TTC: Pregnancy on Prednisolone or similar part 7

[ChoccyPud]

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!

www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

Euro it was in Chat. Are you going on holiday this year? Page 5.

bfpseeker welcome back- well, I'd rather you were back with good news but you know what I mean!. So sorry to hear your news. We've had a right spate of bad news here lately. He definitely tweaks things for different people so I wouldn't necessarily query it. Intralipids seems to be done for private but not NHS patients afaik.

Today has been my first day (so far at least) where I've had no bleeding or spotting. Feel like a potty training 2 year old but am very pleased to have clean pants at last! :)

Hope everyone is having a nice relaxing day. I wish the weather would improve its so depressing staring out at rain all the time!

Hi bfpseeker . . Oh no. Sorry to hear this news. I had 2 lots of intrallipids before embryo transfer and at bfp and it made no difference to me. I have also had 2 empty sacs and now (4) if I count the twin embryos. These were chromosonally normally so you don't necessarily have an egg problem. Dr s was telling me this all year but I didn't really believe it until I've seen it with my own eyes. I would just concerntrate on the nk cells chromosonal issues are random unless u have a karotrype genetic issue. Did he mention hydroxy to you?

Just popping in with a good news story to cheer everyone up on a rainy Sunday. A friend of a friend with high nkcs has had healthy 5lb twin boys today through ivf at ARGC today after 7mc. We've got to keep on trying ladies!

free havingkittens we went to see a Dandie dinmont breeder today as thinking about getting a dog. DH and I both allergic (obv!) so has to be a non moulting variety.....they are v cute but I've been sneezing and have itchy eyes, so we'll have to see.

Thanks choccy. Have messaged her.

Ahh ..bellyd do u happen to know what treatment protocol she was on ?

duggs I don't know exactly what treatment but I know she had ivf as she was losing her babies so early it was the only way they could monitor her closely enough in those v early stages. From what I gather ARGC is very very intense and take bloods, change meds almost on a daily basis so that is tailored to what you need.

Thanks bellyd is the clinic I have been looking into so an encouraging story.

Hello again Bfpseeker, yes I remember you popping in before. So sorry to hear you too have had a mc on the treatment. I hope it is some compensation in that a few of us have had that too and are now pregnant (and so far, staying pregnant). My last one was an empty sac too and had that awful round of scans you had as well - eventually having an ERPC at 8-9 weeks. I didn't have any testing done as Mr S was away at the time and I just went to my local hospital for the op. I did ask for it to be tested but you know what hospitals are like, it never came to anything. Oh I think I started to bleed around the 8 week mark too which, coupled with the round of inconclusive scans, made me realise it really wasn't going to work out that time. The next pregnancy has been with added hydroxycholoquine (am almost 28 weeks and still on it) but Mr S says it can never be certain which addition has actually made the difference.

I am not sure what Mr S is doing about the intralipids now so it will be interesting to see what he says to the next person who goes to see him privately. I think like someone else he does tailor the treatment individually so I guess we have to trust he is doing everything he can. What is your next step and when are you seeing him again?

BellyD that's great news about your friends with the twins! Wow - two of them. There are indeed a lot of positive stories about the treatment on Pred etc so we do have to bear those in mind as well as the bad news there has been on here recently.

Choccy great news that the blood has come to a halt. It is another of those depressing but necessary steps to get you back to normal and onto the next stage of things. But no, the depressing weather doesn't help matters at all.

Was just saying how depressing weather was early on other board and Hey SUNSHINE! at last. It's hammered it down this afternoon in fact most of day and then turned into a blue skyed sun evening. Hopefully this is a metaphor for some good luck coming our way next week!

Taken first Hydroxy today. Can I just check it is one a day and doesn't matter what time particularly is that right?

frozen and bfp so sorry about your m/c's.

It really will be interesting to see how Dr S progresses with things.

ari couldn't quite believe your drug count! But I reckon we all could rack up quite a good list! it's interesting to see what people are taking though.

Nite ladies
x

Just wanted to say hi - still on holiday, 10 days without Internet access but finally in a hotel with free wifi in the lobby. The dress code is "resort elegant" in this lobby and I can assure you the PQ family look anything but...

So sorry to hear all the sad news. Will catch up properly when I'm back in the uk at the end of this week. Very strange being over here without my mums net daily dose and my weekly scans and drs visits!

Thinking of you all

Oooh PQ 'resort elegant'...?! I hope some of the holiday clothes I leant you are doing the trick! We were wondering how you're getting on. Hope it's lovely and warm and youre soaking up all that vitamin d.

