Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@VenusStarr thanks for the update. Think we may have crossed paths or just missed each other today. It is good that Dr edge feels optimistic and it must be so hard but sounds like you have a good plan.

I had a scan with today with mixed news. There is a heartbeat but baby is measuring small for my dates however I do have a tilted uterus so Dr edge said it was hard to get a clear image. Just trying to stay positive that a heartbeat is a good sign and hope that baby isn't slow growing just too far away to see clearly.

I'm good over here. Thanks for the nudge @VenusStarr .

I'm 17 weeks tomorrow and cooking well apparently. I don't feel great posting positive news when I know how much people are struggling. But I also know people find it helpful. I'm due to be 'discharged' from CRP soon. Dr Edge is blooming lovely. The last few scans I have shit a brick before going in. I keep fearing the worst. I know I'm very lucky to be in the position I'm in. But it's also tough going mentally at the mo as this is the same period we had our first loss in.

Wishing everyone some good luck in tests and scans. Xx

We must've passed each other @Privatemedical246 we were there for ages, dh's appointment was at 11, but they never called for him, so we saw Dr E first but that was about half an hour late. Got put after 1 in the end.
I'm sorry you got mixed news ❤️ so pleased you hace a heartbeat but the anxiety of measuring small is so hard. I hope that it's due to your tilted uterus and all is well. When are you back?

@KtAgs so pleased all is well. I can't imagine how you must be feeling ❤️ when are you next there? I always thought discharge was at 16 weeks but I've heard of a few people staying under his care for longer. To be fair they gave me a new protocol yesterday but I haven't actually read it yet.
Lots of love.

Good to hear from you @star2022 don't apologise! I'm glad you got away and had a relaxing time. It's so easy to become consumed with all of this and forget to live. So it's great you got away and reconnected ❤️
I'm sorry that you had a strange cycle though. I hope your cycle has settled now and trying naturally goes well 🙏
It does feel like we've just gone round in a big circle and achieved nothing. I know you get it and I'm sorry you do xx

@Ems123456789 good to hear from you. I'm sorry your rmc appointment was not helpful. They just don't offer any tangible help or tests. It's shocking how bad the 'care' is.
We've decided not to pgta. I genuinely don't think I'll get many eggs and then embryos. The extra costs are just too much, especially now we need icsi on top. Part of me wonders why we're doing all this for such a tiny chance but then I think I need to, so I can walk away knowing we did what we could. None of it is easy though.
Will be intersection what your other clinic says.

Interesting you say about amh and trying with the crp approach. Both Sr Edge and Dr Shehata think we can conceive naturally even with our history, low amh and now dh's poor sperm motility. But Dr E agreed yesterday that the stress of us trying naturally and it not happening was too much.

I forgot to say, our new ivf consultant is away indefinitely 🙄 so meeting a new one. Also even though my HP requested it and I had blood taken, the nhs didn't process my amh form so doing it at the ivf clinic next week.

Love to all xx

Totally understand the ‘knowing we did everything we could approach’ @VenusStarr I feel a bit like if I go to a new clinic I will throw the kitchen sink at it knowing I tried my hardest but if it doesn’t work I’m not sure I could handle any more IVF. We shall see. It’s never black and white is it.
wishing you all the best with your upcoming treatment and keep us posted on how it goes.

How's everyone getting on?

I had my baseline scan yesterday and had a pleasant surprise that my AFC was still 8, same as when we first did ivf. My right ovary had 9 follicles and my left 8! They also did my amh bloods for free. So just waiting for those and my husband's sperm dna frag results. Got my protocol consultation on 9 November and then we'll be ready to start. I've been researching natural modified ivf and feel alright if thats what is suggested. If my amh is still about 5 i think thryll let me do mild ivf again. Af would be due early December.

Felt a little bit of hope yesterday 💕

Hope you're all doing well xx

Hi @VenusStarr pleased to hear that your AFC was a good number. Sounds like you've got a good plan ahead. I really hope it's successful.

I'm okay thank you we had a positive scan after a long week waiting with baby grown and strong heartbeat. Just waiting now for another 2 weeks.

Can I ask people who are or have been pregnant before with the steroids treatment immunosuppressive. Did you sort of shield/mix less. I'm feeling quite anxious and thinking of just trying to reduce down what I do with work and mixing too much but not sure if I am overthinking it all. The clinic have said not to have my COVID or flu jab either. My job involves visiting different schools and mixing with different children all the time. My boss is going to support me with whatever I want to do. Thank you

That's great news @Privatemedical246 ❤️🙌 I'm so pleased to hear that.

That's interesting about the flu and covid jab, did they say why they don't recommend?

I can understand your apprehension about mixing. I think with the rise in covid and general bugs (I've had some sort of lurgy for about 3 weeks), I'd be inclined to pull back, not totally isolated but if you can have some adjustments in place that might be preferable. X

Hi, has anyone had a situation where you can’t tolerate pred medically and how did CRP handle that? Do they have any workarounds?

