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!

Scooter, so sorry to hear that. Crossed posts earlier. That sounds awful and yes it is so heartbreaking having seen that heartbeat at 8 weeks, you kind of hope by then it's a very good sign. I know what you mean too about putting yourself through it.

Duggs this was an accidental pregnancy so I wasn't on the treatment until 6 weeks by LMP. Next time, like with DS, I would see Mr S from the start and be on meds in advance of getting pregnant in the hope that would make the difference. It was a stupid mistake getting pregnant without being on the treatment from the off, but it was a first period after stopping breastfeeding mistake and quite common apparently! The only thing is we here are unfortunately not normal people in that way.

Thanks for the supportive messages.
free so sorry to hear your experience... precisely why I didn't go to hospital, although NHS Direct or the like would have sent me. Why does poor/neglectful treatment always go hand in hand with mc, as if things aren't bad enough. Hopefully catching it from the start with identical treatment plan to your DS will make the difference for you next time.

Thoughts on testing....why don't we undergo any testing while we are pregnant during at-risk times particularly those of us who have had promising scans and things look hopeful then suddenly change. I know things fluctuate but I am wondering whether contractile uterus, incompetent cervix or hormonal imbalances are factors which aren't a problem early on but start in a particular danger zone (for me 7-9 weeks)? There seems to be such a pattern, I can't believe it's beyond medical science to work it out. Feel like asking to be wired up at 7 weeks and watched like a hawk. Anyone else wonder about this?

I have thought that about testing Scooter and would love to ask Mr Shehata or someone about it. What if they admitted you to a clinic for a constant ultrasound in your typical danger zone. Is there a point where something early goes wrong they could pin point and find out more? Or if it's going wrong is there probably nothing that can be done anyway. Of course it would cost a lot of money for that level of care but I'm sure there are people who would want it if it was available. You could base it at a nice boutique hotel, like a fitness camp place.

scooter I'm so terribly sorry. It's so very hard when things go wrong after you've seen a heartbeat and have begun to hope. Thinking of you. x

free that's awful, having to wait so long and having to deal with the chaos of the hospital while feeling crap. Sometimes in this process of miscarrying words can fail you at the callousness of the so-called caring professions.

Hi arian, hope things are ok with you.

duggs thanks for the info about CGH. I've never had any of my mcs tested but each time I've just been told that it 'was probably' chromosomal. And on that basis, DH and I began to consider IVF with some sort of pre-implantation screening. You're right, our local clinic (Oxford Fertility Unit) does offer CGH, have just gone to their website and done a search! I'm feeling a bit miffed now as in three discussions with the people there only PGS was ever mentioned to us, even though it has a much lower success rate than CGH. I only found out about CGH via this thread. So thank you everyone.

All of this was pre-Shehata, though, so natural conception on his protocol is now going to be our first line of attack. And if I do miscarry again, then chromosomal testing is going to be a dead cert - I am so tired of the 'was probably' line.

Hello to everyone else!

scooter and free, probably the reason there isn't that level of testing/monitoring is because they feel that it wouldn't be able to save a pregnancy that was going to fail - so the investment wouldn't be worth it in terms of altering outcomes. Though when it's your pregnancy miscarrying, you just want to know what the hell is going on.

Just in general, Dr Braverman does rigorous blood testing during pregnancy for his clients, especially during the first trimester so that things such as spikes in NK cell levels or TNFa can be spotted as soon as they occur and treatment adjusted accordingly. Pity that's not the case over here :( Ok it wouldn't catch things like incompetent cervix, but at least for those who have immune issues it might help.

Does Mr S offer no blood tests at all then once you're pregnant, just scans? Sorry to be so ignorant, am new to all of this.

I've never been offered any. Just scans every 2 weeks; discharged after the steroids were finished.

ari where is Dr B based? Is that who you are seeing now?

village no never been offered tests in pregnancy (only 6, 8, 10wk scans) with Mr S. He then does an appointment at 10 weeks which I have never reached.