Great news youre starting the hydroxy today snoopy! Yes it is one a day and although I don't specifically remember being told to take it at a particular time, I've always taken it in the morning. It is a great drug compared to Pred with no huge side effects. I think it even helped me lose a bit of Pred/miscarriage weight before I got pregnant again. I occasionally get some slight nausea still but not sure if that's the hydroxy (as it can be a side effect), pregnacare (ditto) or just general pregnancy.

Waves to all! Another day packing (um, watching DH pack) ready to move next week.

Morning all!

Snoopy - I really hope you're right about the change in the weather bringing a bit more good luck to this thread. It's incredibly frustrating and depressing that so many people are having such a hard time at the moment. Here's hoping that people's luck will begin to change soon.

BFPseeker - Sorry to hear your news. I had a horrible two week wait for my last miscarriage to be confirmed as well (also empty sac, but not on the treatment). It's so hard trying not to get your hopes up in that time isn't it.

Frozen - Good luck with your appointment today. I really hope it brings you some reassurance.

Good to hear that the bleeding has subsided, Choccy. Hopefully you will soon start to feel a bit more normal, physically at least.

Ari - Another one here in awe at your dedication to supplemements! Do you take them all at once or at stages during the day? Also, have you noticed that you feel any different on them?

Enjoy the rest of your hols, PQ!

I wonder if anyone on here could do me a favour? I've passed my Dr Beers book to a friend who is away at the moment so can't consult it. Can anyone tell me what he says about early induction of labour/risks of going overdue for women diagnosed with NKC? I have a feeling that there was something in there about it, but I can't remember what. I have an appointment with the consultant on Wednesday who will give me a sweep and has made it clear that they want to discuss induction as they want me to have the baby sooner rather than later. She says that, partly due to my age, and partly due to me having had recurrent miscarriages, that there is an increased risk that the placenta will degrade. I don't know if this is due to miscarriages in general or specifically due to NKC. My due date is a week today, but this is a bank holiday and I'm wondering if they may be keen to induce me on the Friday to avoid this. I'm anxious to avoid induction, but concerned about what the real risks of waiting are. Obviously I'm going to have a detailed conversation with her on Weds but I want to make sure I'm well-informed in advance as sometimes doctors can have a one-size fits all approach. Thank you!

Oh, and I've got some pregnancy tests to give away if anyone would like them. I've got:

1x Boots digital (exp date 04/2012, so I think it should be OK)
1x First response early result test (exp 2013)
1x Clearblue digital (exp 05/2012)
I've also got a small bag of about 20 internet cheapies (again exp 04/12, so it probably makes sense to splite the pack and give half to one person and half to another or something so they get used up soon). They're supposed to be 10 MIU, and really accurate. I've actually had a more accurate brand of cheapies in the past, but they're not bad. I found them useful for following my HCG levels down after a MC as I had retained products and it took two months to get a negative test. Just PM me with your details if you want them and I'll pop them in the post. xx

God, that sounds like I'm trying to palm off all my out of date products on you all! I just thought that the digital tests are so expensive that if (like me) you're an obsessive tester they could save someone a few quid.

Coconut I think there is something in the Dr Beer book about nk cells attacking the placenta in late pregnancy but then I recall that Mr S saying to free that after the first tri treatment , she was like a normal pregnant person, so maybe it doesn't apply if you have been treated early in pregnancy? My book is at home, so this is just what I can recall.

Thanks Euro - Yes, I'm a bit confused as to what the deal is if you've had the treatment for NCK.

I think Stogan was induced early, but not sure whether that was for another reason? Digi's ds came a week early but I think she said that ds1 was also an early arrival, and he was quite a bif lad so nothing to do with NKC, I think.

Hmm. It's tricky. My doula is helping me research the risks of going overdue at my age but I wouldn't expect her to have knowledge of the whole NKC thing.

coconut I would also be interested in that too. I thought i had read something about the placenta degrading with NKC cells in Dr Beers book too but can't check it out at the moment.

Can't they do tests / a scan to check the placenta is still servicing the baby ok? I don't know - check out the blood flow or something? I am also very wary of inductions and want to avoid this.

It's not quite the same but in case anyone is interested i had my friend ask a question to Dr S on my behalf the other week when she went for another appt. Apparently there is no increased risk for premature delivery with NKCs.

