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

Am on iPhone in Chicago so sorry for some replaced words like " discontent" is difficult to post with this phone and slack wi fi!

I said something to my OH this morning which, afterwards, struck me as rather amusing and something that would sound rather outrageous under different circumstances.

I think these steroids are really going to help me get through the Olympics

I asked this the other day but I'm still wondering, what's the optimum time to have the first scan? I don't want to go too early to see a potential heartbeat as I think that would be too excruciating to bear, waiting another 2 weeks to see if it's viable. I've done that far too many times already! Also, when do you have your following scans? I'm trying to work out when we can go on holiday, between mine and OH's various freelance work bookings and scans it's a tricky business. I've read a lot of you saying the 9 week marks is a milestone in Mr S's eyes. Is that about the stage you'd have a second scan?

kittens I opted for my first scan at about 6+5 I think. I was like you - and wanted it nearer the 7 week mark than the 6 - more chance of seeing a hb. I then was scanned every 2 weeks until the 12 week scan. After that I had one at 16 (had amnio then too), 20, 24,28,32,36. This was with the nhs so I am lucky. I know Mr s says the 9 week one is the milestone, but after having lost 2 at 10 and 12 weeks after seeing a hb at 9 weeks, then I didn't really go for that. For me the 12 week scan is my milestone. Of course after that, then I think it's 16, then 20 etc etc and so on.

Now I am only a few days away from having the section - and I am still mentalling!!

kittens some time after 7 weeks 7+ a few days would be ideal as u should see a HB then. If you wait until 9 it really means a month of being/feeling pregnant and if there is only a sac it's that bit longer and that bit tougher in my opinion. I've discovered bad news at 10, 12 ,7 , 5 weeks and there has been some correlation to later numbers and pain in an approximate way. 5 was just bc I was bleeding red blood and 7 was an early precautionary scan. 10 was bleeding red blood and 12 was nuchal scan trisomy issue. I think you've had later losses so I know it's a hurdle thing. Absolutely nothing you can do more than u already are anyway k so on a positive note a 7 + then a 9 + then a 12 + always sounds ideal to me.

P. S is this another hydroxy bfp?

Hi 'kittens' If I had the choice I would not have any scans until just before the 2nd set of intralipids as there is no point in having them if no heartbeat. The other issue is your own health re ectopic pg. An early scan should rule this out. I hope this helps.

I had my first scan at 6+5 and a heartbeat was seen. I needed an early scan to rule out an ectopic (as I have had one/risk of another). After my last miscarriage I made a decision not to have any scans earlier than 6 weeks.

battery how did you get the post 12 week scans via the NHS? Was it offered after your nuchal scans or did you push for it? I was told at my 10 week scan that, with the exception of the 12 week one, I'd unlikely get scanned again until 20-24 weeks, and then maybe once again. Obviously after all my reassurance scans I am a wee bit nervous about this...

Oddly I picked 6 weeks for first scan last time as I wanted to know it was unlikely there'd be a hb (to take the pressure of). And as it turned out, there was a hb.
Bertha I had a mixture of nhs and private scans with last pg - some with Mr S, but also ones at local private scanning place (£75, and then £50 for a repeat one). I'd the anomaly scan on NHS at 20 wks, growth scans at 30 and 34, and also about 3 extra scans when I thought movement had reduced in the later second/third trimesters.

Quite a mix of opinions then! Cheryl said I should arrange the first one between 6-7 wks so maybe if I got for 6+4 that will work. I am having my first set on Tuesday so that will be 4+4 so maybe if I try and arrange my following scan at 6+4 with the intralipids straight afterwards the I can save myself two trips to Epsom and have my scan before forking out for the second intralipids. Then, if I have the next one between 8-9 weeks that will be just before my next window of opportunity to go on holiday.

duggs, sort of but I'd only been on it for 2 weeks before conceiving. So, I hadn't been off pred very long at all but the main notable difference being that I wasn't on it at the moment of conception, where I had been before. Interesting....

bertha. After my last MMC my NHS consultant was at a loss to explain why it had happened. I had 6,8, and 10 week scans and everything had been fine. I went for the 12 week one, and no HB. The baby measured 12 weeks, so the sonographer thought the baby had died about 48 hours before the scan. After my ERPC showed no abnormalities - my consultant basically said 'right, the next time you get pg, we will scan you as much as you like'. So thats how I got all the extra ones. I also have factor V leiden so they wanted to do doppler scans to make sure the blood flow was OK. I had been referred to St Marys in London too who recomended that I have extra scans past the 12 week one, so he followed their advice too xx

duggs
how did you get these tests done to check for hidden infections. what was the process?