St Mary's do a TEG test in pregnancy for clotting issues, treatable with 150mg aspirin or heparin but I was on that (fragmin in my case) this time around so no point having the test.

I did ask for (and get) NK cells testing once pregnant but was told they fluctuate in pregnancy anyway and apparently they can only rely on a baseline (not pregnant) level. Just for info, my NK levels did reduce on steroid treatment but miscarried anyway.

scooter Dr B is held to be the leading expert on immunes issues in pregnancy and is in the US, although he has patients all over the world. Much $$$, mind you! No, I'm not under him, I'm under the Serum clinic in Athens, who base their protocols largely upon those of Dr B (though they don't ask for the regular blood testing that he does).

village No I was never offered further blood testing while under Mr S, nor was it suggested.

Thanks, all. I am rapidly learning a lot. Thanks too baking for your comments above about egg ripening/implantation statistics while on IVF. Makes total sense that the stimulation process itself should affect egg quality, though this never occurred to me before (and indeed the specialist at the clinic where we had those tentative discussions about IVF never pointed it out either)... Am beginning to think it will be a miracle if I ever do get successfully pregnant again. Meh.

Scooter I am so sorry I think we are jinxed.

free that sounds like a rotten experience. It would make such a difference to feel cared for during such an awful time.

scooter I'm so sorry to hear your sad news! It's hard to know what to say! I'm so sorry!

free glad you are feeling better an sorry to hear about your crap experience! What hospital did you go to?
Xx

Scooter so sorry to hear your sad news. How awful for you after seeing the heartbeat. No words.

Free sorry that you had such a traumatic experience yesterday too. I hope you are going to complain. Very impressed you are up and about today, I normally feel rough for days.

On the whole NK cell testing during pregnancy, the Argc definitely do. A friend of mine who now had two little ones after 9mcs was hauled back from cornwall when her NKcells spiked during preg to have IVIG. If I ever get pregnant for any length of time again, I am going to insist on being tested regularly throughout.

Yes belly. I was just about to add that. ARGC monitor throughout until 12 or 16 wks I believe x

Scooter I am so so sorry. None of us deserve this awful time we are having. Each time we get our hopes up and they are cruelly dashed. I also feel like I am bringing the miscarriage stats down for everyone else as only one friend out of many has experienced 2 miscarriages (she now has 2 kids). This is the first time that I am reconsidering whether I want to keep trying - as you say, it effects everyone in your family not just you.

Glad that my way of looking at miscarriages in a row is wrong! I forgot that being stimmed on IVF effects egg quality. I just wish that CGH testing could be offered to us all but I still don't know if that will help.

Free I also wonder if being on Mr S's treatment from day 1 would have helped you or not. I wondered if I should have taken steroids from ovulation this time but Mr N treats pre pregnancy with intrallipids only. Its hard to know what combination works for each of us or if it is a chromosome problem. It's more likely that both of us have the chromosome problem this time. Awful treatment at your hospital - I would complain. I have noticed that since my 2nd trimester loss, all the medical staff are treating me completely different and much more compassionate. I get the impression that they see so many miscarriages that they are indifferent to it at some places. A loss is still a loss to all of us though, regardless of how far along you get.

Belly I wouldnt want IVIGs so I think I am on the highest drugs etc for NK cells - not sure what else I could do. What else do they offer apart from IVIGs? Theres no point in being monitored if they cant do anything else anyway apart from progesterone, steroids, intrallipids and aspirin or clexane.

I was told that the ARGC do blood tests in pregnancy but it can be a bit OTT and its expensive. You have to be able to go to London whenever they say so could be every day - impossible if you have a full-time job or other commitments. Their success rates do speak for themselves though. I know they used to have a criteria of only treating women with an FSH under 10 (off the top of my head) so it rules out all the peri-menopausal women who would bring the success rates down!

I have heard an IVF cycle can cost 30k at ARGC - dont know how accurate that is though. I know one of the ladies on here was paying around that last year.