BFP sorry to hear about your latest mC. I am surprised Dr S now sounds like he is not recommending intralipids as much. This time I only used intralipids and have VHNKC (no pred, no hydroxy etc) and am 28 weeks tomorrow. I like to think they worked but maybe this one would have worked anyway.

Having asked Louise about it too Coconut I am still confused. I leant my dr beer book to pebbles so don't have it to hand but do remember something about him preferring to induce/ do a c section at 38 weeks! I mentioned this to Louise and she said that is no longer the case. So I guess the jury is still out there and I look forward to asking mr s about it when I see him.

Also in dr Beer's book, does anyone remember one of the case studies who said her placenta was noticed to be a bit of a mess after birth and was passed round the hospital room so people could check it out? I do remember she says she was not on that aggressive treatment though.

I am intrigued as tbh I have been harbouring thoughts about wishing for the baby to come a bit earlier rather than later. I guess there are a few things tied up in that, even though I know it's best for the baby for it to be closer to the 40 weeks as possible. Issues include worrying about the state of the placenta and wanting to get it out sooner rather than later, and also about worrying about things going wrong at the last minute after this whole long journey. I guess having been more or less pregnant non stop since January 2011 there's also something selfish in it on my behalf.

Let us know what you find out! Can't believe you only have a week to go now!

And Euro is right, Mr S and Louise have both said I am like a 'normal' pregnant person now. It's hard to believe though isn't it.

thanks free Have you found a place yet? Bet you just want to nest now
pQ Sounds lovely -enjoy!
frozen So sorry cocked up including your name with my post about M/C yesterday. I can't think straight with lack of sleep on pred.
I hope you find some answers today.

Hi snoopy I take two hydroxy a day ( hope that is what I am supposed to be doing) but I think that may be because I am not on Pred anymore and have vhnkc.

P.s. I take one in the am and one in the evening.

london sorry about the miscarriage.

choccy glad the bleeding stopped. At least it is a sign that everything is settling down. It seems ages that I almost meet you that time in NLC.

belly not sure what Mr S would of said about the hydroxy. It must be lovely not to have the pred induced 4am wake up calls.

free enjoy the sitting back supervising the move role. Do you have an exchange date yet?

coconut loving the passing of the lucky pee sticks. You being lucky because the finishing line is in sight. I think it would only encourage my POAS obsession.

frozen thinking of you hope the scan brings you good news.

pq hope you enjoyed your enforced mums net free time.

duggs how are you doing? Are you going to see Mr G?

Ari you dedication to the supplements is something to aspire to. I am surprised Mr S said he did not think pred affected your cycle. I am having a med free cycle. My DH I think is fed up with the irritable cow slightly bad temper I have on pred. So I will wait to see if this cycle is any different.

snoopy fingers crossed you are right that we are due some good news soon.

I know that I am missing people off this but I normal have a memory like a sieve anyway so have no chance with the speed this thread moves at. Right I am off to put dinner in the oven. Catch up later.

belly what is your activation level if you don't mind me asking?

Mine are V High too at 3.16. and he just pescribed 1 a day although that may be because at the time we were just discussing the Hydroxy and at last minute he said "Oh I'll write you a pescription anyway and see how you go on next months pred". So when go down for next super ov I will double check the dosage.

Thanks for that info Duggs, I just presumed empty sacs were always chromosomal probs..He didn't mention hydroxy to me, he's maybe keeping it up his sleeve for if the intrallipids fail me!
Next time I see Dr S Free is when I get pg again, or I guess, if I don't get pg in a few months.
Lemon I am usually a bit of moody cow in the 2ww, although I don't think its the pred I think its just the not knowing whether this is the month that makes me irritable!

Hi ladies, just a quick post before I head to bed, have read all the news but no time to post properly.

I would love the tests Coconut if no-one else has claimed them yet, I've PM'd you.

Goodnight x

Hey ladies. lemon.not going to see mr g or anyone as treatment seems to be that I had anyway. Pred, intrallipids, clexane, asprin, cylogest. No point. Seeing dr s on saturday. DH and I seriously looking into adoption route as It all seems a bit random right now. It will take a yr before we are even approved because have to wait post ivf. If I get given hydroxy I will give it a go but my pred days are over once this tapering ends. Unless I ever get a bfp again then I'll chuck it all at it in a vain attempt something may work. I don't have high expectations tbh. Am not touching frozen embryo. It can stay there - who knows in a few yrs there might be more progress with this treatment and if right I can whip it out? Kind of accepted at least one adopted child for our family and 2 if I don't have my own over next 5 or so years. But no more pred from ovulation and no more SO or ivf for me.