Oh these were with dr gorgy but they can be done at the lotus clinic directly. sue was one who put me onto them thankfully. PM me if you'd like more information.

Hello all,

kittens, congratulations on the bfp, such good news. I hope you manage to squeeze in the intralipidsand that go's well.
In terms of scans at the fertility clinic I go to they tend to suggest 6 weeks ish and then 9 weeks (I manage to get an extra one thrown in due to mc history).
olives your symptoms sound very reassuring! I have been getting a bit of nausea again the last few days and I have found it reassuring but then makes me worry even more when I have a day of feeling normal!
sarah all the best for your scan next week.
Hi to mightbe, when will you start your ivf cycle? Wishing you lots of luck and hoping that the steroids do the trick. I have not found the pred too bad. I started on 10mg from day 7 of cycle then to 20mg on bfp. I found that when I upped the dose I had a few days of feeling a bit high and didn't sleep too well, otherwise it's been ok. I have put on weight but have been eating a lot more too.
Lj i am sorry to hear about your losses, 7 over a couple of yearsmust be so hard to deal with. I agree it is difficult to know when to draw the line. I think you will know in your heart of hearts when that time comes. After my second mc I applied for an adoption pack from our local council and i am still really open to that. I think for me i need to be sure that we have exhausted all options before we go down that route and give it the 100% it needs. If this pg doesnt work i would like to try intralipids and perhaps a higher dose steroids. We also have a couple more iui and an ivf on the nhs so would use those up. After that i think i would feel i had tried it all. It is all consuming though and takes over everything.
Hello to everyone else, sorry to not name check, I am on my phone and it's a bit tricky.

I had another scan on Friday. Was supposed to be tomorrow but I brought it forward (in fact I made DH come back from our holidays 2 days early to fit it in). I had a really bad feeling of dread last Tuesday and convinced myself it had all gone wrong again. Luckily the clinic were understanding and let me go in. Amazingly it still all looks good, measured exactly 7weeks and 3 and had grown from the week before. I really need to find a way to relax. I now don't have another scan until Friday 17th and don't know how I am going to keep sane, particularly as this is the period in which it went wrong last time. We are heading to London next week to visit friends for a few days then heading to Brussels for a long weekend, I just hope I can relax and enjoy it.
X

Hello me again.
Just a quick q for those who use cyclogest pessaries. I am on the 400 dose ones and after my first scan the consultant changed my prescription to 2x a day rather than once. I did this last week but it was causing me loads of grief (I have been told to use as suppository). The evening one is manageable but the morning one was giving me ahem repulsive greasy leakage and alternating bouts of constipation and really awful mucussy diarrhoea. At my second scan I mentioned this and he said to go back to one a day. Are most of you on 1 or 2 per day?
Sorry for v me, me, me post.

jemima I was on 2 a day and I put them both in at night. I asked the dr if it was ok and he said it was fine. I used them as suppositories too as I didn't want anything near my cervix to irritate it x

battery, brill thanks for that. I will start doing 2 on an evening.

Jemima Im only on 1 a day but I am getting the mucosy diarrhoea at times too. So delightful!

I'm on one day but use the front entrance, so just a revolting snail trail in the morning rather than diarrhoea! Nice.

Aaah the delights of cyclogest! So grim either way you use it (so it sounds). X

Hi ladies,

Am on the laptop so I've attempted the list, please adjust if I've cocked up! Had a scan this morning and BabyOlives was going for Olympic gymnastic gold, very wriggly indeed It's my Nuchal scan next Tuesday, can't believe that everything still seems to be going ok Advice please I am 12 weeks on Saturday so I'll need to start weaning off the Pred, did everyone else start weaning at exactly 12 weeks? I'm a bit nervous about it but equally I am looking forward to not having the rubbish side effects!

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 ? 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS

BFP 3rd Trimester

batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 37+3
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 33+3
Mercator - V High NKC, DC#2 33+3 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS 14/09/12
Hopefulfor2nd - High NKC - TTC#2. ? 32+1
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 32+1

2nd Trimester

PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 27+4
HelterSkelter (IVF and immune therapy) 17+6
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 15+3

1st Trimester

Bertha337 - High NKC, 1 ectopic, 2 mcs, est 11+3
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 11+2 Next scan 14th August
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 11+2
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 8+6
Jemimapuddleduck - 8+1 and heartbeat seen. Next scan TBC.