Sue my friend is 46 and cycling with ARGC. She has a DS who is 6 now but she is having ivf lite because her FSH can't get down... Anyway have a look into IVF lite.... See what it brings up..? X

That cost £5k I think as less drugs... She has also had humira for immunes too x

My God; I could possibly countenance throwing 5k down the toilet, but not 30k! For one go!

Just wanted to say that I am so sorry to read that so many of you are having such a bad time.
Nobody deserves to go through this nightmare journey. My thoughts are with you all.
On the chromosomal issue, duggs your most recent miscarriage was so similar to so many of mine, measuring behind, hb, then nothing a week or so later (for me around the 9 wk mark). I know one of these mc's was trisomy 16 and my suspicion is that pattern is related to chromosomes. Thinking about it. I was under Mr S for one of them and when he scanned me at about 8 weeks (measuring behind, slow hb) he said that i was likely to mc and it was likely to be a trisomy issue which it was.
sue in line with your thinking, I feel sure that most of my issues are eqq quality related. I have just caught a good one this time. I am currently 27 weeks pregnant and whilst it's difficult to keep the faith all the time, I am starting to believe all will be well. I have a growth scan next week and can feel the little one wriggling as I type. In spite of my joy at being pg, I have suffered with terrible depression from about 16 weeks, I do think this journey takes it's toll. I was in the process of trying to have a baby for 3 years and unable to really acknowledge the grief of loss along the way for fear of not being able to keep trying. I hope I don't sound ungrateful as I know how lucky I am.
mollie I think of you often, not sure if you are still reading x

Fingers crossed that the first trim ladies hang in there.

Clabbage, congratulations on your pregnancy. It's so lovely to hear. And I understand completely what you mean; I had post-natal illness after my DS was born. You can't just wipe your experiences of ttc away unfortunately and it tends to catch up with you at some point, and all those pregnancy and breastfeeding hormones exaggerate all your feelings. It will get better though. Are you being treated for the depression? I seem to remember that some antidepressants are supposed to be okay in pregnancy. Good luck for your scan next week.

Lovely news clabbage and sorry to hear of your depression. It isn't really that surprising after what we've all been and are still going through. I am also a believer in the chromosonal theory and I have to say the nk cells tests I do wonder about for some of us. Apparently nk cells are raised in pregnancy and after a mc and for me the closer to a mc or pregnancy I have been the higher my nk cells results. I will take the drugs anyway regardless but I'm very interested to watch what comes out in 20 years or so. Saying this there are obviously some ladies where auto immune issues are relevant and the treatment plan with the lucky egg is all that is needed, but the blanket "solution" for all approach is a little unethical and should be dished out with much more caution than some doctors seem to be dishing. Surrogacy obviously isn't an option for me now so will do 2 more rounds of IVF and if those don't work will look at serum and egg donor route. Then game over.
A week with a 9 wk old puppy, 2 cats and continuous rain and an afternoon with a 2 yr old -has taught me I could only look after a child if it was my own and it wouldn't be full time !! Have had such rose tinted glasses to motherhood some reality thrown in !!

Can I also ask clabbage or anyone else with proven chromosonal losses that also blighted ovums and chemicals are also indicative of chromosonal losses. What would an nk cell loss look like? And for freelance to get to a hb stage then it sounds more chromosonal than if you'd taken the drugs before conception I don't think it would have made a difference in this instance so don't be too hard on yourself. They wouldn't test you would they? X

Why no surrogacy now, Duggs? You'd still need to have the IVF part to get the embryo, and therefore able to choose the good eggs, and then by implanting it in someone else you've got round whatever other immune issues may or may not be involved. Belt and braces. I can understand your wanting to experience pregnancy and childbirth, but personally having done it once, that's the part of producing a child I could most easily dispense with! Really didn't enjoy it. All I'd be interested in the second time is producing a healthy child with a healthy mother. But it's a rite of passage, I know, and of course you want the choice to be able to experience it.
As to chromosomal problems, as Sue said before, NK cells attack the eggs, causing low AMH in some people. Could they not also affect egg quality, I wonder? Are our eggs on the whole worse than your average fertile woman? It certainly seems that way.