Hi @Wednesdaysotherchild not personally but I know he also uses hydroxychloroquine and used that more during covid. I'm not sure about other alternatives though.

@VenusStarr thanks, I’m already on hydroxy, plus intralipids and adalimumab (x4). I’ve done a lot of 2ww and 5 rounds of IVF on steroids (pred or dex) and every time I end up with palpitations and dizzy or fainting at slight exertion. But he was pretty firm I should take pred even so…

I'm sorry to hear that @Wednesdaysotherchild have you been under Dr S for a while? I'm coming up to 3 years now.
I know someone else on these threads was on Tacrolimus and had a good outcome, but I'm not sure if that was in addition to pred. @StillTrying10000 can you help?

I think @comingsoon786110 is also trying this.

My protocol includes gcsf now as well, it makes me feel very unwell though, but not sure if it would be used instead of pred, he's added it in for me as I've lost a healthy baby on the full complex plan (with clexane and lubion on top of all the other meds).

@Wednesdaysotherchild @VenusStarr yes we added Tacrolimus so I stayed on the Pred. To be honest when I came off the pred at 16 weeks I was soooo sick as it’s know to mask the symptoms of morning sickness so my 2nd trimester was my hardest. I guess we just have to accept the totally shit side effects on this journey and hope it all pays off. Does he suggest anything new on your protocol this time?

❤️ hope you're OK @StillTrying10000

@Wednesdaysotherchild what we're your results like? It was my nk cell activation that is the problem and its exceptionally aggressive and had a healthy loss so couldn't drop anything. There must be others who can't take pred. Are you on Facebook? There's a couple of groups on there - uk storms and rainbows and a UK Reproductive Immunology- lots of people are on immune meds, so might be worth asking in there?

Hi @Wednesdaysotherchild I don't take pred because of the side effects but my losses are in the second trimester so I don't have any problems getting to 10 weeks it's after that my difficulties start showing.

I was able to tell Dr S that the mental health side effects were too severe for me and as a fellow clinician and a Psychologist I was quite clear with him they were not something I was willing to tolerate. BUT this was also during the height of covid when he was quite skittish about people on pred. I had ovulation intralipids instead. And on that plan I had a healthy pregnancy so when they asked me to go on pred for this pregnancy/plan I could confidently say no because I've already been successful.

Pleased your feeling hopeful now @VenusStarr - lovely to hear. My AMH was similar to yours last year June (6ish) and I know the numbers don't mean much but I still looked for successful pregnancies with that amh on mumsnet for reassurance. Good luck with it all!

Katy

Hello! 2 MMCs following healthy baby - secondary infertility. First I assumed was bad luck, second got me worried and the tissue was sent for testing. In the meantime while waiting a loooooong time for results I got blood tests done and these came back with all markers clear apart from high nk cells and high activated nk cells in pregnancy. Prescribed by Dr Shehata progesterone, intralipids and prednisone from ovulation.

Today my local nhs hospital contacted me with my dna results from genetic testing... this took MONTHS to come back to me. Turns out the pregnancy had genetic abnormalities - tetraploidy, very rare and nothing I could have done differently was the diagnosis.

So in this situation - armed with this information - what do I do? Do I try without the steroid interventions, given the nhs said chromosome abnormality was the reason? Or do I throw everything at the next try and go ahead with the nk cell reduction plan?

Concerned about side effects of steroids under the nk cell plan so please let me know if anyone has experience that would help reassure me. I'm naturally very petite so any weight gain would be immediately obvious. Moreover, my grandma had osteoporosis and I'm concerned about steroids triggering that.

Hi @fleur89 , sorry to find you here and for your losses.

I think its hard to know and really it's your call. But I guess if you didn't take all the meds, something that you could consider is making sure eggs and sperm are in the best condition (the clinic recommends Coq10 for women and impryl for men and both following a Mediterranean diet). That might reduce the chance of a fertilised egg with unhealthy sperm or egg. And taking progesterone after ovulation might make the womb more 'fussy' so less likely for a aneuploid embryo to implant. I have had five pregnancies (one in progress, one healthy DS), 3 miscarriages and two of those had chromosomal issues and although it took me 10 months to get pregnant this time, I think the above (vitamins and progesterone) helped me. I believe i do need the additional meds as had an unexplained miscarriage at 19w with no chromosomal issues but I understand your reticence. The ladies on here are wonderful and a fantastic source of knowledge so hopefully can help too. Good luck with your decision making. Take care, Katy x

Hi @fleur89 I am sorry to meet you here and hearing about what you've been through. Unfortunately most chromosomal abnormalities happen by chance and the fact they happed do not rule out immune issues on top of that too so it’s incredibly hard knowing what to do. I had 2 losses due to confirmed random abnormalities (2 different ones, the first one was also a very rare one, triploidy) so we decided to try IVF with PGT-A testing and the single euploid embryo we had to transfer resulted in a chemical pregnancy. I also had 2 other MCs prior to those two which were never tested so unexplained, could have also been aneuploidy or immune issues so that’s when I started looking at immune issues and found to have high NKC count and toxicity for which Dr Sehata recommended Intralipids and Prednisolone.
I tried falling pregnant again on his plan for 3 months + superovulation and had no success at all. On account of this and also the costs for the intralipids every month, this month we decided to ditch all of that and go back to trying completely naturally without immunes or superovulation and I felt pregnant again straight away, but this is sadly ending in a chemical again, which is my 6th loss. I think from next month I may go back to the ovulation instralipids and Pred, but I may not be able to afford it and I really don’t like how the pred makes my body feel, plus it was having the effect of making my cycles longer, which is the last thing I want when at every failure I just want AF to arrive so we can go again asap!
So hard to know!

