TTC/Pregnancy on Prednisolone or similar part 8

[Arianrhod]

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!

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 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

Oh fabulous. Fingers crossed kittens interesting both u and sue got bfp after a cycle with no pred. Am REALLY hoping for you. I am only 2 dpo so a while yet but haven't taken pred since April but i might have just missed the timings because of my work trip. Think I might do super ovulation next month if I need to. So happy for kittens got goose bumps when I read the news.

Great news Kittens. Keeping everything crossed for you. Think Louise is just off this week. x

kittens I could weep with excitement!! I am so so thrilled for you. It's about bloody time. :) I will be keeping everything crossed for you :) I don't know about intra lipids, if you are working from mid day - can you get them earlier? Around 8am? I am sorry I am not much help.......
duggs - you are up next. Obviously when I had a stern word with the powers that be - it worked for Kittens so I will await your news in about 10 days time :)

All ok here, my bump seems to have dropped somewhat. Still breech as I can feel a bum and feet in my pelvis. I really don't want to go into labour early, and DP is away this week so my mum is staying just in case. It's nice, just watching some sport, walking the dog and pootling about :)

I don't feel ready though - does anyone??

Oh my kittens!!!!!! I want to be excited for you! Can I be a little bit? Can I? Sooooo pleased you finally got a bfp. Off the starters block at last! Now it's down to the pred and intralipids to work their magic. Hope you manage to sort it out. And fuck it, if you can't get hcah to turn up before your shift then pull a sickie - finding cover is not your problem. But hopefully no need and you can keep yourself in denial busy for the next week or so till that first scan.

Thanks ladies . I'm in a right flap at the moment. I'll just paste what I wrote on the SO thread -

Mr S said that because of my situation he would send a prescription to HCAH for them to come and do if for me at home before I go to work, but I've just spoken to them and they can't guarantee a time for me and say it could take up to 6 hrs. I'm in a bit of a flap now and have had to send an email to my colleague who got me on this job explaining the whole rather private and delicate situation to someone I haven't even met in the hope that she will be able to cover for me on my job for a day as she is the only one I know who has the necessary security clearance to come and work at the games for me. What bloody awful timing!

Apologies for the inordinately long sentence!

Yes, digi if the worse comes to the worse I will have to pull a sickie! My clients are from South America so they are quite laid back, including in the organisational sense. There was a good chance they would've had to shoot without me on the first day because they sent off my details for security so bloody late so they can manage without me for a day if needs be I suppose. I just hate to mess people around.

Quite a day all round. I could well do without being here just at the moment but all the freelancers will know it's pretty impossible to turn down work, especially long bookings (and especially with intralipids to pay for!). My stepdad has arrived at my auntie's today, with my mum's ashes. It's taken a month of wrangling with the French beaurocratic sticklers, waiting to find out if we had permission to bring them over due to the fact that my stepdad unwittingly broke French law by keeping them at home for 7 months. Finally they give clearance and now, at the time that we were supposed to have a little memorial and scattering I can't be there at all during his visit. We have decided to postpone this to Christmas because I'm not around but I wish I could be there. To coincide with all of this, my grandma who lives at my auntie's too has gone into complete dementia free fall. Doesn't know where she is and wants to go home. Doesn't know who my stepdad is, nor where France is (she used to live there) and is getting very agitated.

I think my head is going to explode!

Hi everyone, I just started a thread about this and then realised there is this long one already. This is my story:

DH and I have been TTC for five years now. I have ME and a cortisol deficiency and often feel very unwell and we have had four lots of usuccessful IUI and two lots of unsuccessful IVF.

We have no obvious infertility problems. I am now 40 but we have been told that we have very high fertilisation rates and very high quality embryos - more like people in their early thirties - so egg quality doesn't seem to be an issue at the moment.

Consultant seems to think that my immune system may be destroying the embryos and wants to try me on steroids - 30 mg prednisolonne - for my last lot of IVF - we have two frosties left.

Am just about to read through the thread and get an idea of how this has worked out for other people.

Welcome mightbe, you are in good company here. We are a mine of information between us and our obsessive googling! The immune theory would definitly make sense, with your ME and cortisol deficiency. Best of luck with your next transfer.

