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

@HoldingOn2Hope what?! That is crazy - I’m actually so annoyed for you 😩 like @KtAgs said, is there anyway they still have your baby’s remains and you could arrange for them to be sent to another lab or pay for private testing? What a bunch of arseholes! Do they not realise there is actual human beings on the other side waiting and hoping for some answers 💔

Interested to hear why Dr S has changed things up for you Katy?

@NICK7nick7 September isn’t too far away so try and stay hopeful ☺️ I’m crossing everything that we don’t get a second wave 🤞🏽

I’m seeing lots of pregnancy announcements at the minute like ‘oops we clearly didn’t use enough covid protection’ 🙄 and it just pisses me off - so many people had fertility treatments cancelled and people are mocking the fact they had sex in lockdown and didn’t use a condom and miraculously got pregnant 🤦🏻‍♀️

So as Dr Jan predicted, I haven’t ovulated this month 👎🏽 maybe this is why my hormones & emotions are all over this place! 😂 I’m on CD 21 today and nothing yet so just waiting for AF to arrive. Hope everyone is okay xxx

Thank you for all your msgs I just feel so helpless today. I've tried ringing the lab they won't give me any info so waiting on the bereavement nurse who is involved to call them. Geri called me for an update as she knows I had that appt today and has said Dr S won't be happy about that, I've said to her I'm not either but can you pre-warn him not to give me the 'ifs' and 'buts' when I see him on Monday!

@KtAgs that's interesting, does that mean you will start intralipids from ovu? That's what ARGC do too. I wonder whether he will suggest that for me.
@Wishing5tar what meds/dose are you on? Sorry if you've already said before. Did you go for a follicle tracking scan?

@Jellystar23 I'm really sorry that you're going through this too. It really sucks :( will there be any testing on your beautiful baby? Virtual hugs 🤗

@HoldingOn2Hope I doubled my dose to 5mg this month but when I had my follicle scan he said I’d had no reaction and had to abandon my cycle. Dr Jan said if I happened to ovulate on my own later I could take the steroids so I’ve continued to temp but no sign of ovulation yet 🤷🏻‍♀️ I have to double again to 10mg next month so hoping something happens 🤞🏽

Crossing my fingers and toes that the bereavement nurse is able to get through to the lab and get you some more info 🤞🏽 I’m sure Geri will keep Dr S in check and remind him to be sensitive to the situation!

Oh ladies some really irritating and frustrating updates on here this week @HoldingOn2Hope I'm gutted for you - it really annoys me how those just interested in 'the science' forget that there is an actual mother and father dealing with these situations behind it all. Where do you go from here?

@Jellystar23 welcome to the feed although I'm sorry too that you have to be here at all - you might find that someone like dr s would suggest pred or hydroxy until much later. I had a 2nd trimester loss at 16 weeks and have to continue hydroxy (if I ever get pg again!!) throughout to 40 weeks and the pred until I think 20 but I think that's more precautionary than because they know it will make the difference.

@KtAgs I wonder if the ovulation intrallipids are to mimic the effect of the pred if he takes you off that - the mental side effects of pred are quite serious so I think if you've mentioned them to him he's probably thinking this may be a 'gentler' method of reducing your nk cell activity without all the horrible side effects. Albeit a very expensive way to do it!! 

@Wishing5tar why did you have to abandon? Were there no dominant follicles? Sorry you've had a funny month - perhaps you'll have a super charged one next month!! Fingers crossed

Hi ladies, sorry for the radio silence. Been trying to get over the miscarriage, but it seems to have knocked me for six. Really not coping with this one as well as the last two. I've now had a consultation with our consultant at ARGC and they have various recommendations. They are really pushing Humira for the next time we try but also mentioned hydroxy as an alternative. Anyone know the difference between the two? I've read Tor Sandford's Instagram feed as you helpfully advised and it seems Humira failed for her and she was on hydroxy for her current/viable pregnancy. I've also just read a blog by a girl who did Humira, it lowered her levels but then she still had another miscarriage. For her successful pregnancy she, again, did hydroxy. So that makes me lean towards that. Plus Humira is eye-wateringly expensive. Any thoughts/experiences? x

@HoldingOn2Hope - I pushed for a full PM, refused to leave the hospital until I’d been given the forms (resulted in an overnight stay) but hopeful that I may get an answer. However heartbreaking finding out there was nothing wrong will be - at least I will know there is a problem and not the dreaded ‘just one of those things’. Or this may be me readying myself and trying to justify it in my head before it happens and the grief is trawled back up again.

