TTC/Pregnancy on Prednisolone or similar part 6

[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 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 choccy how awfully shocking for you and your family. I really don't have the words for you honey. May you find the strength to get through these coming weeks ahead. We are all thinking of you and wishing you all the strength. Xx

Choccy I'm so sorry to read your awful news Thinking of you and your family at this devastating time. I hope your pregnancy gives you the strength and determination to get through the next few months. xxx

Oh Choccy, I'm so sorry to hear the awful news about your dad. Thank goodness you were able to tell him about your pregnancy. I really hope you've got lots of RL support around you at the moment. Wishing you lots of strength to get through everything that you've got to face now. xx

Choccy what terrible news - I am so, so sorry for the loss of your lovely dad. Be gentle with yourself during this amazingly hard time - sending you wishes for strength and eventual healing. xx

Oh Choccy, my love, I'm so very sorry to hear about your Dad. Like everyone else, I'm glad you had a chance to tell him about your pregnancy. I would also say, ignore the CBs, they have a notoriously bad reputation for causing a lot of worry with incorrect results.

Sending you lots of love and strength to get through the difficult times ahead. xx

choccy so sorry to hear your sad news. I hope it gives you some comfort knowing your father knew about your pregnancy. Thinking of you at this difficult time.

Hi digitalgirl, As I had already had 6 MC's, 2 of them Chromosone I went on Pred in 2009 for the first time and then had my DS so I thought that the pred was the answer to all my probs even though I had not been diagnosed with any issues re NKC. Dr S said take them anyway just in case there is another underlying issue. Since mid 2010 I have had 4 more MC. Aftet the first 2 I was diagnosed with VNKC so they increased my Pred but I still had 2 MC's late last year so now I am on SO programme to give me every chance of getting PG as I am now 44. I was described as having possible Primary Antiphospholipid Syndrome so I did take fragmin previously but I haven't taken it on the last 3 MC's (DR S stopped recommending it). All previous treatment was on NHS but after last MC I wanted to go private hence where I am now on SO programme. This time I have said that I want Fragmin (blood thinning), intralipids and anything else I can have and Dr S agreed to throw the book at it. So I will be 14dpo the Tuesday after Easter so let's hope it is good news. Please add me to your leader board and hopefully you won't just see me going round the bottom before dropping off due to age . I will copy and post full history from the SO post.

Dear Freelance Not sure if you will have the cookies so early in the morning but I have copied over my history from SO thread. Here is 1/2. I am 44 and I have 1 DS born 2009 on pred, Fragmin, asprin and other vitamins. I had 1 MS at the age of 26 and then from the age of 36 to 40 I had 6 more, 2 chromosone and 4 straight MS. Then I had my DS. It was the 1st time on pred so I thought I had cracked it. Since 2009 to my horror I have had 4 more MC, 2 in 2010 and 2 in 2011. The majority of all my MC I have seen heartbeat and then it stops at 8 to 9 weeks. I have in the past got pregnant relatively easy but due to my age I wanted to go on the SO to give myself every chance. I have my 1st follicle scan on Tuesday with DSh. Since this scan I was told I had 2 follies/eggs that were the right size and the lining was fine so all good news. Now waiting to test for a BFP Tuesday afer Easter. I do have very high killer cells but I had no issue when I had my son i.e. NKC was not an issue and neither was 'sticky' blood which just came out as borderline. In all my pregnancies I have been on Fragmin 3 times only. Not the last 3 times. This time I insisted on Fragmin and also intralipids. To be cont....

