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

My consultant also isn’t a fan of PGS, and I know a few IVF clinics near me don’t offer it. They say it’s because it’s not evidence based I think, but neither is most of the drugs we use but they’ll give us those. Never made sense to me.
I’m so glad you’ve had the report, together with your plan of action off Mr S hopefully everything will come together for you 🤞🏻
Thank you for letting me know, I to have tried the genetics lab but had the standard “we only speak to HCPs” back - only asked how much longer they’d take. I’ll keep chasing and hopefully have my answers soon xx

I'm glad you've got your results back @Everhopeful35 but I appreciate its hard finding out the sex. For all my babies, their chromosomes have been tested so I know the sex for each, two girls, one boy (although the last was a triploidy so had both XXY if that makes sense?) In some ways its harder to know but I also find it helps me to grieve for my babies as it makes them more real and acknowledges my pain when society says all that rubbish about before 12 weeks etc. Its hard both ways.

I know it feels like a total uphill battle to have made babies with chromosomal issues (I've had two so far) and have immune problems too but I've read some research about it all being connected. That's why Mr S gives progesterone before a BFP because it helps make the uterus more 'fussy'. I am in my fourth cycle of trying and if we don't fall this month, it'll be the longest its taken but I take some solace in the fact it might be to do with my uterus being more selective. Fingers crossed anyway.

And in answer to your question- we're getting a girl beagle ❤😊
Xx

I got my BFP today. I'm pleased but much more scared than I thought I would be. Xx

Congratulations @KtAgs everything crossed for you ❤️

Amazing news @KtAgs!! Fingers and toes crossed for you xx

@KtAgs that's wonderful news, keeping everything possible crossed for you! I hope this is your rainbow baby xx

Congrats @KtAgs such good news to hear. And a beagle puppy! Xx

Fab news @KtAgs - praying this is the one 😊 Thanks for your sweet words below, by the way. Really appreciated x

@KtAgs, congratulations!! Amazing news! All crossed for you to take this baby home. Big hugs xxx

Hi everyone, I've dipped in and out of this thread for a while. I've had 3 losses and all my initial rmc bloods were normal, so I had the nk cells biopsy which was also normal, so I was prescribed cyclogest to take from 7dpo.

I'm now 6+2 weeks pregnant, but had a big bleed yesterday despite being on the progesterone. I'm not confident this is our take home baby. I'm under a Tommy's clinic already but to be honest, they've just consistently fobbed me off - I asked for my rmc bloods to be repeated in pregnancy which they agreed to but are now stalling and said yesterday to just wait and see how this pregnancy pans out. I feel really let down - how can I be under a specialist team and they just fob me off? This will be my second loss under their 'care'. They're not even offering any scans or appointments at the moment, but I know the Coventry one is open and functioning as normal.

We're at a bit of a loss as to what to do now. I've got a scan at epu on Friday. I'm asking my GP for a transfer of care to Professor Quenby at Coventry. Initially we thought we couldn't conceive so we're on the fertility pathway and were due to start ivf this month. But the reality is, we have conceived 50% of the time since last January. My first pregnancy took 16 cycles but every one from then on has been in less than 2-3 months of trying.

My husband is reluctant to try Dr S - particularly as he's likely to be made redundant very soon. How likely is it that I do actually have immune issues if all the standard tests have shown up nothing?

I've never had a baby tested as I've miscarried naturally, so if this one is ending, I'll make sure that we do get that done - but even if it shows a chromosomal issue - isn't that just relevant to this pregnancy, how likely is it that all 4 pregnancies are related to that?