@Everhopeful35 Humira is a specific TNF inhibitor. Hydroxy actually works in a number of different ways, but it’s exact action is unknown. From what I can recall from uni (I’m a pharmacist) one of its actions is on ‘cytokines’ (such as TNF but there are others). Cytokines are released by immune cells and effect other cells. I have no knowledge on how either work in pregnancy since it’s off-license use so the others may be able to give you a more definitive answer based on what they’ve been advised by Dr S.

Hi @Everhopeful35 I have taken Humira prescribed by Mr S. It was specifically for a high level of TNF Alpha cells which he said can cause trouble with implantation leading to either not conceiving or very early loss/chemicals. I haven't heard of anyone else taking Humira from Mr S from this thread, although there was a lady who also took Humira after she had a loss with pred/intralipids, that was prescribed from her IVF clinic after blood tests showed the intralipids didn't reduce her NK cells. She then had a successful pregnancy as far as I know, I'll tag incase she's still following @ginandtonicformeplease

@HoldingOn2Hope totally agree with you and the others - how on earth can the lab decide they won't test!! That's ridiculous and causing such extra upset, it's probably just as quick to do the test than it is to sit and read your file looking for excuses not to do it 🤬

Hello ladies,

I think I'm just subject to 'conflicting' info! So my consultant called the lab to ask further Q's and guess what? They gave the wrong info! They sent the report from my 3rd mc which was rejected based on no fetal tissue. He spoke to the scientist who the testing was assigned to and he said it's definitely being tested, dna has been taken from the baby and it's being tested so I should get results soon. I just feel a bit fed up of it all.
I went for acupuncture today and feel sooo totes after it which I experienced a few times last year but I think I'm mentally exhausted too. AF has finished but after acu I had some spotting today which the acupuncturist said can happen. What a day! 😞

@hrtbrk2 I'm seeing Dr S on Monday because a)DH needs to repeat the dna fragmentation test and it's easier to do it with Dr S as if I do move to Argc I have to wait until Aug to get the tests done b)my nhs consultant said to give Hydroxy a go and if it works it works and if no then he will get me sorted for ivf. He said all this immune drugs are trial and error. I wish he was private he's amazing! He gave me some of the meds too so that's a bonus.

*feel tired not totes

@HoldingOn2Hope
I’m so glad they were able to confirm your babys testing has gone ahead. It is truly awful waiting and then finding out there was no report. Fingers and toes crossed for you! Did they say how long you’d be looking at?
Being nosey at what you replied to another lady - is your NHS consultant prescribing you hydroxy? I’m always nervous to ask about ‘private’ approaches to treatment that I’ve read online incase mine gets the impression I’m ignoring his advice. I was supposed to go to the implantation clinic with Prof Quenby in January but said he’d save me money and travel and prescribe steroids anyway. Now it’s happened again, I wish I’d gone. Hindsight is a wonderful thing.

Hi ladies, unfortunately my pregnancy has come to an end. Following a couple of great first scans it seems the baby's heart stopped beating around 8 weeks. To say that I'm heartbroken is an understatement. This is my 2nd mmc this year, following the previous one in April. 5th miscarriage when taking into account 3 chemical pregnancies in the last couple of years. Awaiting genetic testing results, no living children. Age is not on my side either. How does one pick themselves up from here?

