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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I guess this probably stems from the fact that it is quite controversial to suppress the immune system and make someone vulnerable to viruses etc. I do share some of your concerns, especially having signed something which acknowledges the medication 'isn't licensed for pregnancy'. I was, however able to find quite a few studies that support NK cell theory, and it was encouraging to see that Pfr Shehata also has an NHS clinic. From what I can tell, NK cell treatment is far more common in the US where everything is paid for, in the UK where most people use the NHS, I guess it's far more cost sensitive.

These are of course, just my own thoughts, and I'm more than happy for anyone to tell me I've got it wrong.

Thank you for sharing. I’m under the NHS on my protocol so I’m really glad this service was available to people. I’ve had 3 x MC now so hoping the next one will stick

These are my results if anyone could help me interpret:

Thank you, always good to compare info. I'm not with CRP so my results are a bit different, possibly less detailed. They are hand written too so a bit hard to understand.
I know my NK cell count was 251 which he said was very high so I get why yours would be considered to be too.
I dont have anything for lymphocytes and my activation marker if NK cells was 1.01 which isnt too bad as I think it needs to be below 1.0 I think.
Nk cytotoxicity for me was 21% which I think needs to below 20% so again not too bad.
I was also told that my chance of staying pregnant without treatment was virtually zero. I am supposed to be on a protocol of low dose aspirin (all the time) and just for better blood flow, pred from ovulation, cyclogest from a positive test and intralipid infusions but u cant have the infusions because I am allergic to a couple of the ingredients.
Hoping that the rest of the medication alone will do the job next time and hoping I get to find out soon but it is now six months since my last loss so who knows,

It's all so draining isnt it.

I think from what my anti-NK cells Miscarriage Clinic Consultant said, there isn't 'proof' that NK cells is a thing because there haven't been the trials in the UK and therefore the NICE guidelines don't advocate it...She basically says it comes down to lack of financing for trials. Like with anything you have people for and against a theory. But in my opinion medicine is always evolving and this area should be researched more but then its hard to hold trials on pregnant people! Thank goodness there are people like Dr S who are willing to not just go along with the status quo and try things...Although can be a bit scary for us when you sign that form!

Like a lot of people on here, I'm sure, I have read everything I can find on the subject, including as many research papers as I can dig up. From this I do know that there are more than a couple of eminent professionals in the fields of pregnancy loss and miscarriage who dont believe in NK cells being an issue. They say they are needed for implantation, etc, etc and that the female body cant possibly reject an embryo as a foreign object. Personally, I beg to differ! Nobody can really say this for sure. Why these highly qualified professionals are so sure of themselves I dont know. I cant understand why they completely reject the theory that for some women the half foreign body that is the baby is not accepted by the immune system. To me it's like saying 'Why is xs heart not beating, of course it is, that's what hearts do'. Medicine is a science and at the heart of science are those that ask questions and those who seek answers. It should be a question of research and experiment not assumption and I think all of us on here would agree with that.

As an interesting fact, a couple of years ago a friend of mine was undergoing IVF for personal reasons. She managed to get 5 good quality embryos and was extremely fortunate that the embryos implanted. Note I say embryos, plural, because each time she had a transfer it worked and then she lost each one between 5 and 8 weeks. Heartbroken, she had a hard discussion with her consultant who, as it happens, was one of these eminent consultants well known in the field. She had already had about every test that the consultant was willing to consider but my friend dared to question whether she might, potentially have an immune issue. The consultant was pretty adamant that there would be no correctable problem that was immune related but conceded that my friend may as well get checked.
Sure enough she was found to have high NK cell cytotoxicity and was treated for the immune issue before and during the transfer of her final embryo.
9 months later she had a healthy baby girl

We here know that there is no one size fits all treatment protocol but I'm pretty certain about the issues existing.

@Deerdancer34 @Objectiontime you’ve both put it so well- particularly good to hear your friend’s success story.

So just had the update that my humira order is being delivered any minute. Debating whether to take it right away or wait. We’re going on a much needed break to France tomorrow and don’t want to ruin it by feeling terrible- equally don’t really want to lose 4 days needlessly if the effects are usually mild (as NHS seems to indicate). If anyone has any advice here, I’d appreciate it.

Hope everyone has a lovely Easter break x

@Objectiontime That makes me so emotional... it took your friend to really push for it. What's hard is before all this I had no understanding that it could be an immune issue so I had no idea what I was asking/looking for. I expected the professional doctors to help me...Why some professionals need to be so adamant and set in their opinions, rather than open to further research etc is beyond me. Medicine should always be evolving and improving to help women and to make it easier for women in the future.

