TTC/Pregnancy on Prednisolone or similar part 8

Hello All

Great news Olives
Bah Freelance re house move
And hurrah for good pregnancy news

Sarah I was told by the consultant today at West Middx Hospital that St Mary's guidelines are now clexane to 32 weeks for recurrent miscarriages so he was happy to prescribe it for me on the NHS. When you say double dose how much I am on 40ml (?) 40 something anyway. I went in all ready for a fight because the doc at the antenatel clinica during my booking in appt said no we won't prescribe it as we don't agree with it. So def worth an ask. Failing that the GP can prescribe it as long as they have a consultants letter so if your GP is sympathetic should be OK.

As for me 13 weeks today eek.... my nuchal results came back as a risk factor of 1 in 100,000 which I would be superchufed about anyway but given my days away from 40 age and previous bad chromosme preg it was a huge weight off my shoulders that we didn't need a cvs / amnio. Getting the consultant to agree the clexane today is another relief. Tapering off the progestertone and pred which feels very weird like my security blanket is being ripped away!

xxx to all that need it

Hi Sarah welcome to the thread, it is so useful for mentalling, advice and support as we all make this conception/pregnancy journey which is so straightforward for 'normal' people. I transferred to Mr S from St Mary's after my 4th mc in Oct and am 5 weeks pg. Hope you get lucky and your GP is happy to give you the clexane.

greenolives great news about your hcg levels, you must be feeling hopeful in advance of your scan on Friday. Where are you having your levels done if you don't mind me asking? My pma is holding out quite well and I did another digi test at the weekend which had moved from 1-2 to 2-3 weeks but my scan isn't for another two weeks. It may just add to the mentalling if I start getting levels tested but I find it odd that Mr S doesn't do it when I know places like the ARGC do it religiously.

Sue and free I'm with you on the lack of exercise, I usually play heaps of tennis and have pulled out of all my matches since finding out. One less 'what if' I reckon. Am being an armchair tennis fan instead!

free sorry to hear about the delay on your move, how frustrating, although I suppose having something else to occupy your mind helps with the mentalling a little bit?

Pq great news about your 20 week scan.

Kittens I too hope they are implantation pains and have my fingers crossed for you.

Our first list in July. HelterSkelter due to go up to the 2nd trimester any minute (is it officialy around 13 and a half weeks?) and hopefully by the end of the week we will be adding the 'waiting for scans' folk to the first trimester.

Tomorrow Charlie and I will be reaching 37 weeks, which apparently officially classed as 'term'. Agggh! It doesn't quite seem real. I guess it might seem real enough when in a few weeks we are sitting up all night crying over bleeding nipples :)

Am adding Sarah to the new BFPs list too. Anyone have any edits/additions etc please go ahead and change. If you do this on a different day to today, just add the number of days since last update onto the BFPs. It's easy once you give it a go!

Monday 2nd July

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

BFP 3rd Trimester

Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle) heart stopped around 7-8 weeks, Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 36+6 wks CS 17/07/12
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 36+6 wks EDD 24/07/12
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 33+5
coleyoz - V High NKC. DC#2, BFP cycle2, 32+4
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 29+2
Mercator - V High NKC, DC#2 28+1 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks)
Hopefulfor2nd - High NKC - TTC#2. - 27+2
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 27+2

2nd Trimester

PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 22+5

1st Trimester

HelterSkelter (IVF and immune therapy) 13+0
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 10+1

BFPs awaiting 6 week scans

GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. Est 6.2 Scan Friday 6th July
Bertha337 - High NKC, 3 mcs, scan Tues 3rd July when will be est 6.2
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 6.2 Scan Friday 6th July
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2, hydroxychloroquine. Scan 18th July when will be est 7+3
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin and cyclogest. Est 4.0.

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 -10 pred ? 3rd 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

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

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

Awaiting diagnosis

Mollieboo

I am a southeast londoner, freelancegirl, yes - Crofton Park. Where are other people in SE?

I'm on 25mg as I have high, not very high NKCs. Great to hear your GP was supportive; I think it can be hit and miss. I was hoping I was going to get a very young Asian woman doctor I saw last time who was so horrified by my history that she wrote me a referral to Shehata with practically no words! I've got an older male doctor though who I know can be a bit of a stickler, so am ready to turn on the charm faucet....

OOh enjoy the Pred Buzz whilst you have it Sarah! Are you on 40mg? I can't comment on Clexane as it wasn't part of my protocol but hopefully you can get it from your GP. My GP has been astoundingly good in terms of converting all my prescriptions to NHS ones.

