TTC/Pregnancy on Prednisolone or similar part 5

[suemays]

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 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

digi you have such a way with words ...oversized bollocks...my national fruit and all! Baby must be loving all the yummy foood...

I'll call for the results this evening (though I may not get through if experience serves)

PQ So far I have been fortunate with my NHS care, my GP is good as have been EPAU and St Helier in general, EPAU organised the blood tests needed without any questions, I miscarried on a Tuesday, took my referral note to my GP that day by the time I got back from my ERPC on the Staturday I had my RMC appointment. I'm just finding now that no one is very clear, ie Shehata's team about answering my questions where I need to go to get the answers or treatment and I object to having to make an appointment to get him to answer a couple of questions that his team should do. This is already a very distressing time and I'm at the point of giving up.

I'm so sorry lisa that sounds really upsetting and frustrating and I don't know what more to suggest. (other than don't give up).

At the risk of stating the obvious I suppose you've talked to /tried to talk to Louise (or whover else you're dealing with), stating exactly what you need to know and then asking her to call you back and spelling out that you're not happy with making an appt to get the basic info?

spoke to Louise and got no where !!

Just updating myself on the list as waiting to test now!

Tues 21st Feb

BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 37+3 Due 10/03/12
Digitalgirl - High NKC - BFP cycle#2 32+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 29+1
Comedy - V High NKC - BFP cycle#2 ? 26+4 C section booked: 14/5/12

2nd Trimester
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 26+2 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 25.4
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 18+0 Next scan TBC (20 weeks at Epsom General)
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 17+6 Next Scan 6/03/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 14+5 next scan at 16 weeks.
coleyoz - V High NKC. TTC #2, BFP cycle2, 14+2, Nuchal scan TBC

1st Trimester
Hopefulfor2nd - High NKC - TTC#2. Next scan TBC add dates for Hopeful
Mercator - High NKC, 7+4, next scan 15/2/12
dunnit - V High NKC, on Pred, IVIG, prog and Clexane. 8+5 next scan?
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 4.0

TTC
Waiting to test
buster76 -V High NKC, Factor V Leiden.
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
BellyD - V High NKC - TTC#?
Suemays - V High NKC, TTC #2. Superov cycle 2. Testing on 1st March

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
lisacn - high NKC TTC#1
Snoopygirl - V High NKC TTC, cycle 4, Super Ov Cycle 1 testing approx 9/3
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
Pebbles - High NKC, PCOS - TTC#1 super ov cycle 1 (post IVF - 1 chemical, 1 mc)
eurochick - High NKC, superovulation cycle 3, pred cycle 3,

WTTC
ScooterChaser - V High NKC - TTC#2 -awaiting follow up appointment
ChoccyPud - V High NKC - TTC#1 from March
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
picolina - V High NKC
duggs1976 - High/V High NKC - TTC #1 - due to start IVF
Willitbe - High NKC TTC #? Steroid prescription from GP

Snoopy I took DH in to my 'mixing bowl' scan. I was behind the curtain on the bed and Dh was sitting on a chair on other side so couldnt see anything but could hear. Dr S and Louise were at the 'business end'!
I am not that sensible believe me!!! I also used to be a gym bunny and got fed up with everyone telling me that going 5-6 times a week was causing the miscarriages so did a bit of research on it. It didnt matter that I was doing this much plus running when I was carrying my DD in the early stages as I didnt know I was pregnant. I calmed it down at 8 weeks when I realised! I get so fed up with wellwishers giving me their ideas on why I have had miscarriages!

lisa not meaning to make light of this but...can we help with your questions? We are really medical experts

You'd think the over-sized bollocks thing would put one off the kiwis, but no. I had two huge slices of peanut butter with bonne maman strawberry jam, so that's worse. I practically put the whole jar on. Ah, there will be plenty of time for losing it all afterwards Digi. Just think of the power of breastfeeding.

Sorry you have having a nightmare Lisa have you worked out what the next step is? What are the questions you want to ask - you never know we all might be able to have a go at answering them, being that we have a lot of collective knowledge here now.

