Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1 @Hippo20*

[Everhopeful35]

Thank you, ladies, for all your incredibly sweet messages. After 18 months of failure after failure, this really has felt like the final straw and it's been a tough weekend trying to make sense of this. One of the things I can't get over is that I have a good AMH (ovarian reserve) and produce a lot of eggs through IVF - 15 the first time and 19 this time - and I also end up with good graded blastocysts. This round, I had a 4AA, which is the top grade. But yet they're all abnormal. I don't know whether to see this as seven miscarriages avoided and keep going the IVF/PGS route until I get a normal one, or try again naturally. But I'm scared to try naturally now, as we are clearly making terrible quality embryos time after time 😔 It's so hard to know what to do! My husband thinks we try naturally this month now that the Humira is in my system and see what happens. But I'm terrified. x

[KtAgs]

We're about to be chucked off this thread so I've created a new one here. I've tagged as many of you as I could remember. Please tag anyone else who wants to be tagged or that I've forgotten.

www.mumsnet.com/Talk/miscarriage/4048097-Immune-NK-Issues-aka-Pred-Thread-no-26?watched=1

[Whyisthistakingsolong]

@Everhopeful35 I am so sorry to hear this, especially with recently having to take humira. The nurses told me it stays in the system/has an effect for 9 months+, so at least you have some time to think about next steps without having to take it again.
As others said, be kind to yourself.
Reading that article and Mr S's stance makes me think you should definitely still have hope. I would get an appointment with Mr S to talk options? X

[Hazlet2]

@Everhopeful35 I'm so sorry to hear your news and wish I could offer some advice. Thinking of you and your partner. I had heard about this theory of PGS testing being questionable but until reading that article that @KtAgs just posted I hadn't really understood. It potentially offers some hope. But take some time for yourself to process like the others said. Sending love xx

[Jellystar23]

@VenusStarr sorry slight typo it’s CHI. It’s called chronic Histiocystics Intervillositis, my immune system is attacking the placenta and causing it to clot. There is no test to prove it, only shown on examination on the placenta after birth but he said it is rarely picked up after miscarriages because the placenta is so small. He told me he is sure I will need hydroxychloroquine throughout my pregnancies, not just the initial trimester. He was also quite annoyed and upset at how I’ve been treated (investigation and advice wise) by the NHS.

@Everhopeful35 I’m so sorry to hear your news. Like the previous replies, I have no experience with IVF and PGS but I have been told in the past that PGS isn’t the answer for us recurrent miscarriers (I havent read the article shared so unsure whether this contradicts the advice I was given).
Take a few days to come to term with your news, and then revisit all the advice you’ve been given from your clinics. And I hope someone comes along soon who can give you some more personal advice xx

[Lalaifa]

@Everhopeful35 I am so sorry to hear this. It must be soul crushing to hear those news. Please, like KtAgs said take your time and be compassionate with yourself. Like her, I dont have experience with Pgs or IVF, but that article was interesting on the validity of PGS testing. I understand it is too much to take for now, but I hope you come to the right decision with you partner. We are here if you need to talk. Lots of courage and hugs X

[KtAgs]

Oh I'm so sorry @everhopeful35. That must be really crushing. I can't offer any advice really on PGS. My last two pregnancies were abnormal and its really hard. But I do think my husband seeing the urologist, following that advice and me following it Started with the egg and following some strict nutritional advice given a few pages back by some lovely ladies may have helped. Obviously its too early to tell for this pregnancy but I have everything crossed for it. I think my situation has been a combination of immune issues and abnormal embryos so I feel for you I do. It can seem like there are too many hills to climb sometimes.

Also, draw your own conclusions but have you read this? www.thecut.com/2017/09/ivf-abnormal-embryos-new-last-chance.html
Your post reminded me of the article.

So I would pause and show yourself compassion. Be as upset as you need to be for a few days and revisit how you feel with your husband. I'm sure someone else will have something to advise and come back here whenever you need to. We're here. Sending love x

[Everhopeful35]

Hoping someone can provide some hope, as I'm feeling pretty crushed today. My husband and I found out yesterday that all seven of our embryos from two rounds of IVF are abnormal. I've already started Humira, thinking we might be transferring next month. Now we have nothing 😔 I'm not sure whether to go back to trying naturally, as I know we can conceive, or stick with IVF and PGS testing. I'm also not sure now whether my issue really was immunes or if this points to the real problem - really poor embryos, probably through bad eggs and sperm (we've had karyotyping and that was clear). Any advice much appreciated x

[VenusStarr]

Thank you @Whyisthistakingsolong I paid to have my amh tested in February as my Trust doesn't offer it. I hope that it's accepted and I won't have to redo.

I'm going to contact my GP this week @Hazlet2 regarding the other blood tests.

