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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@Hopeandfaith1990 I might try and push it again then but I don't hold much hope. I did try the recurrent miscarriage clinic but they were awful and made me feel horrendous. Did all the classic tests which came back fine and then said come back when you're pregnant which I knew wasn't good enough for me as I lost my babies early on. The GP did try and help me to get Pred but had to see a consultant at the hospital and unfortunately the one I saw was dead against steroids, said she 'wouldn't give them to my nearest and dearest' and she was definitely against the Killer Cell theory so I didn't pursue it, I didn't have the energy left at that point!

My protocol was Humira x2, pred, progesterone, aspirin, intralipids, inofolic. As I lost my babies at 5.5weeks I really felt I needed the help to hold the pregnancy and something there worked! I'd love to try just progesterone but when you've had so many losses, it's hard to take the gamble...

With Dr Shehata I tried 3 rounds with just the meds and then 3 rounds Superovulation which ended in ectopic, then 3 more which resulted in my daughter. The Superovulation can be a bit trial and error at the start working out how much letrozole to take and when to go for the scan because my cycle changed on the letrozole but I think definitely helped me as have PCOS.
Where are you in your journey? Do ask if any questions!

@Newbeginnings22023 Thank you, I'm going to try then. I kinda think when we've been through all this heartache, they should try to help! Wishing you all the luck with the Superovulation 🙏

Sending lots of love to everyone, keep strong, it's a hard, lonely journey but I always found this thread gave me strength 💪Also I did a talking therapy after my ectopic and that was invaluable, I can always find the details if anyone ever feels that would be helpful xx

@Hopeandfaith1990 absolutely. Are you with Dr S by any chance or familiar with his approach? I can tell you more about this as well if not. But in terms of superovulation, you take Letrozole tablets from cycle day 2-6 in the mornings. You start with a low dose on the first cycle and increase it if needed. Then between days 10-13 you go for a scan at CRP so they can check follicle development. I haven’t done this part before but they would typically see 1-2 follicles if all goes to plan, and they like to see a dominant follicle at that point. If they’re satisfied with the scan then they give you a trigger injection to time ovulation and instructions about the days to have intercourse. Typically this would be between 2 days before ovulation to the day after ovulation. Then around 2 days after ovulation you take progesterone supplements and whatever other medications you have if you see Dr S (in my case it’s prednisolone and blood thinning injections). Then you take a sensitive urine pregnancy test 10 days after ovulation. If it’s positive you continue with the medication, and if negative you stop all meds. I’m doing the opposite where IVF didn’t work for us so I’m attempting something less invasive this time around. Please let me know if you have any questions. Really sorry for your losses, I’ve had 5 as well so know how you feel xx

@Deerdancer34 I hope the GP supports you this time, best of luck and thanks so much for your wishes xx

Hi everyone, I’m new here.
3 x MC TTC baby #2

I’m seeing Dr Shehata on the NHS. I have received my treatment plan today. I will be taking Hydroxychloroquine & aspirin (already taking) and then when I’m ovulating I’ll also be taking Prednisolone and a progesterone suppository.

Would love to chat to anyone who has had a similar treatment plan. We’re having this month off trying to allow the meds to build up. So hoping it happens soon for us.

Hello everyone, I’m returning to Dr S this year following a successful pregnancy in 2023 resulting in our baby boy who is now 17 months! I never thought we would be parents after having 7 losses but we got there in the end. I’m happy to share more details if anyone is interested!

We are going to start trying for a sibling (via IVF) and went back to Dr S who said we need to repeat all the tests again (RIP my bank account). Obviously it came back as saying I still have high NK cells etc so need the same plan as last time.

However, since returning to the clinic and having the tests done, they have told me my personal confidential data has been breached twice on two separate occasions?? Apparently once they sent my info to another hospital in London I have no connections with, which I am not too fussed by, but the second time they sent my personal information to another member of the public?? I am not ok with this and don’t understand how they could have made this mistake - twice! Has this happened to anyone else?

That's awful re the recurrent MC clinic, I'm sorry they were so crap. I would definitely push again - you could take the Dr S/private test results and use them to persuade them. I did something similar when I first pushed for progesterone and it worked. Then again I know that the pred/steroids and NK theory is a bit more controversial so it might not go down as well. You never know though!

That's good to know re the superovulation - thank you. I am 2.5 years into TTC my first, had 1 ectopic, 2 MMC and 2 spontaneous MC. I'm at the point where I think I've exhausted all NHS stuff and need to go private for anything further now. It just feels a bit daunting to let go of the NHS support I've had so far which luckily has been pretty good.

I'm not officially with him yet but I'm talking to the clinic about potentially doing superovulation next cycle. Thanks so much for that info - it is really helpful to know what it would entail etc. I'm sorry IVF didn't work for you, it must be beyond upsetting to go through something so intense and draining and it not work :( does the superovulation process feel a bit less draining than IVF? I'd imagine so.

thank you. Its such a crappy group to be a part of but it is really validating to talk to people who genuinely understand how hard it all is! xx

Hi @SWMum9 So sorry to hear about your losses. I am on a very similar treatment plan via NHS. Hydroxy, aspirin, pred & progesterone from ovulation. I find the hyrdoxy and pred quite tough re the side affects but some people are absolutely fine on them. Is this your first time on the protocol?