@Fletchasketch I had absolutely no side effects so I personally would take it, then you know its done and can go away, relax and forget about it! I was desperate though, so I did mine straight away 😅 but if you feel ok about waiting 4 days too, in the grand scheme of things it won't change too much. Depends what would be more relaxing for you 💕

@Deerdancer34 thank you, this is really helpful, I’m very tempted to.

I was so deflated when he said I’d probably need 4 of these bastard injections and more tests and another follow-up adding at least another couple of months that I really don’t want to prolong it any more than necessary.

I know, I remember the feeling well, when he said I wasn't allowed to get pregnant for a few months. Try and take it as a way of preparing your body and some time not to think about it....(not that I took my own advice), I was very resentful as I was not in a good head space, my thought was I'm paying, you make it happen 🙈
If you can try and take some time to relax and not think about it, it might do you the world of good. I had an enforced break of 3 months after my ectopic and actually it probably really helped because it was the first time in 3yrs that I wasn't thinking about conceiving...
(Also if you know what your cycles are, you might be able to work it out with the Humira, so it's only 2 cycles rather than 3 cycles that you are missing, if that makes sense?)

Yes, this is great advice. My vit D levels were not great (64) so hopefully in a few months the supplements will have increased these levels. My partner's gigantic supplement order arrived yesterday too, so in a few months his swimmers will also be in better nick. It will be at least three cycles for us though, as I'm ovulating tomorrow- damn!

Determined to stay off google over the next few days and just enjoy good food and good company. Thanks so much for the support, I am sending a hug and much luck to anyone who needs it. x

I’m having a bit of a freak out about waiting a month for the HCQ to build up before trying again.

Would the progesterone & pred work on their own without the hydroxychloroquine if we did try this month or am I just being silly

I completely get it 💗 I've often thought that with my protocol and missing out the intralipids...but then it's a gamble. I think it depends what you feel you could go through. I admit I do feel a bit trapped in a way because I would love to try without some of the meds and save time & money etc but I personally know I cannot go through another loss, so I dare not take the risk (although I realise a loss could still happen, which it did for me). I don't know about HCQ but the only thing I would say, which Dr E said to me, you wouldn't want to go through another loss and lose time that way. Sorry I know not very helpful & it's very personal to how you feel. Is this your first time on a protocol? I would maybe try and look at it that you are preparing your body the best you can and giving yourself the best chance with all the meds?

@Deerdancer34 @Objectiontime I agree, very well put! I really appreciate reading everyone's opinions on it because when I first got diagnosed last year I was really confused about it all.

@Fletchasketch I can't believe they didn't karyotype, that's so frustrating. The three losses rule is so freaking cruel.

@SWMum9 Are you currently NHS or Dr S? My NHS protocol was just the pred and then I added on the Hyrdroxy later. Have you had a loss on the pred? When I had a loss on the Pred, that's when they added the Hydroxy. If you've not had one, depending on your NK cell markers, they might say its okay to try with just the Pred.

Personally, I started the Hydroxy in January and tried that month. No one told me not to - although they did say it takes a while to build up, but I just assumed I was fine to try in that time anyway lol. I had been trying for 3 cycles before they gave me the Hyrdoxy anyway so I just carried on.

The best thing you can do is contact your recurrent MC midwife. I email mine quite often and she is fairly good at responding. You're definitely not being silly, its very hard to take a break even when you know it might be for the best. Sending love.

Thank you for your detailed answers, it is really hard to take a break 😢

Im under NHS care. I had high NK cells and high activation so they recommended taking the hydroxy for 4-6 weeks to build up and then the pred and progesterone when ovulating. I haven’t had losses on the protocol as only just starting.

I really wish I could help you...Did they say not to try or not specifically? All I can say is try and make a decision, then you will feel a tiny bit better. If it's 'only' a month then maybe give yourself the best chance but I know that is torment and what I'm saying doesn't make it any better. If you don't mind me asking, were your losses early on? For example my first 3 were all at 5.5 weeks so I really feel my body just did not want to hold the baby, so the NK cells made sense to me.

My first loss was 7 weeks and the second 2 were around 5 weeks so very early

I've just had a look at your numbers from your post above and my total count and % for Lymphocytes are both higher than yours (389 and 17%) and I DID have an MMC on the protocol when it was just Pred and progesterone. It makes me wonder why they didn't start me on the Hyrdroxy right away. The only thing that mine are lower in is the activation marker, mine was 0.2%, but I'm not really sure what that makes.

Considering all that, perhaps it is best to wait as obviously I am evidence (and sadly so are some others) that you can have a loss on the protocol. If you've started trying I wouldn't worry because it can really go either way, but if you know that if you wait until the Hyrdroxy is working alongside the Pred you might feel most confident.

Morning all, how is everyone doing? Had a great Easter in France, although being in Champagne and avoiding the fizz was tough! I hope everyone was able to relax a bit.