BFPs awaiting first scans

Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July.

TTC ? ASSISTANCE - SO/IUI/IVF

EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w).
Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
duggs1976 - TTC#1 4 mcs all 7-12 weeks. High/V High NKC - TTC #1 - IVF cycle #1 ?pred, intrallipids, metformin, clexane, cylogest
Havingkittens - TTC#1 4mcs between 6-8 weeks, 2 Downs. Upgraded from High to V High NKC -12 pred replaced with Hydroxy 10/7/12 ? 5th cycle SO
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),
eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, SO

TTC

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
LJ71 - mc on treatment
London - High NKC, April - mc on treatment.
ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Carebear1 - V high NKC
Gransol - Seven mcs - all losses between 6 & 7 weeks
Mollieboo - 5 early mcs between 4 & 10 weeks, 1 premature birth (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

Current status?

Cherrycheeks - V high NKC, TTC#2
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid, 2 mcs on treatment?
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine

Thanks jemima. I am having them at home tomorrow. Might have to phone work and pretend I have a family emergency that will make me a bit late. I'm only on one cyclogest a day. They are pretty grim but if find that my best option is the tradesmen's and only at night. I can't be doing with the greasy inner thighs I experienced with using the front entrance, even if I did it at night. So far I don't have anything more unpleasant than one big greasy poo in the morning, and then all is ok. I do have rather sensational wind though. Not sure if it's the pred, pregnancy or cyclogest or all three.

olives, on my treatment plan it says to start weaning off at 9 weeks. Maybe that's only if you're on the 40mg though. Have you checked on the password protected bit of Mr S's website? I would say it's best to follow his advice.

It's v quiet on here. Are people on hols? Haven't heard from pq, sue, mercator amongst others for a little while. Hope everyone's doing ok.

Hey kittens how are you? Sorry to have gone awol so long. Was over the moon to see about your BFP. First step! Really hopeful for this one for you :-) Are you on different drugs this time?

Huge congratulations to digi, free, coconut, stogan, comedy, iggi, brownie, charlie so pleased your baby dreams have finally come true. I hope it's as amazing as I imagine it to be! Also so pleased to see pq and sue getting so far along now! battery and coley touching distance!

Sorry haven't caught up with newer posters yet (probably not all that new, but I have been absent a long time), I will go back and read your stories in a bit.

Welll... I got to 7 weeks and just had a bad news scan. Was so hoping to have something to cheer about but not to be. The scan showed just a sac with possibly something in it but not baby-shaped and no heartbeat. I have always seen a heartbeat at 6+ before. I have been cramping for a few days but had sickness & diarrhoea so I thought I'd picked up a stomach bug. Since the scan I have started proper bleeding, migraine and squeezing cramps so I know where this is headed.

Now at home waiting for the sac to pass (sorry for tmi), another one I have to capture and take in for testing so under house arrest with my little tub. Might seem a stupid question but presume they can still test the products if there is very little growth?

I was so hopeful this time, had been on hydroxy for 6months, 40mg pred, 150mg aspirin (in case of TEG), cyclogest and the vitamins, selenium etc as well as a complete change in diet and lifestyle in a super-healthy direction. I couldn't have done more, but it looks like this is just a very random unlucky one for me.

Just hoping this happens quick so that I can start the weaning process and the break. Feels a long time til trying again.

Sorry to bring a downer, I had so hoped to be writing good news today.

Oh scooter, I'm so very sorry to hear that. That's are ally f*ing rotten .

This is my first pregnancy since being on Mr S's treatment (only take me 17 months!). I have been on hydroxy since my LMP, now on 40mg pred, intralipids tomorrow, 75mg aspirin from BFP, and the rest of the usual...... We'll see.

The nurse just called to say she will aim to be at mine between 7.30 and 8am tomorrow for intralipids at home, so I may well get to leave for work on time butit will be pretty gruelling. I will get home from work at 1am, up at 7 for a quick shower and dress, then hopefully doze a bit and then put on make up ready for work whilst I'm being "infused" and then come straight to work until midnight. Lucky these 40mg pred are keeping the pregnancy tiredness as bay!

I am dreading the intralipids a bit because I know they will remind me of the protein drips my mum was on for her last months.