Hi! I love hearing success stories, it gives me hope! Congrats on your baby boy. So sorry to hear of your losses before then, did you have any of them on the protocol? Do you know how high your NK cells/markers are?

Re the data breach, that is awful!! I would be unhappy about this too. Have they been apologetic? I wonder if you could address it and kind of ask them for some kind of compensation/discount for treatment as a good will gesture for such a colossal mistake? All medical data is sensitive, but fertility stuff is especially so. If you know anyone lawyerly you could ask advice there depending on how you want to play it.

@Hopeandfaith1990 I'm incredibly sorry for all your losses, I know the pain but keep that strength, it was determination that kept me going for 4 years...
Thank you for the info! I will try again although now I've had one, I'm not sure Recurrent Miscarriage Clinic would see me anymore...we shall see.
Your Miscarriage clinic put you on pred etc? Is there anyway you can keep the NHS too? So get the meds off them but do Superovulation through CRP?

Hi Everyone, had our test results and treatment plan this afternoon- to say I'm feeling blindsided would be putting it mildly.

All of my results for natural killer cells were high, the activation marker was very high and the IFN-gamma was almost off the charts high.

Dr Shehata went through the results and plan at such break-neck speed, it was really hard to take it all in, he wants us to start with Adalimumab injections x4 to bring these numbers down and then start hydroxychloroquine pre conception as well as Omeprazone, Prednisololone, Utrogestan and intralipids. I haven't seen anyone else mention the Adalimumab- can anyone tell me anything about it? Did it work, did you have side effects?

I had fully expected to be told I had normal results as I'm 41 and quite possibly down to chromosomes, but he didn't seem to think age was particularly relevant and basically said without treatment, I'd be almost guaranteed to miscarry.

One thing that was interesting, is that I mentioned I'm very rarely sick- no colds, coughs etc. He said a lot of people with high nk cells said this- does anyone else relate to this? I always felt my strong immune system was a good thing, very weird to find out it's causing miscarriage.

We haven't made a decision as yet- still both need to get our heads around it I think. I'm inclined to go ahead, but realise I may just be setting myself up for heartache. Regardless, we need to now start using contraception for the first time as I'm not putting myself through a guaranteed miscarriage.

I hope everyone else is doing okay- sorry, haven't had the chance to go through all the updates, but I I'm wishing you all well.

Thank you!

It's definitely worth trying again w NHS just in case you can get some of the meds cheaper.

Yes, recurrent MC at my NHS hospital (St Helier) put me on the pred/hydroxy etc. That's kind of my plan - but I don't think it's technically 'allowed', if I told NHS I was doing superovulation w Dr S they would discharge me (I think) and I'd have to get all the meds from him which would be much more expensive. So many decisions involved in this TTC journey!!

Hi, that sounds like a lot of info to take in when you weren't expecting it! I've not heard of Adalimumab or had it but I've had the hydroxy, pred & omeprazole. It must have been hard to hear him say you'd be almost guaranteed to miscarry - quite a harsh way to put it but I guess its good for him to be up front. The NK cells thing is quite hotly debated so I wonder if another recurrent MC doctor who doesn't support it would think the same. Its such a minefield.

I am SO rarely sick! So I definitely think he's right there, I've felt worse cold/flu wise than I have my whole life when I'm taking the medications, which makes sense and they're lowering your immune system.

Across these threads there are a lot of success stories of people with high NK cells and using the protocol. I think it is becoming a lot more recognised, which keeps me going when I feel despairing! Its definitely worth taking some time to research it and fully understand it before going all in. Financially and physically this is a very challenging journey xx

Thanks for your reply. In a way it's good to know there's a reason behind the miscarriages- and it does give us a very clear choice, give up on having a baby or pay for the protocol. I've read so many success stories, including some good friends of my partners who had been ttc for seven years with five miscarriages and then had their baby with CRP, I want to give it a year and then call it a day, but I know I may feel very differently after that year.

It's really interesting to hear that you're so rarely sick, I'm prepared to feel run down with the medications, the thought of pred, weight gain and 'moon face' scare me a bit, but I figure it's only for a finite period.

How are things with you?

Yeah I do agree that its good to know why. That's amazing re your friends - CRP definitely do have a good reputation. I'm unsure whether I've had the pred induced weight gain or moon face tbh - I think the miscarriages in general have caused me to gain weight over the whole TTC period. Also every time I'm pregnant I'm terrified to breathe let alone exercise, which doesn't help!

Things are ok thanks - I think we are leaning towards going private with CRP soon, all of my care has been NHS at the moment but we're coming up to a year of not having conceived after my last miscarriage in Sept 2024 and its getting tough(er) to keep going naturally.