Sorry this is long, I just feel very let down and lost xx

@VenusStarr hi . What a traumatic time. I am keeping everything crossed for you.
In answer to your question regarding testing, I thought I’d explain my history. I had 4 losses prior to treatment with Dr S. one of these had been analysed and was a trisomy issue but the others were too early and miscarried naturally. I had various tests done by Axa under my health plan - they don’t cover infertility but do cover recurrent miscarriage.
The tests were after miscarriage 3 but after no. 4 I went to dr S. it was around 18 months after the Axa tests and despite the costs he insisted I be retested many of them because of my age (I was 42 at the time). I asked if this was necessary and he said he had his reputation to consider!.
His bed side manner is appalling but he does get results.
The Nk cells rests came back as high. I started his plan, miscarried a further time then had success with my daughter.
Maybe if you’re in your 30s he won’t insist on retesting. I would recommend him.
Fingers crossed for you xxxx

@VenusStarr I’m so sorry you find yourself here and that your care has been substandard. Reassurance is key in rcm.
Not sure if you are aware of the difference in the testing offered but Mr S tests peripheral NK cells, Prof Quenby does uterine NK cells. They are not interchangeable.
I’ve always been reluctant to see Mr S, as I promised my consultant early on in my journey (after my second mmc) that I wouldn’t see a private dr and pay thousands for treatment that isn’t proven. Now after my 5th, I’ve exhausted all possible NHS drug treatments (Clexane, progesterone, aspirin and Pred) I’ve finally bitten the bullet and going to see Mr S in a few weeks. For me, the deciding point was - I didn’t want to be in the same place in 6 months, having another mc and there being options unexplored. However, having said that the clinic is very expensive and I am yet to read a comment about a lady tested there who either doesn’t have elevated NK cells or aggressive ones (but I’m sceptical about these things).

As for chromosome issues, I was told by my consultant that in rcm it’s not a common cause. How true this is I don’t know. But definitely push for it, in my experience I’ve never been offered it unless I’ve asked - not even after my first mc 5 years ago at 15 weeks. Which now angers me so much as back then I thought it was just bad luck.

But for now, think positive and take care of yourself. I hope Friday gives you good news and all of the above it irrelevant. I have known ladies to have big bleeds early on, think the worse and then go on to full term. 🤞🏻 Xx

@VenusStarr I'm so sorry to hear of your losses and the stress you are currently going through with your care. I have to agree with@Jellystar23 in that I was highly sceptical of seeing a private immunes doctor and only wanted to tread the 'medically proven' path. But after seeing Dr Raj Rai at St Mary's and ARGC for IVF (the latter of which giving me every drug under the sun), I had another miscarriage. This was a twin pregnancy but one disappeared at six weeks, so only managed to genetically test the remaining twin, which turned out to be Trisomy. But in my mind, there are still no explanations for the two I lost last year, the chemical and the second twin. Is it statistically possible that they could all have genetic issues? Probably not. That's where I got to in my head and why I went to see Dr S. As @Naticle says, his bedside manner is bad but he's the first person who gave me a solid reason as to why this might be happening (aggressive NK cells and very high TNF alpha). I'm still sceptical as I haven't yet started the treatment, but I'm willing to give it a try. I don't know if this helps, but sometimes it's reassuring to hear other people's stories to help choose the best path for you. But I really hope you don't need this advice and this is your rainbow baby. Wishing you so much luck for tomorrow x

@Jellystar23 If it helps, a friend of mine was under Dr S and she didn't have any problems with NK cells. It all came back clear and he actually said to her it don't know what the cause is, but we'll keep trying different drugs/treatments'. When I heard that, it made me trust him more.

@Everhopeful35 ah yes that is very reassuring. Thanks for sharing! My husband keeps telling me that not everyone who has seen him has told their story too.
When it’s too late, I’ll never forgive myself for not trying if I don’t

@Jellystar23 Glad to help! I feel the same - I needed to see Dr S, as I would have regretted it if we had had another miscarriage and hadn't seen him.

Quick question for the group, actually - as part of my treatment, Dr S is suggesting a 'loading dose' of Hydroxy before my next IVF transfer. He says this is a stronger dosage, rather than take it for six weeks like he normally recommends. Has anyone else taken it this way? I'm nervous and would rather take it over six weeks, even if it takes longer, for the reassurance that it's well and truly in my system.

@Everhopeful35 a few people were on loading doses earlier in the year and tolerated it well I think. Personally, i like the hydroxy. It's reduced some of my other autoimmune symptoms. It's prescribed for people with lupus in higher doses and i spoke with a rheumatologist who assured me of its safety.