Anyone else, especially the recently pregnant, I've just started having really bad cramps for the last hour. Do you think this is cause for alarm? I have had those drilling feelings that you get with implantation a couple of days ago, which was what raised my suspicions in the first place. That was a familiar feeling. These cramps feel like strong AF cramps so not sure about them. Yesterday I had. Little creamy brown CM (I think we're past worrying about TMI here, right?) and today some pink. Let the metalling begin......

Sorry about the weird punctuation. Tablet issues!

Oh f*. I just went to the loo and I'm bleeding . Maybe it's a chemical.

Sorry been out of the loop-
Kittens- my fingers are crossed for you. Could it be implantation bleeding? I had that with this pregnancy.

Welcome to all the newbies. I need to look back thru the posts for everyone's stories, but just wanted to say welcome. This board has been great for me (a more recent newbie) and the ladies have all been so supportive and informative.

I had my 10 week scan on Monday and have my nuchal scan on Tuesday 7th. I think Sarah asked - but when I booked in I was t

-stupid IPhone-

As I was saying ...

They wanted to see me early for the nuchal scan due to my previous issues. I was told that between 11 and 13 weeks was acceptable. Luckily my hospital gives same day results as well.

I wanted to ask if anyone has broken out with 'bumps' from the pred? I have a collection of 20 or so bumps on my neck, which aren't itchy...just very unsightly.

sue I can't believe how fast time is going- second trimester!
olives; sarah almost clear of the first trimester.

I am currently mentalling over coming off the pred; and hoping that I didn't take too long between finding out I was pregnant and taking the pred (I was 4+5 or more by the time I was diagnosed/prescribed) as someone mentioned that poor management early on COULD pose problems or a second trimester miscarriage...

Oh Kittens, just saw your post, really hope it's implantation bleeding.

Hi *Kittens' what turmoil you are going through. Like I said I have had bleeding, brown gunk and even wore a pad for a day in almost all my 11 pg's. Not one of them have been completely clear of gunky stuff. I hope everything is OK for you and it stops as quickly as it has arrived.

Thank you for all the welcomes. Kittens, I really hope everything is ok, really keeping my fingers crossed for you. Unmumsnetty hugs.

How did people find taking prednisolone generally? Did it make you feel ill or put on weight? I find I react quite badly to the cyclogest anyway so can do without feeling even worse!

mightbe I have had no issues, other than spots and extreme irritability (although I tend to only snap around people I know well)

Wow Kittens! Am so pleased for you!! I know it is a scary time but you?ve been so long without a BFP this HAS to be a good one. Everything is crossed for you. We are practically crossing the whole thread. Can?t help with intralipids at home ? have you explained it to NLC and asked for their advice? Sounds like work is going really well too ? I would have been hard at it at the OP too, but obviously am otherwise occupied. Oh, just seen you might be resolving this with a sickie. Good idea ? it?s too important to mess around with. Sorry about the situation with your granny, it?s a very sad thing to witness for you and you have had to be so strong for everyone.

Oh shit ? just read down further and seen you?re bleeding. Jesus. How is everything now?!

Battery ? yes I was completely ready

Nah, it?s such a shock to get to the end of the whole pregnancy thing and then realise you have a baby! It?s a steep learning curve and the first week or so can be very emotional. So bloody exciting you are almost there though.

Haven?t heard from Charlie for a bit ?hope you?re getting on well!! We should maybe all start posting on the ante-natal Pred Thread that Digi set up not so long ago ? especially if we have feeding/sleep questions etc that no-one wants to be bored with here.

Hello Mightbe and welcome to the thread! Your experience is similar to quite a few people on here including my friend Pebbles. I really hope the steroids do the trick for you this time. Are they going to put back both frosties at the same time? There are a lot of people on here who have had multiple losses and just one course of steroids has done the trick! I hope that is the case for you. The steroids are not much fun to start with ? they keep you awake for a few nights ? but otherwise not too bad at all. And in the scheme of things you are on them for a comparatively short period of time ? if staying pregnant it?s only the first trimester ? so that is soon over with. I have taken them for two pregnancies (one ending in ERPC the other ending in a baby born on the 17th July!) and I did gain weight but as soon as I went off them that tails off too.