I don't know if anyone has experience or can advise but I'm still passing dark, almost black clots - my bleeding has been minimal anyway, but it's 10 days since I had medical management and I've definitely passed the sac, my pregnancy tests are very light but not negative yet. I also am very tired - I went out yesterday just for a wander round the shops and felt dead on my feet after an hour - I came home and slept for nearly 3 hours and slept again properly last night. I don't know if that's normal or not - I've not had it following my previous losses.

I'm so pleased you feel it was worthwhile @Jellystar23 - what is HCI? I'm just collating all my letters and documents to send over to Dr S - I managed to get an appointment for 4th November.

I already have a cyclogest repeat prescription at my surgery - good job as I can see how this is going to start adding up quickly!

[Jellystar23]

Thanks @KtAgs. 100% agree with the savings, however small! Perhaps I need to be a little more assertive next time 🙈

[KtAgs]

Hi @jellystar23, I get cyclogest from my GP. And Mr S usually prescribes for 3 months I think. I don't think he's mad keen on people getting meds elsewhere but hey we gotta save money where we can right?

[Jellystar23]

Hi all. Hope everyone is ok. I saw Mr S yesterday and I’m so glad I took the plunge and booked the appointment. He thinks I have a condition called HCI and said that I would probably continue to miscarry without treatment. Feels so good to not be fobbed off with the “just keep trying” attitude that I’m sure most of us have had from NHS consultants. Had a long list of bloods too to check everything else out just in case.
One thing I’d like to ask you all is if anyone gets any medication not from the clinic? I can get hydroxychloroquine much cheaper via work (even if I factor in the £20 prescription charge) but when I brought it up, they didn’t seem keen.
If you do get private prescriptions from Mr S, does he prescribe monthly or does he put bigger quantities on the prescriptions? TIA xx

[HoldingOn2Hope]

Most gp's and even nhs consultants won't do the AMH test, not sure why, maybe they don't have a budget for it. My nhs consultant did most for me including karyotype but couldn't do AMH. Had that done with Dr S xx

[Hazlet2]

Hi @VenusStarr I had all the standard blood tests done via my gp incl liver and kidney function etc - some of them he queried the need for, like vitamin d, but he said I had good reason to get them on the nhs with what id been through. I basically read the list of everything out, said I didn't wanna pay ridiculous amounts of money for such standard tests, and he said yes to most! I didn't get amh either (I think as I'd recently had that done with RM clinic). Good luck x

[Hazlet2]

@HoldingOn2Hope so sorry, UTIs are the worst anyway let alone after all the stuff you've been through. I used to get them a lot, I found mint tea, lots of fluids and getting rid of caffeine helped a bit. Hope you feel better soon x

[Hazlet2]

@everhopeful35 thank you for your advice. Yeah it’s a minefield, but it’s good to hear that although you’ve had varying experiences at both clinics you still have faith in both. Im sorry about your last pregnancy you mention at argc. it’s frustrating that the doses are so different across the two. Was that a natural or IVF pregnancy? I asked about steroids and she said I didn’t need them. And if I got pregnant I’d have intralipids & ivig.
Wow that’s an amazing saving!! She said to me that each injection is 800 (I would have 2 like you said - and 2 weeks apart) and then i test again, and may have to do 2 again depending on levels, so that’s 2 x1600 😱. She did mention them sending to a pharmacy of my choice but I wasn’t very clear on that, whether that would mean a saving...Maybe I misunderstood or she was vague for a reason! Tbh she was very rushed and wanted me off the phone pretty quickly. Slightly annoying. Good to be efficient but felt like I had a few unanswered qs, you really have to read up on all this and be your best advocate when they're telling you the results and plans - even though I have done a lot of reading up, I still felt confused! Thanks again, this is really useful x

[HoldingOn2Hope]

I was given antibiotics for the uti, it's still causing me grief. Was told to use cyclogest back door 😑 and that's now caused me constipation tmi sorry! Oh I'm fed up with it all today 🙄 DH asked why I was feeling crap and I wanted to give him the meds, the jabs and the pessaries and say have these for a year or so!!!!!

[Whyisthistakingsolong]

Hi all. @VenusStarr I'd also try to get AMH tested too, that's been missed doff by my GP. Good luck!
@wireless77 @HoldingOn2Hope, I hope your UTIs clear up!
I got my diagnosis from Mr S today.. Normal NK levels but high activation and high TNF Alpha. He put me on Humira and hydroxy.
@Everhopeful35 where did you get yours from?? I tried lots of pharmacies inc. Boots & asda and none have it.. Only had joy with the Wimbledon hospital that the clinic recommends but that's £400 and a bit of a drive!

