TTC/Pregnancy on Prednisolone or similar part 5

Thank you for the warm welcome ... and thank you for saying I can stick around

I will need to get to know people a little before I can do proficient personals but I need to also thank you for telling me about your cyclogest dose. It gave me enough confidence to ring up and beg my GP to prescribe the 400 mg kind again, which she did. I had no idea that progesterone was an immune modulator, off to google with interest

I've not had proper investigation for NK cells - all the usual NHS testing, and some extra tests that we managed to get on the NHS too. If when this pregnancy ends in miscarriage we will go the whole hog and test everything there is to test: was planning to do this when I became pregnant this time.

Currently trying to control the mentalling / confine it to non-work hours, but hard to do. We've had a few scans so far but the next NHS one isn't for two weeks so I'm trying to work out whether I can make myself wait or whether I need to try and book a private one for my own sanity . I have a doppler at home but it is too early to try to use it yet.

I'm looking forward to getting to know you x x x

Can anyone update me on list please as on iPhone. I'm actually 38+3 now. Thanks xx

Hi mercator I've been very fortunate and have actually been finished work since 23rd dec but worked in DHs business until end of jan also as been stupidly busy so I have still had a bit of time to get into the "nesting" I'm really getting sick of my own excitement now tho !!. Good luck with the scan next week, everything crossed xx

Updating my details:

Tues 28th Feb

BFP -3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2, DC#1 38+1 Induction booked 09/03/12
Digitalgirl - High NKC - BFP cycle#2, DC#2 33+1 Due 16/04/12 AN appt 6/03/12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 30+1
Comedy - V High NKC - BFP cycle#2, DC#2 ? 27.4 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 26+6 Next scan March

2nd Trimester
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st cycle. DC#1 19+0 Anomaly scan 16th March
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 18+6 Next Scan 6/03/12
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 15+5 next scan at 16 weeks.
coleyoz - V High NKC. DC#2, BFP cycle2, 15+2, Nuchal scan TBC

1st Trimester
Mercator - V High NKC, TTC#2. 10+4, next scan at 12 weeks 8/3/12
Hopefulfor2nd - High NKC - TTC#2. Next scan TBC - 9+5
dunnit - V High NKC - TTC#1, on Pred, IVIG, prog and Clexane. 9+5
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 5+1

TTC -Waiting to test
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
BellyD - V High NKC - TTC#?
Suemays - V High NKC, TTC #2. Superov cycle 2. (Pred & Hydroxychloroquine) Testing on 1st March
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 1 testing approx 7/3rd
eurochick - TTC#1 High NKC, superovulation cycle 3, pred cycle 3,
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc)

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
Willitbe - RMC, NKC not tested, TTC #4 cycle 1 (after miscarriage number 12) Fertility consultant prescribed pred.
buster76 -V High NKC, Factor V Leiden.
ChoccyPud - V High NKC - TTC#1 from March (Pred & Hydroxychloroquine)
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp

WTTC
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
duggs1976 - High/V High NKC - TTC #1 - due to start IVF
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2

Hi All and welcome to Zoe and Frozen

Also whispering congrats to Frozen.

Also congrats to Iggi on reaching the 3rd trimester - wow what a milestone!

Pebbles you made me chuckle with the runaway scooter! Great image it created. Hoper you're not too bruised.

Ari so sorry this isn't the month - I do so hope you get lucky soon - glad your speaking to Mr S.

Stogan can't believe you have not long to go - when are you going on ml. Digi I can't imagine getting the baby clothes out of the loft! We're spilling over with 'stuff' and will be pleased to thin out to be honest we have so much in store. Did the same with my maternity clothes, but already had to pull out my jeans and work trousers - just prednisolone bloating.

My scan last week went well which was a relief but understand the mentalling PQ as every scan is a panicky experience. Now have another one scheduled for next week - 12 week anomaly which I pray is going to be ok.

I am also on 400mg Progesterone, but interesting that is is also thought to be immune suppressing and interesting article about the Intralipids I really had no idea it had such an impact. Now I am coming off the Steroids I'm finding I am not quite as hungry which is a relief and although desperate to come off them I still have a little wobble about the impact of this but just have to trust in the treatment and all you ladies ahead of me.