Bertha we have all been nervous coming off the Pred but everyone has been absolutely fine. I really think if you have taken it in the first trimester and are still pregnant now it has done its job. Try not to worry too much and look forward to being Pred free!

Great news for the good 10 week scan. Didn?t get any bumps with Pred but there are so many weird things involved I wouldn?t have been surprised! Did get some aches and pains when coming off it.

Good luck for the forthcoming scans for Sarah and others! WIll be lurking and watching out for news.

Having a rare break whilst DS has a nap! I think I got around 6 hours sleep last night (all together that is ? not all at once) so am feeling ok

I'm pleased to report that the spotting was pretty fleeting. Nothing more than a few brown blobs before stopping. Isn't is charming, the subject matter we talk about here? Still, it's nice to have somewhere to be able to be so frank without people being grossed out!

The line was no darker today but I did a CB Digi and it has declared me 1-2 weeks pregnant. I am insatiably thirsty and can't stop going for a wee and my sense of smell is on high alert. So, all looking fairly positive after my moment of hysteria yesterday evening.

I have booked intralipids at home for Tues, when I will be 4+4. Mr S doesn't usually prescribe the treatment at home but knows my situation so has made an exception, which is good. I will still have to feign some sort of "family emergency" meaning I will be late in for work. I think it should be ok.

Now just trying to work out when I can go on holiday in between work bookings and potential scan dates. Tricky business!

We were going to go to Spain to stay at a friend's house whilst they are not there but that was where we had our first M/C so it feels a bit "bad juju" to go back to the scene of the crime under the circumstances! I think we might find somewhere else to go.

kittens good news re: fleeting spotting. Dark brown is good as well. Fingers crossed its just implantation/old blood.

Thanks free -it's always reassuring hearing from 'success' stories! Did they do any tests after the weening or is just a matter of waiting for the next scan at 24 weeks for the next crumb of reassurance?

Kittens Well done on the BFP! Fabulous news! I'm glad to hear that the spotting has passed. I have had AF style cramps in every pregnancy I've had including this current one so I think that's quite normal. Glad to hear you've sorted the intralipids.

Bertha I'm not sure whether my side effects/symptoms are from the Pred, the Cyclogest or just the pregnancy! I am experiencing nausea, exhaustion, headaches, horrible taste in mouth, very sensitive to smells, dizziness, sore boobs, bad skin, bloating and hairy face! No lumps yet though! It's definitely not glamorous but I am waiting in hope of blooming in trimester 2

Mightbe Hello, glad you've found us and I hope that the steroids do the trick. As you can see there are quite a few success stories now with actual babies!!

Big waves to all

Kittens, so relieved to hear things are better for you this morning, that's great.

Thanks Freelance and Bertha, it really helps to hear about others' experiences. I don't know anyone in 'real' life whose been through this so it's nice to talk to others who have. We had been hoping for intralipid treatment but were offered steroids instead so I am a little disappointed but hoping it will work out with the steroids.

kittens - Thank God. FWIW I had brown spotting with this PG which freaked me out, but all seems Ok :)xx

Wave to everyone else - I am knackered today so apologies for not name checking xx

mightbe, there is a bit of a sliding scale of treatment. The ones with High NK Cells are just on the 25mg pred and no intralipids, then there are the ones with Very High NK Cells who are on 25mg pred until BFP and then 40mg pred plus intralipids, they don't seem to prescribe the intralipids in Mr S's NHS clinic, regardless of levels. Some people are also on hydroxychloroquinine. The ones who have miscarried on the treatment previously. I am also on these due to the fact that I've been on the pred so long whilst TTC that I needed to give my body a break. But now I'm taking 40mg pred since yesterday's revelation.

bertha, the pred seems to have a really variable effect on people. Some people hardly even notice they are on it and some have stronger side effects. I was lucky in that I haven't had any problem with insomnia (I am a bit of a sloth though), I don't know if that will still be the case on the higher dose I am now on. I do hope not with the hours I'm currently working! These were my main side effects - shaky, quite manic and agitated, popping ears and dizziness, hunger, thirst and my hair has gone really brittle and fuzzy. I already had an exceptionally hairy face and ropey skin so I don't know if the steroids have made that worse or not, or whether my beard is getting more profuse with age! I do have a few lumps on my neck actually but I also have them on my face and I think it's a form of keratosis pilaris (although, self diagnosed) as they seem to come up wherever there has been attempted hair removal and they are quite hard plugs. I can't actually remember whether they were there before the steroids or not, I've been on them so long. God, don't I sound a picture.