[Everhopeful35]

@Hazlet2 Well done on getting a diagnosis - hopefully that's a step in the right direction! And I know what you mean about feeling relieved. Both Dr S and ARGC said I needed Humira, so I felt like it was the best thing for me to do. Re ARGC versus Dr S, it's a tricky one. I feel like I've had good and bad experiences with both of them so far... You're right that Dr S is far more full on in terms of medication. For example, in my last (failed) ARGC pregnancy I was only on 10mg prednisolone and Dr S's minimum dosage is 25mg. ARGC have also told me that if Humira works for me, I won't need Hydroxy, but Dr S is recommending a loading dose of Hydroxy regardless of how I respond to the Humira. It's a total minefield, but ultimately you just have to go with the doctor and treatment course you feel most comfortable with. I've decided to let ARGC control the IVF and Dr S control the immunes, just because I think I personally feel more comfortable with more medication than less (I'm a nervous wreck and don't want to leave anything to chance!). One piece of advice I can give you to try and save some money is to ask ARGC for a prescription for Humira. I was quoted a cost of £800 from them for two injections (which, of course, would be £1600 if you need to repeat the course - and some people do need to). ARGC told me they provide and administer the injections themselves. Dr S, however, gave me a prescription and I got my local pharmacy to order it in, who charged me £250 for two injections. It's a HUGE saving, so don't hand over your credit card to ARGC without asking whether you can get a prescription instead. Please feel free to PM me if you need any other advice re ARGC. They do seem to charge the earth for everything, but I will say that they have amazing success rates and i think that's because of the close monitoring all the way through (for example, the two blood tests and scans a day in the second week of IVF). I can't give you much info on Humira so far as I've only just started it, but other than the very painful injection, I haven't had any side effects so far! x

[VenusStarr]

That's good advice, I will contact my GP, thank you @HoldingOn2Hope. How are you feeling with your uti? Xx

[HoldingOn2Hope]

@VenusStarr it sounds like you have a plan. Maybe ask your GP if they can test your thyroid levels and also the Fsh and Lh levels too - although usually advised to have these done on your 2nd period post mc. Dr S will want all these up to date and getting them done from GP will save you some money on that initial consultation. Oh and vitamin D, liver and kidney function tests. My GP just did me a MOT of bloods I sent them the list and asked what they could do. Hope you're doing ok xx

[VenusStarr]

Hi everyone. We've decided to book in with Dr Shehata, my dh is a bit skeptical about it but is willing to give it a try. I feel like I need a plan and although professor Brosens said we could try steroids next time, it all feels a bit wishy washy and uncertain for my liking. It would mean we need to ttc on our own and if I get pregnant, then we'd discuss treatment and I don't think I can go through this again - it just feels like it's playing Russian roulette. I know there's no guarantees with Dr S and his plan, but mentally I feel more secure following a thought out plan and feel supported in a medical sense before we even consider trying again. It could be I have all the tests and he finds nothing (although I am convinced he will find something) - 3 of my miscarriages have been also carbon copies of each other.

I'm going to test over the weekend, as soon as I get my negative, Tommy's are willing to redo my aps, anti coag etc bloods. Plus we have our blood karyotyping and test on the pregnancy to come back, so I feel comfortable with the November timeline.

Is there anything I can do in advance test wise that might save us a bit of money, or anything to help me prepare? I'm going to request all my medical notes too.

Hope everyone is OK xx

[Hazlet2]

Hey all, hope everyone's doing ok - sorry to hear some of you having a tough time of it lately. Just messaging as have finally had some results back from immune testing (Chicago tests) at argc and I have very high cytokines - TNF alpha. They are going to prescribe me a humira course and we're still going to try naturally in the meantime, then maybe move to IVF. @Everhopeful35 hope all's well. I think you're also at argc / have been with them? Being a complete newbie to all of this (but also feeling weirdly positive they've finally found something that we can treat) do you have any advice? Am also just wary the methods seem to be so different depending on the clinic you're with, and dr S it seems does things completely differently and from ov! Anyone else on humira? Appreciate any advice /thoughts you may have! Also really eye watering on the bank balance side of things and this is only the beginning 😂 Xx

[Wireless77]

@HoldingOn2Hope, you did the right thing! I personally would take the antibiotics if you had proteins and white cells, and have symptoms as well. But that's me and you'll have to do what is best for you and of course listen to medical professionals. In my case the dip test did not show anything twice, but culture came back positive of infection. If symptoms allow, wait for the culture to come back and don't hesitate going back there if it gets worse. Should you get back pain, temperature, shivers, go straight to A&E as it may have gone to your kidneys. Otherwise drink a lot to flush out any bacteria, keep using the hot water bottle and rest. I hope you will be feeling better very soon! X

[HoldingOn2Hope]

@Wireless77 thank you for all that info. I managed to get into a walk in centre today and saw a really helpful nurse who said it doesn't seem like an infection but I have raised proteins and white cells but not nitrates. So she's giving me a prescription incase I need antibiotics but told me to wait as wants to send sample off. She's also had to do a preg test which of course was negative 😑 but I am only a couple of dpo. She felt awful doing it but said to be safe she would rather do it.
Hope everyone is doing well x