So glad you have come across this treatment but it must have been awful trying for 5 years with 5 mcs to show for it. I am so glad I've been on these threads as I wouldn't have come across the whole NKC thing nearly as quickly if I hadn't.

I really hope this is the answer you are looking for. A lot of us have felt the same with the Dr Beer book and most of us (all of us?) are in the 35+ group, quite a few 40+ too.

If you were/have been at Lewisham does that mean you are another SE Ldn dweller? There are a couple of others of us on here!

Thanks for the welcome and yes, please do add me to the waiting for scan list. I've emailed Louise today at Dr S's but not heard anything yet.

I'm so glad I found this; I've been on Babycentre for a while but it's very quiet and not much goes on in the NKC list.

I was thinking today about the earlier mcs and I know we all have a journey to get here, but I feel very bitter about the years (been trying nearly 5 years now) I spent being put off investigating NKCs because it was 'unproven'. St Mary's has a lot to answer for. And my consultant at Lewisham. If I get told one more time that five MCs on the trot with decreasting gestation time are 'just bad luck' I think I will sock someone!

I saw heartbeats on all but the last two MCs, but every time they measured behind dates. I know now that that is part of the pregnancy being attacked by the NKCs, but even at the time I would say to anyone who listened, 'There's a common cause, there myust be, it's the same every time, it's like something is holding the pregnancy back....' NHS doesn't want to know!

I thought Alan Beer's book was very interesting, I was literally jumping up every few pages and going 'YES!' as things rang true. Couldn't beleive all this research has been around for 20 years.

I've got a GP appointment tonight to try to persuade him to give me Clexane. Dr S wants me to take a double dose (as opposed to not having any - very interesting reading earlier up the thread, don't really understand it) as I have two blood clotting disorders. A bit belt and braces, but at 41 years old I need all the help I can get. SO anyway, got to try and persuade the GP to give me double dose on NHS. Can't face paying for it privately as it's something mad like £5 a shot, I think.

If he says no, I can try my old consultant at Lewisham, Ruth Cochrane. She's pretty good and has always prescribed it before, though she might not let me have the double dose as she's very risk averse. WHen i was first diagnosed with Factor V it was the type (can't rememeber whether heterozyguos or homozygous) that Clexane isn't indicated for - do any doctors take any notice of that any more? It was a battle to get her to give it to me then. But St Mary's seemed more than happy to put me on it.

OK< drivelling on now! Got a bit of speedy pred head I think. Looking forward to getting to know you all and thanks for the warm welcome.

Olives that is great news!! Looking forward to the scan on Friday, really think this is going to be a good one for you.

Hello everyone and a big welcome to Sarah, congrats on your BFP, I am a new BFP too and know exactly how terrifying that is!

Just nipping in quickly to say my HCG is 19,706 today! That means it has more than doubled since Friday - yay! That's the best news I could hope for so I'm chuffed! Fingers crossed for a little Olivebean heartbeat on Friday's scan!

Hello Sarah, lovely to hear from you. Yes this is the current thread, we seem to move quite fast as there is a gathering number of us here!

From what I have heard a bit of wanton drunkenness on the 2ww never seem to do anyone any harm so don't worry about that at all. And well done for the BFP! It is the first step. Yes the cocktail of drugs is a bit hard core, but with any luck you will stay pregnant and then only be on the serious hard stuff for thre emonths or less. Pred definitely does mask symptoms, but also symptoms naturally come and go anyway. So stuff symptoms as an indicator of how things are going.

As you can see by our lists we have all sorts of stages of TTC, pregnancy and indeed 'graduates' with babies here on the Pred Thread so please do stick around and join us. Permission to add you to the 'waiting for first scan list'? It's only after that that we generally feel brave enough to go up to the 'first trimester' one.

Hello everyone else. No PQ I haven't bloody moved yet. The mortgage lender found a clause dating back to 19 bloody 67 saying the council can buy the street at anytime to raze to the ground and do whatever with. This is effectively rendered irrelevant due to the conservation order being put on the area in the early 70s. And if even the council DID want to buy it back and could, they would have to do so at market value. And secondly we are only wanting a 45% ish bloody mortgage! SO it should really be ok - but the lender wants documentation from the council and lord knows how long that will take. Humph. We are living amongst boxes and I am 15 days off giving birth. I am not around today for tea but if you are around on Friday might well be. Do you have a bump yet or are you going in the same way as when you had DS - ie very little bump? Only that soon I might be able to relinquish some maternity clothes if you needed them. Then again I think I might need a few for a while after birth too by all accounts.

Loving the compliments slip too Euro and kittens. I could have done with a few of those when suffering from the dreaded moonface myself. Kittens it's true, many of us haven't had BFPs until way after 12dpo so you're not out of the running yet.