Good luck to those TTC this week!!!

Welcome to the new posters.

free I'm diagnosed with high NK cells but on the 400 dose of Cyclogest. I didn't know it was an immune modulator. Interesting.

BTW, I have tried to move to Greenwich twice now - once I ended up just over the river on the Isle of Dogs. The second time I ended up in Brockley. I just couldn't find what I wanted at the right price in Greenwich. Not near to the centre anyway. And if you are going to have to take a bus to those cafes and pubs I felt it kind of defeated the object of paying through the nose to have a Greenwich address.

Ari sorry for the BFN.

It's really encouraging to see more and more of us reaching the second and third trimester!

Missed ur post ari so sorry, feel like a real idiot now for my speech outburst but it applies to u too Hunni, keep the faith we will all get there, massive hugs Hunni xx

Aaaarrrggghhh iggi another 3rd tri lady, this is immense !!! Come on ladies we can all do this do not give up hope (easy for me to say) but this is going to happen for us all, the treatment is working just look at the list !!! (gonna go now before I start the whole I had a dream speech) dont give up the faith ladies xxxxxxxxxx

Thanks free. Yep snoopy, writing an email to Louise right now. Bit hard to keep asking and asking, Mr S still seems to think my eggs aren't an issue and I clearly do. I know he is the expert and not me, but I would just like to take any opportunity to give those eggs a boost. I'll ask the question, and expect to be told to just be patient!

don't understand really when he didn't hesitate with me. I would ask again! I think I read we all produce one egg a month on average without intervention so surely having two/three is going to up our chances alot? You could speak with her just to sound her out you may get some info out of her. She can only say she can't discuss it if she can't in which case make an appointment.

Sorry about the BFN Ari - crossed posts with you and Snoopy. Am guessing the extra Cyclogest is connected to what he said to me about it being an immune modulator too. Gotta run xx

Thanks snoopy - oh yes indeed I'd do SuperOV, I raised it with Mr S at my appt in Jan, but he was adamant it wasn't worth doing for me, he seemed quite sure I didn't need it. I was all for chucking anything and everything at this (anything that boosts my eggs is fabulous, I'm quite happy to take the risk of twins or whatever!), but he was quite definite I wouldn't be doing SuperOV, so I didn't feel I should question it further. shrug Perhaps I should email Louise and ask again, although I think someone else on here said that Louise can't discuss changing treatments, I'd have to go see Mr S again? I just don't know.

Ok, quickly before getting on with my busy day... Have moved Iggi to the 3rd trimester! Congratulations Iggi :) Also I can't believe Stogan is 38 weeks. Aggh! And Digi and Coconut* close behind. I have also tried to add a bit more info on there, so if you want to add anything without having to work out adding days to the BFPs do so now.

Tues 28th Feb

BFP -3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2, DC#1 38+1 Induction booked 09/03/12
Digitalgirl - High NKC - BFP cycle#2, DC#2 33+1 Due 16/04/12 AN appt 6/03/12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 30+1
Comedy - V High NKC - BFP cycle#2, DC#2 ? 27.4 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 26+6 Next scan March

2nd Trimester
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st cycle. DC#1 19+0 Anomaly scan 16th March
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 18+6 Next Scan 6/03/12
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 15+5 next scan at 16 weeks.
coleyoz - V High NKC. DC#2, BFP cycle2, 15+2, Nuchal scan TBC

1st Trimester
Mercator - V High NKC, TTC#2. 10+4, next scan 23/2/12 ?
Hopefulfor2nd - High NKC - TTC#2. Next scan TBC - 9+5
dunnit - V High NKC - TTC#1, on Pred, IVIG, prog and Clexane. 9+5
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 5+1

TTC -Waiting to test
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
BellyD - V High NKC - TTC#?
Suemays - V High NKC, TTC #2. Superov cycle 2. (Pred & Hydroxychloroquine) Testing on 1st March
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 1 testing approx 7/3rd
eurochick - TTC#1 High NKC, superovulation cycle 3, pred cycle 3,
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc)

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
Willitbe - RMC, NKC not tested, TTC #4 cycle 1 (after miscarriage number 12) Fertility consultant prescribed pred.
buster76 -V High NKC, Factor V Leiden.
ChoccyPud - V High NKC - TTC#1 from March (Pred & Hydroxychloroquine)
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp

WTTC
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
duggs1976 - High/V High NKC - TTC #1 - due to start IVF
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2

Oh crossed posts with people all over the place, that's what comes of being at work and taking a phone call while posting! Meant to say a big welcome to Zoe too (if I didn't yesterday? brain is still fried).