I'm sorry to hear that, it must feel like a long time to keep the faith. Can I ask what the difference is between your treatment on the NHS and with CRP? I wouldn't be eligible in any case, but curious to know.

So on the NHS I've had my NK cells tested and all the other quite thorough bloods/testing. I've been prescribed Hydroxy, progesterone, Pred and Omeprazole. NHS can't offer intralipids or any other medications for my conditions (I don't have any blood disorders etc, just the high NK cells). I've had one MMC on this protocol so when I asked what happens next, they basically said nothing and I've reached the top of all they offer. Quite depressing really.

So if I want more immune stuff, I'll have to go to CRP. I can't get any superovulation/medicated cycles because that comes from Fertility department who do not consider me infertile because I have been pregnant within a year. So they discharged me - even though I don't have (and didn't at the time either) have any living children. Also annoying!

Would you not be eligible for NHS routes because you've already gone privatE?

Oh that is depressing, and annoying! Did you find out what was the reason for your MMC? I'm sorry- the NHS can be so inflexible at times.

I've 'only' had two miscarriages and so can't be referred for any testing until three. I'd had the main AMH, thyroid tests done via Bupa so knew that the basics were covered, so knew it must either be a chromosome issue or something more complicated. Both of my miscarriages were almost identical- MMC at around 8 weeks, which made me think there was something behind it.

In positive news, I had a long chat with my partner and we've decided to go for it and order the adalimumab injections. I've always been more keen for a baby than him, and I really thought he wouldn't go for it, but he's been so supportive, even down to cutting out the beer and ordering all the vitamins for himself in massive quantities! This will make you laugh- I'd run out of prenatal vits so went to order some more on Boots, I asked if we needed anything else and he said, "well, probably condoms" (as we can't get pregnant now for 8 weeks on the injections). Boots must think we're pretty confused ordering condoms and prenatals on the same order- ah well, you have to laugh!

@Fletchasketch I know exactly how you feel, it is incredibly overwhelming and I really had no idea what Dr S was going on about tbh, my head couldn't take it and I just went along with it because I felt there were no other options but at least he came recommended to us.
The Adalimumab is the Humira injections I mentioned but they can be called different names now the patent ran out (a good thing because its 'cheaper' now!). It helped to bring my NK cells down and had no side effects.
So pleased for you that you have made a decision, sending you lots of luck for your journey 💪

Oh I see! Yes, I've seen Humira referenced a lot, so that makes me feel better- thank you! Good to know he's not giving me something obscure that nobody else gets. Apparently I'm likely to need 4 injections as my levels are so high- so just hope it works! It sounds like you have been on a hell of a journey, I'm so pleased to hear you have your daughter now. Wishing you all the luck for the next part, thank you so much for the info and kind words- it really is such a scary place to be.

@Fletchasketch Thank you 💖 Yes it's a crap place to be but do use this thread, I found it helpful to talk to people who understood. Also to ask questions about Dr S because it is a lot to take in/understand! I have to say having a plan did make me feel much better, rather than just feeling 'abandoned' by the NHS, so hopefully you will feel that too now you've made the decision to go for it! It is still a bit trial and error & might not be plain sailing which I found hard to take when you just want an immediate solution (+ you're paying & don't know what the outcome will be). Buuut thanks to his research & ability to provide alternative meds, he does provide hope & has helped so many women...the NHS just won't finance trials at the moment 🙄

They think all my losses are down to the NK cells (bar the ectopic).

Urgh I'm so sorry I hate that rule. Did you get karyotyping done with your MMCs?

That's great news re your decision, it sounds really positive and its so good to just have a plan. Ha - that is funny, I hate to think about how much I've spent over the years on prenatals etc!

@Fletchasketch may I ask what your NK levels were? I will be on pred next time I get pregnant but I am wondering if I ought to ask about the Humira?

Does anyone know why the information online is so mixed about NK cells? I can’t find many research studies. A lot say the treatment of high / over active NK cells is controversial?

@Hopeandfaith1990 no, no karyotyping, NHS were firm that each time was random chance and nothing would be offered until 3 losses. I think it does help knowing there's a reason, though dealing with the NK cells in my case won't help with the high chance of chomosomal issues which are 1 in 3 over 40.

@Objectiontime of course, I'll post them all below:

Natural Killer Cells Count: 315.7- High
Lymphocytes %- 15.3- High
Activation Marker of NK Cells: 1.91- Very High

NK Cell Cytotoxicity Assay- 27 % High

TH1:TH2 Cytokine Ratio
TNF Alpha: 17.2 Normal
IFN gamma: 31. 4 Very High

Interested in any interpretations on the results- I've already been told they're very high, so no need to worry about upsetting me ;-)

Thank you ❤️ I’ll let you know how it goes this cycle as it’s my first time trying it. It’s definitely a lot simpler than IVF. With IVF your body goes through so much hormonally with the various injections to stimulate all your follicles to produce eggs, then the egg retrieval then embryo development and transfer. Super ovulation in comparison is a breeze physically, emotionally and financially I would say!

it really is helpful to be part of a supportive, empathetic group who understand the challenges we go through xx