Thanks everyone for your reassuring words. You all know too well the neurosis so I don't feel too embarrassed by my fretting!

Here are a couple more questions to those in the know - Cheryl said to arrange fist scan for 6-7 weeks. What's the earliest time you'd normally see a heartbeat? I'd rather hold off a couple of days and see something for sure if there in indeed something to see rather than going and not seeing a heartbeat purely because it's too early and then not being able to relax for the next 2 weeks. And the next question, how many intralipid sessions do I need?

Bertha - I got bumps on my neck, and in fact they're still there a bit, even though I've only got five more days before I finally finish weaning of the Pred.

Hi all - I've posted this on the SO thread too, but know you don't all look there.

Big hugs to all those "mentalling" about tests, symptoms or lack of them, and huge fingers crossed for you all. Also big hugs to those of you dealing with bad news yet again.

Not posted for a little while, but thought I would today to share my thoughts and see if any of you can help a little.

My story briefly is that I have two older children (15 and 13) from my first marriage. I have now remarried and that's when I realised I had problems with keeping a pregnancy. I have been pregnant seven times in the last two and a half years.

The first 1 happened, the next 4 were with the NHS, and the last 2 since I have been seeing Mr S. I have had 3 ERPCs, the last of which was two weeks ago.

I have v high NKC. And conceived the last time on the first month of SO.

We had decided as a couple that this was to be our last try. Both financially and emotionally it is draining. We also wanted to get to a point where we could have a "definite" to deal with, be able to know where we stood, count our blessings, grieve, but then move on with our lives.

I am seeing Mr S on Tues 14th next to get the results of the testing they did on the "products" from the ERPC. If there was something wrong with the "baby", we may be tempted to try one more time, but it would only be one more.

When you get to a certain age (I am just 41), and you have these problems, you can't help but wonder if all your eggs are not good enough - never mind the other problems you may have (NKCs), and that you are just getting your hopes up yet again for nothing.

I really don't want to be in a position where we keep trying, bankrupt ourselves, perhaps put a strain on our relationship, in some futile attempt to have a baby, as much as we long to have one of our own.

I know there are no certainties - I suspect many of us would keep going and finding the money if we knew we'd have success one day.

I just want Mr S to tell me to stop, that we have tried everything we could, but I asked him this on our first meeting and he said he'd never say that as there's always hope (unless there is some medical reason eg diabetes). I do worry that we keep putting ourselves through this needlessly. I also worry from reading this thread and the SO one that there is several more things to try (gonal f, IUI, IVF) - and that we could in theory still be going through mc after mc for years to come.

When to draw that line?

LJ71 I guess the difficulty is if you've had 2 mc since seeing dr s then it might not just be the nk cells causing the issues. I was a high boarderline v high nk case and started seeing dr s a year ago. I wasn't conceiving despite having conceived 3 times previously and mc and trying SO and IUI so we did ivf with CGH. I was sure my eggs were bad ( one mc was trisomy chromosome issue). I for pregnant with twins they put 2 seemingly perfect
embryos back but I still mc in April despite being upped to 40mg pred, 2 lots of intrallipids and clexane. I was going to give up we'd spent about £14k on everything and was discontent. Dr s was not really bothered about 2 failing despite being chg tested. I did find out on here about the level 2 tests that go to Chicago and the hidden infection tests and dr gorgy found me and DH had hidden infections which he says could well have been the cause of my immune issues and mc. Also DH sperm was highly fragmented. Now we've finished antibiotics for a month and my nk cells were re tested and are within normal levels. Point of my story is sometimes the cause of the mc is something to look for especially if you've had 2 dc before! I presume you've had all the standard nhs testing ? Infections and immune issues seem most likely to be something that develops rather than an intrinsic issue holding you back. Your partner might be an issue have u looked at DNA sperm
Fragmentation testing ? Is more in depth than standard volume, count, morphology testing...