TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Oh yes I'd forgotten that about nk cells possibly affecting egg quality. As for surrogacy i don't think I could go through it knowing that my eggs were probably a potential issue - more so than normal. Ahh if only we knew what decisions to make. I'm starting to feel possibly that life without any children wouldn't save so bad.

I know my last loss was chromosonally normal, and since high NK cells is the only thing that has been found wrong with me I'm assuming that caused the miscarriage. All my previous losses have been very similar, though were not genetically tested.
Pattern is measuring behind from 6-7 weeks, slow to develop HB and has been weak/faltering when it did develop, followed by natural miscarriage at 8-10 weeks.
I think chromosonal losses can probably vary a lot dependent on the defect. Some will never develop beyond a few cells and be a chemical or very early loss, others can develop to full term e.g. some of the trisomys, and I would think it can be anywhere in between.

Ohh yes and just re read dr beers theory about nk cells affecting egg quality. I had totally forgotten all of that. Grrr steroids for 2 yrs is not much fun. Esp when they don't seem to bloody work!!!

I'm sure you're right, baking.
... It also makes you think that to protect eggs from damage from NK cells, you need to be taking something constantly, like hydroxy, not just two weeks on, two weeks off, as with pred.

I'm off to interview professor Quenby. Any questions?

Well, that very one, I think, please Free. Do high NK cells damage eggs/reduce AMH?
Also, what does she think of the new treatment that's been announced a week or two ago, where they dissected the ovaries and put them back in POV? Does that have potential to restore fertility in older women, and if so, how soon will it be available? Not completely relevant to NK treatment, I know, but relevant to those whose fertility is rapidly waning alongside the NK problem!

Timings and dosage of nk treatment why so many variations?

Hi all, can't believe how many posts have been written since I was last on here. Have been catching and reading everyone's updates and am so shocked by the heartache and uncertainty we are all going through. It does seem so unfair. Having said that there is also an amazing strength to you all whether you are aware of it or not. The support on here is phenomenal and although it won't stop the mc’s, it is still so good to know that there is a forum that can empathise with the heartache and worry and advise accordingly.
I am seeing Mr S on Monday to get the results of all my tests and his suggested protocol for me. Reading all of the recent posts I have come to realise that I need to be more realistic in my expectations of the treatment. I think that in my head Mr S was going to solve all my problems and I would finally carry to term - first time lucky. Although there is that slim possibility, I am now aware that in truth it will likely take time and different meds to help me achieve this.

Whatever happens I know that am going into this with a great back up team of cheer leaders, coaches and supporters is all of you.
Village sorry we won’t meet up on the 28th. We will definitely have to meet up for that elusive coffee soon though.

Hugs to you all

Thanks everyone, Didnt get them on time sorry but had a really good interview, she's very passionate about it all.

Good luck with your appointment Luna! Let us know how it goes. I think none of the treatment is a gauranteed bullet but what treatment is? However Mr S has a very high success rate considering the problems of those of us who find our way to him and that should inspire some confidence. Of course miscarriages for other reasons still happen - egg quality, chromosomal... But we are in with a much better chAnce under such experts.

Free did she mention why her protocol is so difference from dr S, dr Gorgy and dr Ndwuke. I am really wonder what his success rate is when rm success rate is 70% without specific treatment?? What is her success rate I wonder ?

Forgot to add reason in going back to dr s is because I want more hydroxy otherwise id go back to dr Gorgy as he is more extensive. Weird they don't share more and are more cohesive ( well not weird -free market commerciality - but a shame none the less )!

Prof Q told me 60%, but she said for the subset where there are NK/immune issues, very unlikely to succeed at all without treatment. I think a lot of the 70% is that statistically some women do have three chromosome problems in a row then catch a good egg, there really isn't anything wrong with them.
What success rates do the others claim? Should be higher with more complex (not to mention more expensive) protocol?