Sorry to hear you're bleeding in this pregnancy @VenusStarr. That must be so worrying for you. I hate that limbo and I also have everything crossed for you. Many women have bleeds and their pregnancies are fine. I hope that's the case for you.

Its also totally normal to want to know what to do next if it doesn't work out. I'm sort of 'lucky' in that I know what the state of play was chromasomally for all my babies. First was fine but the two chromosomal issues I had back to back - trisomy 22 and a triploidy - are supposedly both rare and yet both happened to me. Dr S looked really surprised and said 'That's really unlucky' with emphasis. I said I hate it when people say that and that I found it difficult to accept they aren't all connected. He said they almost definitely were but we didn't know why. That was music to my ears. He was the first to say that.

What I'm trying to say (clumsily) is I've found it helpful knowing more (but not everyone will) and it was a relief in some ways that I knew that none of the treatment might have helped my lovely babies with problems. And secondly, Mr S isn't for everyone but he's been helpful for me. I guess you have lots of options whatever the outcome for you and your baby. I'm going to hold onto some hope for you until you know more ❤

Also, for those that are interested, here is a recent presentation from Mr S himself about thrombophillias: vimeo.com/435661013

And Ari Coomarasamy about progesterone: vimeo.com/435660811 this is particularly interesting for those thinking about the impact of progesterone on euploid ('normal' chromosomes) and aneuploid pregnancies ('abnormal' chromosomes).

I watched them all because I love the knowledge but some of them - particularly Sian Quenby's one are like listening to another language!

@Everhopeful35 I am on the sixth day of taking the hydroxy. Had a loading dose of 800 mg for 2 days, then went on to 400 mg. No side effects whatsoever (apart from really disliking a glass of wine I had at the weekend). Like @KtAgs my autoimmune symptoms have improved quite a lot, I no longer have pelvic pain, joint paint or rashes. I'm very happy with it at the moment.
@VenusStarr I'm so sorry that you feel this pregnancy is in danger. I'll pray for you that everything goes well for your scan on Friday. With the NK cells, the biopsy is different from the tests that Mr S does. I asked him why he doesn't do a biopsy and he said that the NK cell levels fluctuate all the time, which , according to him makes the results unreliable. He explains that he puts the cells in a state of pregnancy when he tests and then watches for NK hyperactivity. Very clever. Then he tries different meds on it to see which one reduces their activity.

@KtAgs congratulations on your bfp! I really hope this is your rainbow baby. I’m currently on the 2WW, although had a virus around ovulation time (tested for coronavirus but negative) so not sure if that might negatively impact my chances.

@VenusStarr I’ve been under NHS, a private fertility clinic local to me, and St Mary’s Miscarriage Clinic and am currently under Dr S. I think if anyone is going to help me it will be Dr S and I wish I had found him a long time again. I have one live child, my nearly 6 year old daughter, and then 6 miscarriages (first and second trimester losses) after this. The most recent of these was with Dr S so he has now added Hydroxychloroquine to my plan. At Mary’s did say to me there was probably an immune problem based on my history, but that they couldn’t treat it as it wasn’t in NICE guidelines yet. I have factor v Leiden so they could only offer clexane and aspirin for that and extra scans. I had already had clexane in a previous pregnancy where I lost the baby, and as I have a live child and it is a genetic blood clotting that would have always been there, Dr S said this isn’t the reason for my losses and wouldn’t prescribe me with Clexane. I’m happy with this as there was recent research that showed this and he now says he no longer tests for this in the clinic as a reason for recurrent miscarriage. 2 of my babies have been tests and there were no chromosomal issues identified, plus Dr S said that with recurrent miscarriage it’s rarely a chromosome issue. I hope this helps. Dr S is very expensive and that is very difficult (and depressing!) for me, but I do think it’s my only option. Hopefully it all pays off!