PQ glad the team at St T's were receptive about what you have been through in terms of treatment. Yes it is weird trying not to always react with 'IF I stay pregnant' when we talk about these things to the professionals. I think I have got to the stage when I can mentally say it on the quiet to myself and just nod and agree with the person I am talking to :)

Am so glad i am going to be going to Epsom (although I might not say that when giving birth somewhere on the motorway on the 1 1/2 hour drive there...) and seeing Mr S' team. It makes all the difference to me that people know what am talking about with NK cells etc. Just trying to arrange how I can actually get to see him a few times too.

I've just done a whole load of online research today about weight training and pregnancy and it seems there are still plenty of things I can do - mainly involving light weights and not lying on front or back or doing anything too heavy or holding breath. I am making a list and am determined to start doing a bit of exercise again now. Just to stay fit and healthy. Off to pilates now - wish me luck amongst all those pregnant women!

Mr S told me that after 8 weeks you're in the 'big league' of scans - ie external rather than internal. So it will be interesting to see how Hopeful's pans out tomorrow. Snoopy DH is often in with me when I have a scan - ie if he has come to the appointment he will be there next to me when having the dildo cam or whatever. Neither of us are bothered by it and the docs have seen it all before. It's not like he will be staring at your bits - more interested in the screen :)

Stogan good luck with the weigh in! And good luck for all scannees this week.

Digi, loving the kiwi comment! Also hiccuping babe.

It's ok ladies! Managed to get an emergency foo foo wax whilst dd was in her ballet lesson! So, am good and presentable!

Also, a confession. Not only have I eaten mini eggs today, I have half eaten a mini egg Easter egg!!

Ha Ha hopeful Lucky old Dr -get us sprucing up for him!! I wonder whether our OH's get this special tidy up treatment! (round here only when the light levels go up in the summer, )

Free I know you are not meant to raise your arms above your head at so many weeks as it increases the heart rate too quickly which is bad for the baby. You can lay on your back so long as your head is higher than your heart so you can use a step bench on an incline. Dont lay flat on your back as it can limit the blood supply to the baby. You should also start using a yoga cushion under your bump if you are laying on your side to support it. I had a brilliant trainer when preg 4 years ago and it really helped me get back into shape afterwards whilst still exercising up to 36 weeks. Shame the pred has undone all the good work! I have got some dvds/books hidden away somewhere that have training programmes customised to your level of fitness and how many week preg so I will dig them out and let you know the title. I got them on Amazon so were cheap.
Be careful doing any sit ups as your muscles will be dividing. If you start working on them they might not knit back together afterwards. You are best off doing pelvic tilts on all fours. Be careful in pilates too as they should be prenatal qualified as some of the exercises can be dangerous for a preg woman due to your centre of gravity changing. You cant go wrong with swimming and walking or using a cross trainer. Have you got a gym ball as you can do pelvic tilts whilst sitting on that too plus simple leg lifts. Its good practice to sit on it now and move your hips from side to side (Shakira sylee) as it loosens the lower back and strengthens it - I used one in labour and it really helped! Sorry for the long post and if I am teaching you to suck eggs!

Just updating my details

Tues 21st Feb

BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 37+3 Due 10/03/12
Digitalgirl - High NKC - BFP cycle#2 32+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 29+1
Comedy - V High NKC - BFP cycle#2 ? 26+4 C section booked: 14/5/12

2nd Trimester
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 26+2 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 25.4
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 18+0 Next scan TBC (20 weeks at Epsom General)
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 17+6 Next Scan 6/03/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 14+5 next scan at 16 weeks.
coleyoz - V High NKC. TTC #2, BFP cycle2, 14+2, Nuchal scan TBC

1st Trimester
Hopefulfor2nd - High NKC - TTC#2. Next scan TBC add dates for Hopeful
Mercator - V High NKC, TTC#2. 9+4, next scan 23/2/12
dunnit - V High NKC, on Pred, IVIG, prog and Clexane. 8+5 next scan?
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 4.0