2/2 Further history xxx when I went through all the tests prior to my DS I'd had 1 Molar Preg, 1 Edwards Syndrome which is much worse than downs and then I had 4 MC's. On the 3rd MC I was told to take fragmin injections and asprin. Dr S discussed steriods but I was unsure due to side effects. At this point in time the results on the NKC's was negative i.e. there was no issue but the sticky blood was borderline and the letter I found the other day said that DR S thought I had mild primary Antiphospholipid Syndrome, therefore recommended fragmin and asprin. Fragmin being the daily injections that are taken as soon as you know you are pregnant (blood thinning). I did change my mind about the steriods i.e. I decided I would take them but Dr S said no I was not being treated for NKC. Anyone this one failed (being the 4th straight mc). I guess the 1st 2 MC's I had in my 30's can't count as they were chromosone problems i.e I had a reason for failure. The 7th preg in my 30's was of course my DS. First time on low dose steriods (just in case there was an underlying issue that had not been detected), fragmin, asprin and vits. After DS was born when I was preg again I took low dose steriods, fragmin and asprin. At this stage they didn't want me to take fragmin as they stopped recommending it. As I was pregnant they saw the horror on my face and said that I could stay on fragmin. Anyway this one led to failure. Heartbeat then no heartbeat. The 2nd MC was early about 6 weeks low dose pred, asprin but no fragmin. At this point I still did not know I had VHKC as I had not been tested since 2006/2007. When I went back to see Dr S his colleague ordered a new set of tests. To my surprise they said I had VHKC (3 something). They said I should take the higher dose of steriods but as I was already pregnant I did not take the higher dose until 2 weeks after I conceived. Anyway I lost this one at 6 weeks +. For the 3rd MC I was on higher dose of pred, asprin but no fragmin. I was concerned about not taking the fragmin but I guess you have to go with what the dr is saying. Anyway this was another early failure. After the 3rd MC Dr S colleague also recommended intralipids if I got pregnant again. Well I did get preg quite quickly but noone would give me the intralipids. They didn't explain why they just said it is not recommended. The last one (4th MC after DS was born) was the most horrendous one was at christmas (just gone). Early scan showed heatbeat then I had a bleed at about 7 + weeks (fresh blood when I stepped up the step into my home). I honestly thought that was it again MC! Went for scan the next day everything OK. No issues. I was so emotional as I did not expect to see heartbeat. Went again for a scan 8 + 5 days and the hearbeat had stopped. Totally devastated. All of the above was on the NHS. After this 4th MC I decided to go private as the appointments on NHS were getting few and far between. When I went to DR S privately I raised my concerns about not being given fragmin and the intralipids and he agreed to throw everything at it so here I am now first cycle of SO and waiting to see if I get a BFP Tuesday after easter. Sorry about the long post . Got to go tram spotting now with DS. He has started young!

choccy just thinking of you, hope you're doing as ok as you can be this morning. hugs

choccy just wanted to say how sorry I was to hear about your Dad.

Hi all,

Abney thanks so much for the info. What an awful journey you have been on. I can imagine that feeling that you have cracked it when you had DS only to miscarry again several times more after that. So glad too that Mr S is now throwing everything at it. I will indeed add you to the list and it's nice to have you on board with our merry band of hardcore drug neckers.

Choccy I know you are probably going through a surreal and a horrible time but I hope we can be some help to you at least with the pregnancy side of things. Please do feel you can talk to us about anything.

Duggs I forgot to reply to you about the IVF, 13 potentials is brilliant! Grat news. Yes please do keep us all updated as to how it goes. I know Pebbles has filled me in on the ups and downs of IVF and you are in for an interesting ride. Maybe interesting is not the right word, but you know what I mean.

I am hanging around just doing some last things before going to Spain but normal service from me is likely to continue as I am going to be working from Spain - it's more 'going home' than 'going on holiday' so I will be around as normal I imagine.

I had a bit of a freak out yesterday as I tried on a dress that was full of static and then started googling electric shocks and pregnancy (not that I had an electric shock) but apparently static really can't cause any issues. It made me feel very insecure about the whole thing again though. Realistically I can't believe it is the 1st April and I am still actually pregnant. I would never allow myself to visualise it this far ahead. Only 2 days to go until potential viability. I know that isn't everything but it is at least another milestone.

Hope everyone else is ok, do we have any scans in for this week?

I have amalgamated the three TTC sections into one - waiting to test and TTC. Anyone with better organisational skills than me feel free to edit! Keep positive everyone, the BFP lists are growing all the time and the babies really are becoming a reality. This is great news for everyone as it means the treatment does work. The pregnant people are not just normal pregnant people, they are pregnant after several miscarriages and all sorts of other issues. We have to hold onto that! There are now almost 40 of us on here! Incredible stuff.

Sunday 1st April

The babies are arriving!
Stogan - V high NKC - cycle#2, DC#1, Baby girl born Sunday 11/03/12 7lb13.5. Our First Pred Thread Baby!

BFP
3rd Trimester
Digitalgirl - High NKC - BFP cycle#2, DC#2 37+6 Due 16/04/12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 34+6 Due date: 07/05/12
Comedy - V High NKC - BFP cycle#2, DC#2 ? 34+1 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 31+5 c-section booked for 21/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 31+2

2nd Trimester
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. DC#1 23+5 Next appt with Mr S, 19th May
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 23+4
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 20+2
coleyoz - V High NKC. DC#2, BFP cycle2, 20+0
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 15+3
Mercator - V High NKC, TTC#2. 15+2
Hopefulfor2nd - High NKC - TTC#2. - 14+3
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 14+3

1st Trimester
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 9+6
ChoccyPud - V High NKC - TTC#1 from March (Pred & Hydroxychloroquine) 5+3
London - High NKC add details!

TTC
Waiting to test
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 2
Abney, V High NKC, TTC#2, super ov.

