoying about the remaining bit of tissue, do they say it has vascularity? Also amazing about your follicle numbers, what are you thinking about using your own eggs - or will you wait to see what doctor says? Florida sounds lovely and just what you need! Lols - i didn't know what you meant about mummy pig, but just goggled - peppa pig! ahh everyone outside this group with pregnancies can f* off.
So i think i had my first period that started on friday, but TMI - its just brown and very light. Quite painful but has subsided. Basically i have no chance of the retained products coming out, so think i am gonna go back to hospital this week and see what they say about hysterocopy. Had some social engagements this weekend - which was the first in 8 weeks and they were ok, quite exhausted after as put on a brave face, but feels good to see people.

Lots of love to all xx

Hey @Jecca88 sounds like our retained product situation has been really similar. So what is left of my retained product is part of the endometrium. I gad a hysteroscopy after 7 weeks and they took a biopsy of it instead of removing it ffs and it came back as part of the thick endometrium of the pregnancy. So they gave me the provera but I bled through it so that was bloody useless. I’ve literally just got off the phone with the consultant and she’s said it is so so small now that it will just shed with my periods. I’m not sure how i feel about it to be honest the only reassurance I have is my ivf dr has said the same thing that if it’s that tiny and endometrium then we can crack on with starting ivf. I don’t know if this bit is vascular or not if I’m honest. I’m so sorry you’re going through the same thing it has got to me more than the actual miscarriage. Are you still bleeding? Mine stopped but I had a random bleed yesterday so no idea what that was. It’s crap isn’t when you’re waiting for this heavy period to clean you out and it just doesn’t happen I was so ready with the heavy pads after the provera and it just didn’t happen ffs.
i had fresh blood tests from the ivf clinic and was supposed to have my consult tomorrow but hubby double booked with work so had to make it a week later, you can imagine how that went down lol i was soooooooo pissed off.
honestly if it was me I’d go straight to donor eggs, i have no doubt it would make no difference to me but my only worry would be the child and how it copes I would tell he/she from very young but they could never trace their dna mother as we will be doing it In Spain. Hubby will do it but not so keen but is at peace with it. I just feel that my body gets more damaged with each loss, the last one I got a blocked tube, this one the retained tissue and it’s the energy and the loss and just the time I don’t want to be a too old mother, if I did get pregnant with one of my own eggs I’d just be so sure I’d loose it again. But it could also work, we are going to see what the create consultant says.
still don’t know if I’m going to go with CRP again hubby is strongly against but I just don’t know. think I’ll have a consult with them and go from there.how are u feeling about them now xxx I still think it’s so awful what they did to you.
lol so funny you looked up mummy pig I can not believe how much it just pissed me off, like 3 people have said to me ( 1 being my bloody husband) saying oh wow look mummy pig is pregnant again and then another friend showed me a picture of her fucking scan for ffs) I have to laugh really at myself but it’s still not fair lol.
did you say you were going on your hols again, hubby really wants to do Disney and universal not really my thing but he really wants to go so why not can’t believe it’s a zika zone but there hasn’t been a case since 2017 we will just pay for the tests when we get back knowing my luck I’ll be the 1st to get it since 2017 😂😂😂.
i had a proper down day yesterday about having such bad luck but as hubby said we could have had worse luck we can still try again it’s not over yet he is right and I do feel a bit better, I just wish I could see in the future just to see if we actually do actually make it to our goal or not.
sorry for the novel lol. Lots and lots of love to all and hope you’ve all enjoyed the teeny bit of sunshine we’ve had xxx

Hi hun @Jecca88 so I had the call today with my harmony results and they said that it’s 1
in 10,000 which is low which I’m really happy about :) I have my 12 week scan on Monday which is the 45 min scan to check for the things that the harmony test can’t check for.
Social situations when you feel you have to put on a brave face are so hard and exhausting aren’t they. I just made sure I was always with friends that I didn’t feel I had to smile if I didn’t want to. Sorry to hear your body isn’t getting rid of the products itself that’s so frustrating for you, just feels like you aren’t able to move forward I bet.. are you feeling any better about CRP clinic ?? I still can’t get over that situation!
@Gizmo1983 its so hard when your husband isn’t on board with something , what would be the other option if you didn’t go with CRP clinic ?? Would the place in Spain with the donar egg do everything CRP could ? Xxx

Hi @Meg310532 massive congrats on those results that’s absolutely wonderful news. I’ve got everything crossed for you for your 12 week scan I’m sure everything will be fine I know you never quite loose that fear ❤️.
i can get everything except the hydroxy, there’s a company I forget its name in Manchester that does online appts and they will prescribe hydroxy until 12 weeks I think it may be called nova fertility. The ivf clinic will give me everything else except the intralipids I’ll be honest I’m not too convinced intralipids do anything anyway but I’d like to get the hydroxy if I could. Xxx