@clhiu I'm so sorry to hear about your recent loss ❤️ sending love

@fleur89 I'm sorry for your loss. It is difficult to know for sure, but I have highly activated my cells but a normal amount and have lost 2 pregnancies on full immunes - 1 was healthy, the other was a chemical so couldn't test. But they were ivf, similar to @clhiu I haven't been able to conceive naturally or with superovulation on the immune protocol.

My consultant is back soon, I thought she'd just left 🤷🏻‍♀️ so have changed my protocol consultation. I don't get my amh results til then. I feel ok though, I was reassured by my scan last week, it's not saying they'd all grow and my right ovary tends to be a bit lazy, but I still have follicles so that's good.
Think I'm ovulating today, back to normal from my cd8 ovulation. We've not tried though. I think I'm too scared to try now, don't want to delay things with the ivf. Have told my boss this week, as I'll need time off. Felt strangely emotional 😢

Hope everyone is doing ok. Xx

Just wondering, I've been very run down recently. Still taking hydroxy. I've had a cold for about 5 weeks now, started really badly with a sore throat. I thought it was covid but it's wasn't. After 2 weeks it went to a horrible chesty cough, dh thinks it was a chest infection. But now I'm left with a wheezy feeling in the back of my throat and every night I get stuffy nosed. I'm struggling to wear make up as my eyes are really sore and feel dry. It's so weird.
Has anyone had similar?

Thanks @VenusStarr ❤️. I’m really sorry I hadn’t acknowledged your recent updates and progress, I’ve just been finding things extremely tough this past month. Really pleased to read about you AFC, it sounds promising. Always good to have a plan and next steps too.
I haven’t got experience with hydroxy or any of the stronger immuno-suppressants and can’t say I heard about your particular type of cold doing the rounds lately, but I’d expect being immuno-compromised by the meds is likely to make even a seasonal cold worse than normal. I hope you can get over that soon, but glad it’s not covid x

You don't need to apologise @clhiu ❤️ I'm sorry you've had such a rough time these last few months. I found the constant up and down to the clinic for scans and intralipids really hard going and then to decide to stop and then you have a loss, its a really cruel and unfair process. X

@clhiu I'm so sorry about your chemical. That is so hard to go through especially with the rough time you have had up 💔 how are you feeling? I think it’s a good plan to go back to pred (and intralipids if you can afford it) next cycle, so you are giving yourself the best chance but not wasting money on SO which doesn’t seem to work well for your body. (Same for me). Thinking of you.

@VenusStarr so pleased your AFC was good and you’re feeling optimistic about IVF. Rubbish you’ve been unwell though, I’ve thankfully been ok so far on hydroxy, cold and flu wise. I got my Covid and flu jabs a few weeks ago - as eligible being on prednisolone. I’d recommend to go to your GP as important for you to be in good health, especially with your IVF coming up! Hope you’re taking it easy and resting up.

Ive finally started a new cycle after my loss in early Sept and just had my intralipids. I never conceive the first month trying after a loss but sure I will have my hopes up after ovulation anyway, can’t seem to help it! Sending love to all xx

How are you getting on in your tww @Lily1990 hope you're feeling OK.

We got some better news today, dh's sperm dna fragmentation has slightly improved 🙏 its 14.5% from 16.4% he's back on impryl now too (that was on wellman but swapped it now), so hopefully that and icsi will help us.
Got our protocol review on Monday so will find out my amh and then we should be good to go. I'm ready to start now. Really hoping my cycle plays ball and I can get a cycle in before Christmas (af due any day).

Hoping all is well with everyone ❤️ @clhiu @Deerdancer34 @star2022 @comingsoon786110 @Privatemedical246 @Ems123456789 @HopefulH @Danni8 @fleur89 xx

That’s good news @VenusStarr keep us posted!

I had a consultation with the ARGC who have recommended a monitoring cycle of my natural cycle to look at my natural hormones, plus Karotyping on both of us to check no genetic carrier issues and also updated immune tests. They seem quite thorough. Hopefully we can then consider more ivf. They seem more organised than previous clinic!

In the meantime I had some blood tests after my not so helpful nhs recurrent miscarriage appointment and I’ve been called back so they must have spotted something. Appointment isn’t until 5 Dec.

waiting game at the moment.

hope everyone else is doing okay.