Sue I also stopped all exercise this pregnancy. Even my personal trainer told me that was probably for the best. The way he said it was - well you carried on training throughout the two mcs you just had, why not do something different. He also pointed out that I can get back into fitness afterwards and it is not necessarily the most important thing. So all I have basically done is walk - and now that's turning into a waddle. I don't feel I have actually gained a lot of fat - now I am nearing the end - but I definitely felt I did do at your stages. I just have a bloody huge bump and baby in there.

Battery how are you getting on with movement etc? I've been ok about it all the last week or so - ever since I had my first big wobble and ended up at hospital for the trace. The baby has been doing quite a bit of rolling around in the middle. Still must be back to back as I can feel lots of unidentifiable limbs in the middle. Gosh it feels big though - feels like a big balloon ready to burst. No stretch marks as yet but I have a feeling they will creep up on me at the last minute, just to really piss me off.

Am wondering how my Due Date Buddy Charlie is getting on, although I have now I have rushed ahead of you with the 39 weeks CS. Are you getting any twinges? Are you feeling just as huge...? I think I am getting a bit of mild period like pain at night but nothing too much to worry about at the moment. The baby still feels too far up in my chest - affecting my breathing still - to have dropped at all too.

Hello to everyone else!

Wow PQ, I can't believe you're 20 weeks already. Amazing!

Welcome sarah and congratulations. Scary times, as we all know, but you can be sure of good support/hand holding/co-mentalling here!

Good luck with the move free

Oh - just looked at the dates and realised of course it's current!

I too stopped the pred at 10dpo, went out and got drunk at a college reunion, then tested just for the hell of it at 12dpo (yesterday). FOrgot about the test, left it by the bed and went back later - managed to announce the pregnancy to bewildered DH by shouting 'oh shit! it's positive'. His response... 'er, that's good, isn't it?' ha ha.

Hello! Can I join? I'm hoping this is the current thread...

I've just found out I'm pg again. 5 miscarriages after one live birth (which had its own complications with prematurity - 26+6, and severe pre eclampsia). I'm under the care of Dr Shehata, taking prednisolone for high natural killer cells, plus clexane twice daily for two blood clotting disorders (Factor V Leiden and Prothrombin), aspirin and cyclogest. A lovely cocktail... currently slightly freaking out as I'm only 4 weeks and have fading sore boobs... but I've heard that pred masks symptoms like this. Impossible not to stress though.

I'll wait to see if anyone replies before I go into a whole long solliloquy!

kittens I'm watching you with interest...fingers crossed that you've got imp pains like sue says. (and sue I'm another one who dropped all exercise, lay prone and ate her way through the first trimester to try and feel better! Appetite back to normal now).

Lovely to hear from you snoopy

free I can't keep up - have you moved in to your new house yet? Do come over for a cup of tea later if you're around (am at a school nursery settling in afternoon with DS for the first part of the afternoon. Am really hoping he doesnt bop a kid over the head with a toy or something horrific and get his place withdrawn...I don't know any of the other parents so I am also having a pathetic I have nothing to wear moment).

My 20 week re-scan was fine so all ticking along uneventfully at the moment.

How is everyone else? Sorry I've been offline for a bit and struggling to catch up! Hello to everyone I've missed.

I love the compliments slip idea! Perhaps they could expand it, so they make the Pred ladies feel a little better? Something like "No, you definitely don't have a moonface and clearly haven't put on half a stone around your middle. Oh, and your skin most definitely hasn't taken on a grey tinge from lack of sleep. Have a good bonk."

Kittens at least you still have a sense of humour! None of us have a private sex life these days! Reassuring that the cramping is not as bad today - maybe its implantation pains?

I'm actually 11dpo today, although not an exact science. Did trigger shot on Tues 19th, told to SWI Tue/Wed/Thu and start Pred Thur 21st. Lots of cramping yesterday. A bit today but not as bad as yesterday yet. No AF so far.

I couldn't help but laugh. When I went for my follicle tracking scan I asked Louise to write down the days that I was supposed to do all of the above so I wouldn't make a mistake and she duly wrote it on a compliment slip for me, so it read;

Trigger Shot - Tues
Intercourse - Wed/Thurs "With Compliments"

Snoopy lovely to hear from you and glad that the lump is getting smaller. Sounds like fluffy Snoopy is keeping you busy!
I do think the hydroxy has got me this far in the pregnancy so fingers crossed it will keep doing its magic!