TTC
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
buster76 -V High NKC, Factor V Leiden.
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2
eurochick - TTC#1 High NKC, pred cycle 4,
Willitbe - RMC, NKC not tested, TTC #4 cycle 2 (after m/c 12) Fertility consultant prescribed pred.
duggs1976 - High/V High NKC - TTC #1 - IVF cycle
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, combining IVF with Immunotherapy
GreenOlives - High NKC, TTC#2, Pred Cycle 2
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
Cherrycheeks - V high NKC, TTC#2
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
picolina - V High NKC MC on treatment
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS
Suemays - V High NKC, TTC #2. Superov. (Pred & Hydroxychloroquine)
Holldoll - High NKC - Pred, Cyclogest & aspirin

I'm so touched by all your lovely comments. Am focussing on looking after babychoccy (not sure I'm ready to be quite that optimistic it's so early, but will go with it for now!). Today I am 5 weeks 3 days pregnant. I am further along than Nov/dec's pg and it is a year today since my ERPC. All milestones ticked off for the week and no reason to suppose anything is amiss. I will let the grief come as it will but all my mc's have made me only too aware of the stages of grief but more importantly there is no doubt I will get through it. Dad's watching over this one too, we're throwing everything at it, and I will not let go of my focus and positivity for this pregnancy. I just won't.

I imagine you'll find me ranting a bit or not making much sense or repeating myself. But I can't thank you all enough for past present and future support on all fronts.

Choccy if the strength of all the positive vibes we are sending in the direction of your growing baby means anything I am sure this one will be a keeper. So much energy coming in your direction - from your dad watching over you, from all of us and from, I am sure, everyone who knows you.

choccy I belatedly wanted to pass on my condolences. I was so sad to hear your news. I don't for a moment presume to know exactly how you are feeling but if you want to talk about your lovely dad in RL let me know. I thought I would be able to say the right thing, thinking about how I felt last year but I still can't quite find the words. Just know that I am thinking of you.

The only thing that did cross my mind to mention is that at dad's funeral an extraordinary number of people thought it was a good time to talk to me about ttc and how we were getting on. You will need extra thick layers of emotional armour to protect you on that front if that happens.

As an aside, I can't bring myself to tell mum and sisters that I'm pregnant as I didnt want to then bring them down with bad news, mum especially as she is still so up and down. If the NT scan is ok I'll tell them then. I think. Though I think my youngest sister is onto something. She is an a&e nurse and very practical and scientifically minded but also a bit of a hippy (that is not meant in a derogatory sense in case anyone here identifies as such - i cant think of a better way to describe it!). She called me last week and said that my "spiritual guide" had come to her in a dream and said that I needed help as I was very anxious and there was something going on. She asked if I had anything to tell her and still I couldn't!

free thank you for the list! And for your positive words. When I mention my history it's not because I am looking for sympathy (and I know many people, including people on here have been through much worse) - it's because back when I'd had two mc I thought I was all alone in the world - ha!- and now I really really hope that one day soon I'll be inspiration to someone else.

Have a wondful time in Spain.

My next scan is on Thursday (St thomas'). St t's also accepted me as a patient and squeezed me in for a booking in appt and scan when I am (fingers crossed) 12+3. I'm afraid my rather negative (pragmatic?) frame of mind has figured that because it's been so easy with booking in then there'll therefore be something wrong with the scan. Someone slap me quick!

Have also taken my head out of the sand briefly to realise that we need to book some hotels and a hire car for our holiday to Florida in 3 weeks. You may recall this was the holiday that I decided to book when we were ttc as it would guarantee a bfp if I did book and a bfn if I didn't! Refuse to get out maternity summer clothes until 12 wk scan so will have busy two days packing (or shopping for summer clothes two sizes bigger than my current wardrobe).

Hi to London and abney and for sharing your story.

No April fools day baby after all digi ?

duggs looking forward to update tomorrow. Am on the edge of my seat!

Havent dropped in for a while but just wanted to say how very very sorry I am to hear about your father Choccy x

Duggs - great news so far and really wishing you all the best for the next step of the journey.

Hi to all and wishing you a peaceful lead in to Easter.

choccy im really sorry to hear about your dad, i lost mine about 19 years ago and it was one of the worst experiences, looka fter yourself like you are doing .
pq have you told anyone ? you need people around you who understand as well, esp with the mentalling .
abney welcome. i cant imagen how you must be feeling , esp to this this was sorted and you found the reason for everything and have to go through that horror again and again, im really sorry. you are in the right place for whatever support you need.

ive been checking my temp, fluid and doing the ovulation monitor ( which i reset) just to check if the pred messed around with my ovulation . i didnt notice my usual fluid, my temp went up for 1 day then to 97.8( normal is 97.4) and usually after i have ovulated 98.3.
my fertility monitor which i forgot to do from day 1 so just pushed it to day 6 so i can start testing has had 3 days of med . i should have ovualted by now. is it all to early . may have to take my monitor on hols with me to keep an eye on things .