TTC
Waiting to test
buster76 -V High NKC, Factor V Leiden.
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
BellyD - V High NKC - TTC#?
Suemays - V High NKC, TTC #2. Superov cycle 2. Testing on 1st March

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
lisacn - high NKC TTC#1
Snoopygirl - V High NKC TTC, cycle 4, Super Ov Cycle 1 testing approx 9/3
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
Pebbles - High NKC, PCOS - TTC#1 super ov cycle 1 (post IVF - 1 chemical, 1 mc)
eurochick - High NKC, superovulation cycle 3, pred cycle 3,

WTTC
ScooterChaser - V High NKC - TTC#2 -awaiting follow up appointment
ChoccyPud - V High NKC - TTC#1 from March
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
picolina - V High NKC
duggs1976 - High/V High NKC - TTC #1 - due to start IVF
Willitbe - High NKC TTC #? Steroid prescription from GP

Forgot to also say be careful not to overstretch as the relaxin hormone in your body will make you really supple but you can damage the ligaments!
If you really want to watch your temperature you can buy a heart rate monitor and wear it when you work out - it beeps if you go to high so you can slow down. I used one doing low impact aerobics and it was great as you tend to forget to take it slow when preg esp in the 2nd trimester when you dont feel that pregnant! I was told that it can be dangerous for the baby if you get too hot when exercising so its something to take care with.

Sue had to comment on the mixing bowl as I had something similar with my dh. He thought it was a very strange/long ultrasound and only realised what was had happened when we got home after the scan

Pico hopefully you're over the worst!

I've also had massive weight gain with the steroids, permanently hungry and have put on 8 kgs from my normal weight - already in 'fat' jeans! Just hope it evens out over time as look like I'm 3-4 months from bloat!

free yoga is mean't to be very good in pregnancy. I definately used it post pregnancy which I did with my lo and it certainly helped snap me back in shape fairly quickly.

Good luck to all those having scans, sorry to have missed the Amersham meet up as I'm not that far away.

All I want to know is who can prescribe me the medication for short LP's any info on taking it, when to take it etc

Just to weigh in (!) to the exercise/weight conversation, I'm now over 14st at 5'10". I'm never the slenderest person, but I'm at least a stone heavier than a year ago when I got pg for the first time last year. Three mc's, not much/consistent exercise and a load of Pred over the year has left me a fecking massive belly with nothing to show for it. At least my boobs are rather generous, so they still enter a room before the belly and help camouflage it!!! :)

Hopefully the ongoing lack of appetite with Hydroxy might balance things out a bit. And I reckon it'll come off easily enough during or after pg with breastfeeding (how's that for optimism?!) so for now feck it!

free are you staying with Mr S privately in conjunction with normal nhs mws etc at Epsom or have you got him as your nhs consultant? Interested as Epsom is my local too... If I ever need to organise these things.

PQ you're v organised, understandably so, but great news you've got it all sorted at St Ts. You've also reminded me to get dh to check if my cover is refreshed every time I mc, ie can we recover eg hcg tests to confirm chem, cost of consultation and scan that confirmed Dec's mc? It'll all go straight into the acu/intralipids / Mr S holiday fund but hey, better we have the money than Bupa get to avoid covering me. Do you know if they tend to have a time limit for seeking reimbursement?

It has been nice to have good news on here recently, long may it continue and those pg lists get longer. Stogan you said was it ok to keep posting on here YES please do, it gives us hope that we can get there too!!

Waves to all. :)

Free and any other ladies who are interested. The exercise in pregnancy books that were recommended to me by my trainer are called 'Pilates Workbook for Pregnancy'
www.amazon.co.uk/Pilates-Workbook-Pregnancy-Michael-King/dp/1569753105

The other one is 'Pregnancy and fitness' and has workouts for each trimester for people who have never exercised up to gym bunnies.
www.amazon.co.uk/gp/product/0713669160/ref=oh_o02_s00_i00_details.