Just on the cyclogest ... I was on 400mg once a day up until this last miscarriage, then at my review appt with Mr S at the start of Jan he said with my next pregnancy (if this ever happens!) I should up this to 2 x 400mg, not sure why? Louise said they could be taken (that's not the right word, but you know what I mean) at the same time, doesn't have to be 12 hours apart or anything.

/waves to everyone

Oh ari sorry hun that's a real shame. I so wanted you to get a bfp this month. It's early still but you know your own body, especially when you are so tuned in to what's happening each month and I spose you get your hopes up when you psycologically have in your head that it usually happens once every two months. I know you said before about Dr S saying you didn't need Super Ov. but I don't either I think as seem to ovulate ok each month but I'm just doing it to time things exactly and boost eggs a bit so I have more of a chance. Would you not consider that at some point? He didn't seem to hesitate in putting me on it.

Sorry, crossed posts PQ. No wonder you are mentalling. And it will carry on you know, the pregnancy and the mentalling that is! How many weeks will you be at the scans? Late enough to hopefully see a heartbeat am assuming. There's nothing you can do really as you know, you are just going to have to live through it. Oh I can sooooo relate to it all. The first 12 weeks in this pregnancy felt equivalent to an entire Elephant gestation period. Once I got to 12 weeks it felt like that should be it, but then I realised that (hopefully) there was a whole load more to come.

That sounds like a great thing to do re the cord and stem cells, I will look into it. I wonder if our cord and placenta etc will be a bit ropier than anyone else's given the NK cells and treatment...?

I am heading in your direction in a minute but I gather you are at work? Maybe tonight might be a good idea to come round and pick things up - I am at pilates until 7.30 so DH and I could come round after that. Don't worry - you won't have to entertain us as I know you will be tired after work etc.

Morning all, and a big welcome to Frozen.

Thanks for asking snoopy but I'm afraid it was exactly as I suspected this morning, a BFR (big fat raspberry), and just to add insult to injury, pre-AF red spotting, bang on time. I always get this on CD12 (assuming I'm not pg), spotting again on CD13 and then full AF on CD14. I suppose I should be reassured that my cycles are properly "in sync", but in reality of course I'm gutted, even though I honestly knew this wasn't my month. Almost the worst bit for me is that since my first MC back in Dec 2010 I've then gone on to get pg every second cycle of trying; this was my second cycle of trying since the MC Dec last year but this time no pregnancy. I know two months is nothing in the grand scheme of things, but it just makes me feel even more it's never going to happen. Yes, I know, whinging never did any of us good, but I'm feeling a bit sorry for myself this morning. Quick virtual slap with a wet fish required, I think.

So ... over to the rest of you lovely Waiting To Test ladies and fc for sue and bellyd testing tomorrow.

lemon I am on thyroxine, yes - and my GP also is prescribing this (and the folic acid for the MTHFR, although as previously mentioned I'm not taking that, I'm taking methylated folate due to my being homozygous), and she told me once you're being prescribed thyroxine for an underactive thryoid (whether subclinical or not) then you are entitled to free prescriptions. She actually filled the form in for me there and then - great to hear you have such a proactive chemist, wish there were more of them around!

Hi all, yes we are all indeed a proactive, researching bunch :)

Hope the scan goes ok tomorrow Pico and it is all clear. Intralipids are £350 a time I think and most of us have had one a month for three months from a BFP, so £1050 all together over three months to get together. Am pretty sure he will prescribe them if he feels you need them. But don't worry if not as everyone's treatment seems to be different, as Lemon says above with her 2nd trimester intralipids and myself and others now on Hydroxy.