Morning all
Just thought I'd have a quick catch up over the morning feed and see if we have a baby digi yet !!

So sorry for your loss choccy huge hugs Hunni. Xx I lost my dad 9 years ago and truly was awful you never forget babe but u will learn to move on as hard as it seems right now. Look after yourself Hunni xxx

Hi to everyone else

No baby yet! Am 38 weeks today - which feels a little bit like my du date as I've got 2 weeks left to get this baby out before we start looking at an induction. Tried to keep busy yesterday and went for a walk in the park yesterday but it didn't seem to make much difference.

abney what a heartbreaking history. Really hope the pred & fragmin works next time. Are you also going to take progesterone?

choccy thinking of you - hope you get through the week ok, it's your scan next week isn't it?

duggs lurking for news of how those embies did over the weekend.

free how's the weather over there? There's forecast of snow here this week! After such a glorious week last week, I even got sunburnt.

Welcome to Abney and thanks for telling us your story. It sounds gruelling. I don't know much about fragmin, is it similar to clexane?

Choccy I hope you're doing as well as you can be at the moment.

Another one lurking for news of Duggs and her embies.

Pico are you charting as well? Does that give any indication of whether things are different this month?

PQ - I can relate to your anxiety but like pico says, have you got anyone in real life to offload onto? Saying that, I did tell a couple of friends in RL but, unless anyone's been through it, they don't really understand do they.

Digi - You've still got loads of time for things to happen, but I totally understand your frustration. is there a particular reason for induction at 40 weeks rather than going over?

I had a slight panic this weekend when I realised that I'd completely misread the instructions on the lactulose bottle and had overdosed quite badly. It all had the desired effect, but it also seemed to trigger some quite bad braxton hicks for the first time, and when I started to get a really achy lower back I was getting worried that I was beginning to go into labour! Anyway, it's all calmed down now, and has forced me to get a bit more organised. I now have a clean car seat, a moses basket and some newborn baby clothes so will be fine if it does all kick off. I think it's also a sign to slow down so I was rather relieved when I had to take the day off work and stay home with ds who has a really high temperature (but is fine in himself) so nursery won't take him. Only one more day of teaching tomorrow and then it's Easter holidays and I'm only going in for three days after that before starting mat leave and hopefully getting some rest.

Hi Arainhod I was on steroids from weeks 6 to 12, but since the 12wk scan they have been weaning me off them. Down to 1/2 a tab every other day now and stop completely this Friday.

Battery well done on 20 wk scan. Is that it for routine scans now or will you have more?

Freelance I'm at ARGC no with Mr S. Because of my levels they don't believe Soya/Intripilids will be so successful. However I really can't go to a 4th so if my levels are still higher than norm when we test again in 3 weeks I will go Soya anyway as just can't afford another IVIG. Will just have to risk it.

Green / duggs IVIG is a human white blood cell product that is given intravenously to conunteract NKCs. It usually takes between 3-4 hours to administer.

Hey ladies.. hope people are ok. Thinking of choccy a lot. Congrats on scans can't believe you are so far dunnit.

Just got a call from clinic and down to earth with a bang. The 19 eggs turning to 13 isci fertilised on Saturday have dwindled to just 4 good embryos today. I guess that is average and I should be pleased but those 4 r being sent for CGH chromosonal testing now. Results and egg transfer tomorrow at 1.30pm. She said I was now on normal stats at this stage do am desperately hoping one of my 4 embies is normal. She did say there is obviously an egg quality problem for that drop off rate.. I am quite annoyed as Dr S continiously said there is " NOTHING" wrong with your eggs you are only 35 but deep down I guess I knew there was. Let's face it, if NK cells are the only issue - if we are taking the drugs month after month, having Super Ovulation and IUI and STILL not getting pregnant then there is something else amis. Surely. Free and PQ etc can't just get PG pretty much every attempt and struggle as they did with immmunology and be the standard case for everyone. Anyway now I have another waiting game until tomorrow at 1.30pm when the CGH chromosonal results come back. Standard IVF they would put one of the 4 back in me and cross their fingers. If all 4 come back abnormal Mr Duggs and I have said that is that and we will have to look at egg donation. Just trying to get my head around the possibility. (Will go to Argentina and find gorgeous person to put back inside me ;0)
Anyway I still need to be positive as I hope at least 1 of those 4, is normal and has a chance of giving me a baby.
Sorry this is all about me. But right now NK cells is not even on my bloody radar. Think if we hadn't had such a high starting number there wouldn't have been so far to fall. It's not over yet though.. 2 and a half more weeks of agnoising unkonwn. Bring it on..

Bloody hell Duggs, what a waiting game for you. I really hope you get a goodie out of those four. Really frustrating that Mr S said your egg quality was fine. I've got everything crossed for you. xx