I have also put on almost a stone and a half over the last year - I am 5ft 4 and weigh around 11 and a half stone. It makes you feel even worse when you have nothing to show for it!

Choccy you made me laugh about your boobs - I am the same as at least clothes hang off of them so I can hide the jelly belly! Thanks for reminding me about Bupa as I need to fill the forms in - not that I will be covered for miscarriages seeing as I will have to tell them.

Mercator you will have to come to the next meetup as I am sure it won't be to soon.

Lisa its strange as I have found Louise to be really helpful. On my last chemical she talked to me for ages about it. She has said however that if I want to discuss treatment plans I have to make an appointment to see Dr S. I think she is there more for the support and advice on miscarriages and how to take drugs etc once you are on a plan but can't help on making or adjusting a new plan as Dr S does that. I agree with you that it's annoying you have to make an appointment to do this but that's how they make their money!

suemays it was Louise who first mentioned this medication and advised me to make an appointment which I did, I walked away no less than when I went in, it was a total disaster, I'm seeing them on the NHS at St Helier

Lisa how short are your LPs? I asked Dr S about this and he said I probably had my ovulation day wrong. I think they can prescribe you progesterone from ovulation until BFP/AF. He suggested the Super Ovulation plan to help me pinpoint ovulation and I have read that it is supposed to help a luteal phase defect. I think anything less than 12 days is cause for concern. Maybe you should book an appointment to discuss going on this plan? I can't remember if you are NHS or private but one of the other ladies said that they don't offer superov on the NHS.

I also 'spruce myself up' when I see Dr S - dont want him wading through forests to get to the right place! I do hope he doesn't read this thread!

Sorry Lisa looks like we crossed posts - that explains everything if its NHS. One of the other ladies, Scooterchaser has waited ages for a follow-up appointment on the NHS at St Helier after her last miscarriage so feels just like you. She couldnt even get to speak to Louise as was given the impression she was there just for private patients. Can you afford to see him privately?

I am paying through my NI payments each month, nothing is for free. I can get an appointment within 2 weeks on the NHS I just can't get answers to my questions from his staff, I can talk to Louise but I still get no where, I get the feeling that I'm a second class citizen as I don't pay to see him privately

It's lucky to get to see someone like him on the NHS. Is only possible for people living in his catchment area. Everyone else has to pay privately. I tend to be quite impressed when consultants keep both going when they could blatantly earn a heap more if they spent all their time practicing privately. Best of luck to you!

I don't see Shehata I see a registrar through the RMC at St Helier who is following his protocol

It certainly must be frustrating Lisa. I think one of the issues might be that Mr S' NHS role under which you are seeing him is for recurrent miscarriage, not for super ovulation etc. Maybe it would be worth seeing your GP again to see if there is a similar programme available on the NHS? Or finding one yourself online (as unfortunately that's how we have probably all found our way here, rather than our GPs knowing anything about it!) to see if there is anyone out there who addresses LP issues on the NHS.

Duggs is right about seeing Mr S on the NHS too - he is just one consultant who deals with such a specialist area, it is hard to get to see him and not something that is us, unfortunate as it is, easily available. It's such an niche area of treatment.

Also (someone might correct me if I am wrong) but I thought Louise was the midwife that works for NLC and Mr Shehata's private practice. Annabella is the person to contact re his NHS practice? Try contacting Annabella.

Good luck with it! Like I said, maybe look for an ovulation/conception expert that is also available on the NHS.

Lisa- just popping in to say have you tried agnus cactus (sp?) . I have heard ladies on other threads try it for short lp. You can get it from health food shops. But talk to the herbalist first as it is quite powerful and should only be taken pre pregnancy x good luck x

free thanks for the advice but I think Annabella was the rude cow who let me leave in tears, I know if I want super ovulation I need to see a fertility specialist and that is not a great concern to me right now, my concern is my messed up cycles and the medication I can have to help that, I don't really care who I see as long as they help which I certainly don't feel is happening at all, I don't see the point in continuing if I am not going to get the support