No particular update, other than 1 humira down and (at least) one to go in a week's time. I made the mistake of reading some of the comments on the FB reproductive immunology board which said Humira didn't work for them, or even increased their cytokines and starting to feel a bit hopeless. Very conscious of being over 40 and that this very well may not work. Added to which my mother gleefully told me that my cousin's partner is pregnant with twins and due just after I would have been has added to the overall bleugh feeling.

Thanks for reading my rant and sending much love and luck to all x

Hi @Fletchasketch nice to hear you enjoyed your Easter break in France. I know what you mean about the forums, because it’s not an area that’s evidence-based within the NHS, we’re having to do the research ourselves and you’ll always get mixed reviews. It’s really hard. It’s also really hard when hearing other people’s baby news, even more so after a loss. I find the only way to ease this feeling is to distract myself and focus on my next steps in this journey.

Speaking of, I’m in my first round of superovulation. My scan was very strange, I went on cycle day 13 and my ovulation strips were starting to get darker, so I knew I’d ovulate 2-3 days after. However, the scan showed two medium sized follicles (13mm) so Dr S decided I shouldn’t trigger and just rely on the strips as I wouldn’t ovulate for another week at that rate. I however ended up ovulating as expected so pretty deflated because I listened to his advice and didn’t DTD as we normally would, especially when he said ovulation tests aren’t that accurate.

Lesson learned to listen to my body and the strip tests from now on! The clinic still believe the follicles were too small to have anything viable inside. I wonder if anyone had a similar experience with this?

Hope everyone else had a nice Easter break xx

@Fletchasketch Glad to hear it was a good Easter and well done for avoiding the champagne - I've definitely not had the healthiest few weeks and have had a few more wines than I probably should have. Those forums are really tricky - helpful but always going to have an element of negativity about them, I think people definitely speak more about their negative experiences than positives (which is natural) but just try and remember that it HAS worked for other people before and you could very easily be one of the people it works for in the future. I feel like in this group we're all a bit experimental in terms of evidence based results so we all just have to have the faith I guess. It is so hard though. I also find it really difficult to hear baby news, my close friendship group is bloody blooming with fertile friends which is very frustrating (despite my overall happiness for them). I definitely have the 'why me' feeling at least once a day.

@Newbeginnings22023 that sounds like a frustrating experience for a first go at superov. So did they basically think that even if you'd DTD when you had intended to originally it wouldn't have come to anything? Even if you'd done the trigger?

My 'break' this cycle has been pretty laughable - the only thing I haven't done is track my BBT for the first time in 2.5 years..! Oh, and I've been having tons of hot baths 😅I told this to my acupuncturist yesterday and felt rebellious. It does feel quite freeing to not be as strict with myself but I've still done all the ovulation sticks, timed BDing and all the meds and protocol. So not really a break but I'm meeting myself halfway?! I'm 6DPO today (ish) as not BBT.

Sending love and baby dust to all!x

@Hopeandfaith1990 oh I know the “why me” feeling all too well!

Dr S said I can DTD just in case but was adamant I wouldn’t ovulate that soon and therefore I ended up waiting, although the tests were dark! Frustrating is the word. But at the same time I know he’s going off the scan results, which is why this is so confusing. At any rate I know what I’ll be doing the next round - to time intercourse regardless! He also said he’ll up my dose to 10mg in my next cycle.

It is nice to not be too strict for sure! Xx

@Newbeginnings22023 Yes, I need to learn to stay off the Forums I think or at least learn to take them with a pinch of salt! Sorry to hear you had such a frustrating experience- it sounds like you know your own body pretty well though! Also interesting to know Shehata doesn't think much of the ovulation strips, as I've never used them (just went off EWCM) and would really like to not add any more complications to all the things we're already doing!

@Hopeandfaith1990 Yes, you're so right- there are so many people it's worked for, including people I know in real life, so need to hold onto that. Glad to hear you've been enjoying the (relative) freedom and hot baths- anecdotally so many people seem to fall pregnant when they're not actively trying, so you never know!

Trying and failing to keep busy at work this week. Next apt isn't until the end of May now, so just need to get over Humira jab #2 and hope it brings those levels down. In positive news, it is going to be a scorcher next week, so going to get all the vitamin D (lol!) and have a couple of bbqs.
Hope everyone is doing well x

Thank you to all who responded to this. We sort of had a month off tracking ovulation. Sex didn’t feel forced this month, we have DTD twice during ovulation window so I’m thinking f*ck it I’m going to take the pred & progesterone from tomorrow and see what happens.

I won’t have given the hydroxy the 4-6 week build up like the doctor said but I was finding it really hard to have a month away (even though I know that’s silly)