@hrtbrk2 @Everhopeful35 @Jellystar23 thank you for your advice/ words of wisdom after my last post & also gentle congratulations @KtAgs I really hope this is your rainbow baby 🌈

Also @Chickjen thank you for putting a different spin on it, after an emotional few days (with lots of hormonal tears!) we decided to give SO a go until we have done 6 cycles 🤞🏽 Also huge congratulations on the birth of your baby! When did he/she arrive? What are they called? I hope labour went smoothly? Your story gives me hope 💖

So I’ve had my fifth follicle scan today & despite last month on 10mg letrozole being a good response, this month was not 😢 I had one follicle that Dr S thinks I might ovulate later in my cycle but I’m not so sure. He recommended I track ovulation and try naturally if I do ovulate. If I do ovulate, I have to repeat 10mg letrozole next month. If I don’t ovulate, he wants me to try Gonal F injections next month and has already given me the prescription. He said I need to track ovulation and only come to the clinic when I’m about to ovulate so that he can get a true reflection of how I’ve reacted. Next month will be our sixth super ovulation cycle (although Dr S did say that with 2 unresponsive cycles, he only would count it as 4 🤷🏻‍♀️). I told him I was feeling deflated and wondered what our next steps would be. He agreed it was a good idea to the start the NHS IVF process as it may take some time to get started, whilst we continue on this path. He stressed that IVF wasn’t a done deal and said he’d had couples sat in front of him after 10 failed transfers in which good quality embryos were put back 🙈 He did say we have to do what’s right for us & we had already kinda decided on IVF - still very emotional about it all and feeling like we’re on an impossible uphill climb but I know I’m probably not alone in this xx

@KtAgs, gentle congratulations!!🌈

@Wishing5tar oh I'm so sorry you've not had a good response and added to the heartache, especially as you were unsure about trying this month. From an outside perspective it just seemed a shame that as last month looked so promising not to give it another try as you were so close. Did Mr S offer any advice why this might be? We naturally ovulate from alternate ovaries so if last month was the left side and this month right, for example, I wonder if that could be a factor? It might be worth knowing in case you do go down the IVF route so you can time it for the stronger side. I hope you do ovulate this month though so can still try 🍀
George is 5 months old now and a 'normal' baby. I say this as that is exactly what I wanted to hear while I was trying, no health issues that I am aware of from the treatment. One thing I was wondering to comment recently though with the talk of adoption and surrogacy, is that my whole life I have been curious to know what it's like to give birth and breast feed. Well, I had a caesarean because he was breach, and he absolutely refused to breastfeed, so I still don't know! Even his name started just as a nickname as my original due date was near St George's day, so I don't feel we even really sat down and picked a name. What I'm trying to say is, we have all these dreams for having a baby and how it will be and it doesn't always pan out that way anyway, if going down a different route ie IVF/adoption/surrogacy/donor etc is what it takes then maybe so be it, (I say this in a general sense to anyone reading not anyone's particular situation) the end result is still the same, a little needy person to love and look after. I'm sorry if that sounds smug. I am still pinching myself every day and sleeping with the light on so I can check he's still here 100 times a night 🙈 I also feel incredibly guilty it has worked for me when others are struggling.

@VenusStarr sorry to hear your situation too. I am one of those people who had a big bleed around 6 weeks and it went on to be ok. It was a sudden rush of red blood which tapered off after the initial rush to just a little more than spotting which then lasted a day or so. I hope it will work out ok for you too 🤞 although while you are looking at other options I wonder if you can be referred to Mr S on the NHS? He practices out of Epsom hospital I believe. Maybe worth looking into as an alternative if you have already had the NK biopsy and it was clear.

@KtAgs whispered congratulations for now, fingers crossed for full congratulations soon, I hope this is the one for you ❤️

Thanks everyone for your lovely messages. It still doesn't feel very real yet. Off for intralipids today. @Chickjen lovely to hear about you and your boy. You give great advice too!

Sorry about your response @venusStarr, it must be gutting. If you do track ovulation, I was using temping and sticks together for the first time this month and the temping really helped me pin point ovulation much better. I use a femometer. I really hope it works out for you Xx

@Chickjen you’ve hit the nail on the head with my view re surrogacy and wanting to give birth and breastfeed (also feeling the baby move), so thank you for sharing your story. And also, please don’t feel guilty. Stories such as yours help us have hope that there is an answer/treatment. Your comment about the humira treatment plan working for you is what gave me the kick I needed to book in with Mr S ❤️

@KtAgs - hope all goes well today xx