Thanks for kind wishes. Not being treated for depression but will def have a chat with mw next week.

duggs I think you and I feel similarly re Mr S. I hate the fact our vulnerability leads us to compromise. My head goes round in circles on the whole NK theory. I find it interesting that what Prof Q has researched and proven seems to be a whole different issue than 'cells attacking embryo'. Didn't she in fact link it to them preventing steroid production.
Ii haven't read Dr Beers book. How well researched and evidenced is it?
Also why doesn't someone just test a group of say 1000 women (via blood) and see the NK cell levels. I just wonder what 'normal levels' are. If the nhs doesn't acknowledge NK cells as an issue then non treatment of women with high levels wouldnt be unethical. (am I making any sense?)
I have this nagging feeling that many of us would have reached our goal without treatment just because of our sheer will to keep trying. I would still like to know what Mr S's stats are for pregnancies overall. Surely the 85% figure relates to number of women not the no of pregnancies?
Apologies luna that's all a bit negative given you are about to embark on treatment. Without doubt for some here it is the magic wand and I truly hope you are one of them.
duggs I don't know what an NK mc looks like typically. My 8 have gone as follows. No 1, 6 weeks (no scans) no 2, 9 weeks (no scans) No 3, 12 weeks, scanned whilst miscarrying, measuring 9 weeks. I cannot believe I didn't get that one tested (hindsight eh!) No 4 chem pg about 5w5 No 5 6+weeks No 6, 7 and 8 all scanned at 6/7 weeks, all measuring behind. All heartbeats but behind by 8 weeks, all lost around 9 weeks. They have all been natural mc's. No 7 was Trisomy 16 and for me because no 2, 3, 6 and 8 were so similar, I can't help but feel were too. I don't know about blighted ovums. We do have some horrid immune issues in the family. My brother has in fact been treated with hydroxy for an not fully diagnosed arthritic condition. He and I both have raised anti nuclear antibodies, the only abnormal test I had on NHS.
But...here I am, 27 weeks pregnant!

prof Q's recent paper says uterine NK cells are a marker for locally deficient steroid production, hence lower doses of steroids (maybe less than an immune suppressing dose?) The Clexane is for cytoprotective effects on placental tissue, not clotting, and the progesterone from mid cycle is supposed to help prepare the lining for implantation. Her take on it doesn't seem to be about suppressing an immune response at all.
clabbage is quite right, we need big studies on all the treatments. Probably in 10 years they will have cracked it, but that will be too late for most of us.

What does of steorids does she prescribe, baking? In my last cycle where I conceived, I only took 10mg, because I hate taking them, and that worked. Well, worked until the faulty chromosomes caused me to miscarry! So this time I asked Mr S if I could have 10mg tablets and he said no, so I've had to continue with the 25mg tablets and cut them up, which is very inaccurate.

20mg from a BFP

Good morning everyone

Baking I hope everything goes well at the scan today!! It's a bright sunny day so "glorious Thursday" not doomsday! .

Luna good luck on Monday! I hope you get the answers that you want!

I just wanted to ask is anyone else on 40mg steroids ? You all seem to be on lower ones! I seem to be on extra high of everything!
So you think if we go to these Drs on mass they can use is as their tester pigs??

Xx

My friend LJ71 was on 40mg. Plus intralipids and hydroxy.
guinea pigs, indeed. I often wonder if there'll be any long-term side effects to my DS born after pred treatment. He seems to have a very 'masculine' brain (extremely competitive, not very cuddly) and I wonder if the masculinising effects of steroids could have affected him in the womb.

Scan fairly positive. Baby measuring 8 weeks exactly and strong HB. There is some bleeding around the sac so been told to take it easy and will be rescanned in a week, but he said it is not uncommon and often resolves.

Thats brilliant Bakintins! Is the bleed like a hameatoma? Loads of women get that, its apparently from implantation and normal. xxx

Yes. He said it would most likely resolve so not to worry hollow laugh but also to try to take it easy.

Fantastic scan news, baking! Thrilled for you!

Just wanted to say that I've been following the conversation about specialists and different approaches with huge interest.

Luna I feel rather like you - having come across a possible diagnosis (and I haven't even been diagnosed yet - will have to wait till 6 Nov for results!) I thought that this must be the holy grail. Now I can see that quite likely there are going to be nuances of uncertainty and suffering that I hadn't even bargained for. But as free said above, Mr S does have a high success rate, and that's something to hang on to. I so hope Monday is a good appointment for you and that you get the answers you need! x

Great news Bakingtins. Put your feet up and do nothing now but listen to relaxing music and try and find a zone of calm - Doctor's orders

Thanks Team is it weird that I am excited? I finally feel like I am being proactive and taking charge but do hope he doesn't prescribe me 40mg of steroids. Is was bad enough on 20mg

Waves to you all

Thanks Village positivity rules!!! Bring on the meds!!!!

Baking that's fantastic news! See it wasn't doom Thursday after all!!

Luna no it's completely normal to be excited! It's that feeling of getting somewhere isn't it?

Are you seeing him this coming week?

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