Kittens are you 10dpo today? If so some of the ladies on here have not got a BFP until 12DPO so you might not be out of the running yet this month. I was also told by Louise that it didn't matter if you stopped taking the preds at 10dpo and then got a later BFP as I only ever took them for 10 days rather than 14 so I wouldnt worry too much. Dont forget I had absolutely no symptoms with this BFP and was so convinced that I was not pregnant that I went out and got really drunk! I really dont think symptom spotting works.

Free dont worry about the extra weight you have gained as it will soon come off - especially if you can breastfeed. I am appalled at how much weight I have put on in the last few weeks but eating is the only thing that stops the awful nausea. I wont go on the scales at home as I know I will be shocked! It doesnt help that I stopped all exercise with this pregnancy so have gone from circuits and aerobics 4 times a week to laying on the sofa! If you did go into labour before your scheduled date they would class it as an emergency c-section so all would be OK!

Delta are you with Mr S? If so I have a scan at Newlife this friday so might see you there?

Bertha I had quite a few niggling pains on my left hand side at around the stage you are at but I think its where the embryo is embedding further in ar stretching ligaments so try not to worry!

Greenolives yes I am on 40mg of preds so they tell you to taper off 5mg every 4 days from 9 weeks. I guess its so that by the time we all get to 12 weeks we will be steroid free. They have a cumulative effect so the higher dose will still be in my system anyway. I dont think the hydroxy makes a difference to the tapering down as I will still be on that for a while yet.

p.s. You shouldn't take it at night as it causes insomnia in some people in the higher doses; presumably that particularly applies if you're one of those people who feel hyper on pred.

I've been taking 120mg for a few months now. It's one of those things where there's no set dose and you can get tablets ranging from 30mg to 200mg, and the higher the dose, the more expensive it is. I get mine from Healthspan because most of their stuff is vegetarian. There was a 2009 study showing improved egg quality (Fertility and Sterility, Volume 93, Issue 1 , Pages 272-275, 1 January 2010) using 600mg but I can't afford that!

Thanks brownstag. What is the required dose of Coenzyme Q10? I know there is some in the Pregnacare but as I've been taking that for over a year and it's made no difference I suppose it wouldn't hurt to get some extra.

Havingkittens, Louise told me before that even if you stop taking the pred 10dpo, and you later get a BFP, it won't matter as the pred stays in the system for a couple of days, so I'd stop it if it makes you feel bad. I would try the coenzyme q10 too; it's been known to help with male fertility for years and in mice it delays the menopause. I think it somehow gives the egg more energy, which is what it does within cells generally. I used to have very short luteal phases (the shortest was 8 days), but all have been 11-14 lately. Also I seem to do better on the medicated cycles; they've all been 13 or 14.
I know what you mean about feeling you'll never be in their shoes. Just wish someone could tell us if all this effort and anxiety and expense is going to be worth it.
Ari and Carebear, just sent off my sample to Athens. Just ordinary post, no one asked what it was.

Well, it's pretty much always 10 days. Even when I had a super long cycle the other month it was because I ov'd on CD24 and then my AF came 10 days later like clockwork. I've been using cyclogest every cycle since I started SO and it's made no difference. I've also experienced implantation cramping a good few times before and it was quite a distinctive burrowing feeling, whereas what I had yesterday just felt like your standard AF type cramps. Did another internet cheapie test this morning and it was negative. Not sure whether to take my pred today or not now as Louise advised testing on CD10 to see if I can stop taking it as it makes me feel so shitty.

In the last 48 hours two people on my Facebook have announced pregnancies or posted up a bump photo. Both quite late on, both having had long hard struggles to get there so I am, obviously, delighted for them. But it's feeling less and less likely that I will be in their shoes.

having kittens, 'bollocks' was my exact phrase this month too. But is your luteal phase always 10 ten days? Mr S gave a friend of mine progesterone to lengthen hers. (Also mine has been longer since taking Coenzyme q10.)
If it's not always 10 days there's still plenty of time for implantation. The cramping might be implantation. It's not over until the fat lady sings!

AF due tomorrow, and it feels that way too. Lots of cramping and lower back pain today. Did an internet cheapie HPT this morning and no trace of a line. Bollocks! 2 eggs, post hysteroscopy, superstitious "woooo" etc and still nothing

So great to hear from you Snoopy, and good to hear the chemo is working and manageable, and also that your new family member and namesake is keeping you smiling.

Well, I have no idea yet about hysteroscopy magic. I am 9dpo and don't feel in the slightest bit pregnant apart from tiredness which could be down to anything really. I am supposed to test at 10dpo but may wait until Monday morning. Not holding my breath though. I've given up on symptom spotting as there's always something that could point to pregnancy but I've been proven wrong month after month for the last year and a half almost so we'll just have to see what's in store, or not.