Lemon I've been on thyroxine for 16 years and whilst it isn't a magic weight loss pill it does help revive your energy levels a bit if you have been underactive. If your TSH has been around 4 it is great that you have found a doc like Mr S who will put you on thyroxine for that as it took me two years to get a diagnosis when I was younger and I am pretty sure my TSH would have been higher. The NHS often sees anything over 5 as only just treatable and when my TSH veered back to 3.85 last year I felt like I was walking through treacle! So you might find that you start to feel a bit more energised, if you have been feeling tired etc. Have you looked up other thyroid symptoms to see if you have them?

Incidentally, for other thyroid folk, did I mention that my midwife called me up and said my TSH was low therefore I needed more thyroxine?! Good job I know that's not the case!

Hi Frozen and welcome to the thread! I was on 400mg of Cyclogest too - from BFP until 16 weeks (am now 19 weeks). And unlike Coconut my official protocol (I just opened it up to check) says 400 too. Maybe it is those of us with very high nk cells that are on 400 and those with a lesser count on 200? Not sure - we should maybe add our dosage to the list so we can check. It was just in one pessary, for which I used the front option and inserted when I got into bed. A whispered congratulations on getting to ten weeks! Don't worry, you are in good company here so stay around and feel free to freak out about every symptom/non symptom as we have all been there/are hoping to be there.

BTW Mr S told me that Cyclogest is prescribed not just to counteract any progesterone shortage but also as it is an immune modulator. Am enjoying my liberal use of bold for emphasis :)

Hello again Zoe - good luck with the appointment today. I haven;t been on super ov but I do think this is only something that is available at the private clinic not NHS. I think this is because his NHS clinic is about recurrent miscarriage and not fertility. If you are seeing him today does that mean you are at the New Life Clinic?

Charlie I have been asked by St Mary's to keep a section of the cord. They have given me a little box for it and everything! Must remember that in the mayhem... I do like Dulwich etc too but we are looking in Greenwich. At the moment I live in Charlton (a nice part of it admittedly) but it is just too residential round here. I need to be able to step out of the house and find nice coffee bars/pubs etc within a few mins walk and here I have to go into Greenwich or Blackheath. Both of those are very expensive at the moment though. We can afford some of the cutesy houses in the centre of Greenwich (something I always thought I wanted) but in reality they are all tiny little two bed cottages. Anything bigger than 2 beds is well over £450k. So I think we might have to look a bit outside our preferred area or find somewhere that has a down side - such as ex-local authority or in a less desirable road that is NEAR a lot nicer ones. This place is only for about two years though until we work out our next step.

Digi that is such a lovely step - getting the baby clothes out and packing the bag! Gosh it is all feeling like it is going quite quickly now.

Right, I am off for another viewing and to meet my friend in town for lunch and then really must get some work done before Pilates later. I seem to have turned into a lady wot lunches

I have now got dates for both anomaly scan and an appointment 'with Mr S' team' at Epsom General on the 16th March. I will be 21.4 on that date but I think I will have to cancel and book FMC due to DH not being able to make it. Need to sit down with him and diaries tonight.

Hope everyone is ok today! xx

hi and welcome frozen and zoeella

Big wave to everyone else (digi glad your DS got on some antibs - is he coming right now?).

snoopy going back to your q about intralipids - they went fine thanks. nice and relaxing! duggs - I just called up once I got BFP. No side effects as far as I can see (other than hole in wallet) so i think for peace of mind they are great; even if it is a great big placebo effect, I am happy for anything at the moment. pico they are about £350 off the top of my head. the first time you need to pay extra for a liver function test too (manufacturer's requirement). The IV took nearly three hours so do factor that into your time planning!

cheerful I'm a huge fan of cord blood storage (with a view to stem cell research and donation) , largely because I used to volunteer with kids with cancer and my dad passed away last year of leukaemia (and my MIL has it too). We were lined up to store DS's cord blood with a private company but because he arrived early and in an emergency (blah blah) we couldn't get the nurse there in time. Some NHS hospitals are collecting cord blood now but still not very many. Kings is one of them.

yes, any news ari? And has bellyd cracked and tested early?

i am tormenting myself playing the what if game with dates, twinges, pregnancy symptoms, mc symptoms. it is hideous. First scan is next Thursday (with EPU, Mr S the following week). Not sure if I can make it - well, obviously I will make it, the world will keep turning, but I am beside myself. DS keeps on asking me "is mummy happy?" as I am obviously projecting some pretty stressed out vibes. Guess I had better get back to work to try and take my mind off things!