Hi @Wireless77, I just wanted to say how sorry I am for your losses. I have also just suffered my second missed miscarriage (awaiting genetic testing results too). I've also had a natural miscarriage and a chemical pregnancy, so four losses in just a year. It gets harder every time and I have no advice for you really except that every day past the loss you get a tiny bit stronger in my experience. I also cope by having a strategy in place of what we're going to try next. What treatment were you on for this pregnancy? Are you under the care of a repeat miscarriage or IVF clinic? If you are, push for a consultation ASAP so that you can get their thoughts on why this happened and what to try next time. x

@Jellystar23 @Chickjen Also, meant to say thanks so much for your thoughts on Humira. Much appreciated xx

I'm so sorry to hear about your loss @Wireless77. I was just saying to a friend today how hard it is when you're pursuing a plan that if it doesn't work, leaves you with little options. Holding onto hope is so hard but I think give yourself some time to grieve, be angry at the world (and anyone else) and shout about how unfair it all is. Then go about trying to pick yourself up. Like hrtbrk2, you may get some better understanding of what happened when the testing comes back. You said you were heartbroken and that's understandable 💔. I wish things were different for you right now but I think we all have a chance to get the babies we so desperately want. Sending love to you and your partner. Let yourself hurt and take care xxx

Oh @Wireless77 I'm just so sorry. It doesn't get any easier, it just gets harder and I'm sorry you are having to deal with this. What treatment were you on for this one? Have they given you any next steps? You mentioned age isn't on your side - am I able to ask how old you are? I just wonder if IVF might be an option for perhaps adding further control to the situation?

For now though the main thing is that you take time - for yourself and your thoughts, but just be gentle on yourself xxx

@HoldingOn2Hope thank goodness - I'm so pleased you are still going to get some results from your tests - were you are on hydroxy last time? X

Thank you so much for your kind words, everyone. I'm 43 (met my other half rather late in life). We have been thinking of IVF, but getting pregnant doesn't seem to be a problem. Have conceived 5x in the last 2 and a half years, but never got past 8 weeks...not sure IVF would help. I'm under dr S' care and taking hydroxy, intralipids from week 4 and all the supplements etc. No plan yet until the test results come back... Hydroxy seems to have put my autoimmune illness completely into remission. Is it just bad luck considering my age? It does get harder every time...and a positive test brings anxiety rather than joy...

Hi @Wireless77 I'm so sorry I hope you didn't think I was speaking out of turn with the suggestion of IVF i wasn't teaching you to suck eggs. I realise these are all things you will have already considered - apologies. Out of interest do you practice any kind of fertility diet regime at all? Xx

@hrtbrk2, no problem at all. It is a logical suggestion, I'm just not sure it would make a difference. The immune treatments by IVF clinics don't seem to differ much (steroids, intralipids etc.). No specific diet (should really watch more what I eat), but I love fruit, so having it daily. Not sure there is a clinic or a specialist out there who would have a definite answer to our questions...

Hello, I hope you don't mind me joining. I've been reading the posts here for many months.
I've had 3 losses and a recent very early loss on Dr Sheheta's plan. I was on pred no hydroxy. I've been under his care since December but fell preg during lockdown while off plan and have an appointment with him tomorrow to discuss the next stage.
I'm sorry to all those who have had recent losses and bfp's :(

@Wireless77 I've worked a lot with a private (holistic) fertility consultant who does a lot with women in their 40's helping them to conceive naturally and carry to term where they've previously miscarried or had infertility and a lot of that has been to change the way we eat in order to improve the quality of eggs, sperm and hormone balance to ensure everything aligns better - she has had some amazing results. If the immune therapy is working but your eggs/hormones could use some help this may really help you? And you only need to do it for 3 months for it to start taking effect on the eggs you will produce. If you want any more info I can inbox you just let me know - I was really cautious of it before but it has changed my life and when I mentioned to Dr Jan at Dr. S's office that I followed it he said 'if the whole world had a diet like that we would be a much healthier place' - just a thought my lovely I'll leave it with you xx

@Wireless77 I should add that before I saw her I thought I ate really healthily but actually it's not really about - it's more the ratio and balance of how much we eat in terms of proteins v's carbs etc and how they affect our day to day digestion/hormones/basal temperature, ovulation, sugar crashes etc so that our bodies function correctly x (I hope that all makes sense) sorry to ramble - it was just a real eye opener for me!