How is ari this morning?.........fc..x

cheerful how interesting re stem cells storage , where did you get it from?

got my scan tomm after mc, hope everything clear and i can put this behind me , worried i will get stuck with doing d & c as well but if that happens so be it, i just want to move on now.

how much are the intralipids? i know its not avaliable on nhs, im wondering if they are going to put me on this next time since my my nk levels are V high, still dont know why they didnt the first time, better start saving !

hi frozen and zoe. I can not answer the question about LIT.

I think you are right about the selection bias. I think it is because we are all determined to find and answer and not give up. That is why we find our way to Mr S. I also think that is why most of us on this board will be holding a baby in our arms in the future. I can not remember which of you ladies said it about a midwife saying it is those that don't give up that end up with a baby.

pebbles was a bit shocked she did not even seem sorry for running you over. Did sound like something from a comedy sketch. I hope you are not too bruised.

stogan and digi it must all seem so real for you now. I can not even imagine what it must be like to be packing a hospital bag.

Twin Ari he did not say it was subclinical, but I think that is what he meant. Can not recall the numbers exactly but I think mine was 4.something and he said he tends to have success when it is lower. So I have been started on thyroxine and that has brought my TSH down. The only problem is the local chemist can not get his head around the fact I am paying for my prescriptions. Have been chased round the local boots with him telling me I should apply for an exception certificate and him tutting at my GP for not mentioning it and then he was going to telephone my GP and tell her off!!! I have to say it did make me feel glad to know that some chemists are doing their best to look out for us. My GP agreed to prescribe the Folic acid and thyroxine so I think I am luckier than some about the GP converting prescriptions. In regards to the different regime I think it is because I have had second trimester miscarriages that they are giving the intralipids in the second trimester. He did not say that was the reason but I am guessing. So I think that is why he has given me a different treatment to you, although on paper we are "twins" it is our history that is different. Does that help? The only plus point is I am hoping the thyroxine will mean I do not suffer the pred weight gain. In my head the thyroxine is going to magically make me lose weight and then that will even out any pred weight gain! Ari are you on clexane or thyroxine?

choccy glad to see you on the rollarcoster again.

waves to free and coconut and everyone else who I have missed off

Frozen, I was on 200mg up to 16 weeks as well. This, I think, is the standard dose that Mr S puts his patients on. As far as I can remember, he doesn't actually test for progesterone levels. Were you ever tested? I'm just wondering whether the original does was 400 for a particular reason. I can imagine you're feeling really wobbly if you're not having specific treatment this time around. Feel free to stay here for a bit of support and hand-holding. We all understand!

Digi - Those kitchens look lovely! Yours is really nice. How do you find having a kitchen on legs rather than with boards around the bottom? Do find the units get messy underneath or is it OK? I'm spending a lot of time dreaming about my ideal kitchen in the absence of a real one at the moment.

I don't think I said welcome to Zoe. Sorry and welcome!

Who is testing today? I've got a bit confused.

Your right frozen no talk out of bounds on here! Feel free to join in to hand hold not everyone is on pred including cheerful below your post there and she's a success story. Congrats on gettin to 10 weeks! x

cheerful that be used for treating illnesses in a child too (god forbid) can't it? Is it expensive?

Pico - that stem cell thing is very interesting. I think stem cell technology will boom in the next few years and am definitely going to get the baby's cord blood and tissue stored. In fact the kit just arrived today!

Imagine if you found you had run out of eggs / they had all gone bad but you can whip out your stem cells and have a few more eggs grown. Incredible!

Is anyone else planning to store the cord blood / tissue?