TTC or pregnancy on prednisolone or similar part 9

[sarahs999]

Oh dear - we reached 1000 posts on thread 8 without noticing! I hope you can all find this. THis is 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!

Links to earlier threads:

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

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

bit of a waiting game free i have aprox 2months just over till we will make a start ttc again. Thank you for telling me your story i feel miles better! dp tells me off for being too negetive about things. the questions about future pregnancies come from him more than me (see he's much more positive!). The costs for us would be a big factor in things though. shame since we agree that we would love 2 or 3 kids. oh and thank god you said that about the alcohol i think i will need it to calm my stressing down hehe

It is expensive but you have to hope that it's for a relatively short period of time. I was lucky I had a very understanding GP who although she had not heard of the treatment agreed to convert all my presriptions to nhs ones which helped save a few quid.

oh relly thats good, i did wonder if that would be possible. i guess id still have to go to mr s for the intralipids though?
im so anxicous to get started! the wait is getting annoying now. i know ill be glad we did though so it wont have interfered with the wedding.

Evening all.
Progress today - went back for our NHS ivf follow up. They have agreed to give us tests for (excuse the spellings!) Factor V Leiden, antiphosphodid a syndrome (lupus) and karotyping. On top of my TSH test, 8 vials and a faint later....... Pleased that these tests are being checked off the list and paid for by NHS, but it really was a last minute decision by the consultant who called us back in after we had left the office as she then decided to offer the tests! I think she was surprised by me banging on about wanting to know why we can't get pregnant naturally and there must be a reason. Moral of the story - keep banging on!
Still aiming to see Dr G in a couple of weeks to discuss other tests and possibility of endo scratching before FET, and plans/second opinion for IVF #3 though may not fork out for the tests until after our FET (already seeing Dr S via NHS so Fet will be with immune meds too hopefully).
What a difference a week makes. Onwards and upwards ladies!

Oh, meeting on 27th sounds great if that's a general invite - I'd hate to be a gate crasher!
Emma / coopde
Xx

Just catching up; pq that's so awful, make sure you talk it through at every opportunity, you'll need to get it out of your system. Hope JONTY is ok now.

Sue, thinking of you.

Waves to everyone else - sorry no personals. An slightly staying away from Mumsnet ATM to keep me as calm and worry-free as poss. Got 20 week scan on Friday. Halfway! Had some scary leg swelling a couple of days ago and got v stressed that it was the PE returning, so am keeping an eye on it. Seems to be something to stress about at every stage!

Anyone fancy updating the list? It's been ages!

Just dropping in to say I've just found out you shouldn't take hydroxy within two hours (before or after) of any indigestion relief drugs. This includes omeprazole. I only found out as I went to a different pharmacy this time. I don't know if its a side effects issue or if one negates the effect of the other. Those who are on hydroxy as well as Pred and who therefore take omeprazole be aware!!

Sorry for lack of personals I'm not up to date on the thread so hope all is well :)

Omeprazole choccy? Wassat?

Hi ladies, it went as well as it could yesterday so I feel like I have said my final goodbyes. DH carried Scarlet from the limo in to the service which was heartbreaking but I am glad he did that. We both feel like we have done as much for her as we could. I don't think I have ever cried so much! Thanks for all your support on here, it really does help during the dark days.

Terrified about TTC incase I either miscarry or have to go through this again. Now that it is over, I am starting to think about what has happened and what I have been through. I think part of me has blocked out it out to deal with it.

PQ awful time for you after this whole journey - just goes to show I think we can never relax from the first BFP. Hope Jonty is OK now.

Cartoonface I will prob be trying around the same time as you.

Sarah good luck for Friday.

Sue, I'm glad you were able to have a fitting tribute for your lovely little girl. I am bowled over by your bravery when you talk of your continuing journey to conceive.

Sue, so glad to hear that things went as well as they could yesterday. You have been amazingly strong throughout this awful time, allow yourself some time for physical and mental healing and then that inner strength you have will get you through the rollercoaster of TTC and pregnancy again so you can achieve your
dream of completing your family. Sending you lot of love and strength. Xx

sue Big hugs, you're an amazing woman. As olives says, do give yourself time to heal and be gentle on yourself, you've been through hell. We're here when you feel you are ready to try again, some of us seem to be here for the long haul! :) Sending you lots of healing thoughts xx

Sue - you are completely amazing, and so brave. Big hugs to you and your husband xxxx

Hello to everyone,

I have been reading every day, not commenting but going through the ups and downs with all of you. My thoughts are with those going through tough times.

I have been feeling quite rough, combination of prednisolone and morning sickness, but it seems to be easing a bit now. I had the 12 week NHS scan yesterday and all looked ok. NT measured 1.0 mm but just waiting for the blood results to come back to get the trisomy risk. I am 41 so am a little worried, but the measurement was promising. I was put forward a week too so am apparently now 13 weeks :-). I have just about stopped the steroids now (been weaning since week 9) and have stopped the cyclogest, so all on my own now!! I had the last intralipid transfusion today at the NL clinic in Epsom so it really feels like we have reached a milestone.

I hope this is encouraging to others on here. After 5 miscarriages and with very high NK cells, I never expected to be here but this is my first time on treatment with Mr S and everything has been text book (so far!)

It is difficult to relax completely - all of us on here probably feel the same - and things can still go wrong I know, but I am just crossing my fingers and working on relaxing into it. Now to try and shed some of this steroid bloat!!!!

Cate
x

Fantastic Cate - great to have some more good news on here! xx

Sue, your continuing bravery is an inspiration.

Cate, our stories are v similar - I'm at 20 weeks but also had 5 mc. Everything has also gone textbook for me with Mr S and I'm also measuring a week ahead since 12 week scan (maybe it's all those steroids?!)

Just to let you all know that the 20 week scan went very well. We're definitely having a boy and all looks good. They want me back next week to measure the cervix again as it was slightly short, but tbh I think it's a red herring as I've been told before that I have a small cervix. Anyway, we'll see. I'm still measuring ahead so have decided to accept their estimate now even though I know my dates are bang on! So today Im 20+3.

sue big hugs from me too. We are absolutely here for you when you feel up to ttc again.

Welcome mo and cate (and anyone else I've forgotten).

Great scan news sarah!!

Jonty is doing ok, on a cocktail of drugs including.. .Wait for it...omeprazole! I have to grind it up and try and dissolve it in ebm - I told the pharmacist I wasnt mixing it with apple purée (he hasn't even made it to his due date yet so i think that mixing it with food was not the worlds most practical suggestion).

I am still on edge, especially when I have to leave the house with him but I'm getting there - just because I have to really, much as I would like to stay indoors every day.

Big hello to everyone.

Great news from Cate and Sarah!

PQ Im not surprised that you're nervous about going out and about but good on you for biting the bullet! Lovely to hear that Jonty is doing well

All's well here - im getting quite a sizeable bump and baby is squirming around lots which is lovely and reassuring! I have a bit of SPD but its manageable at the mo.

Big waves to all.

Hi again everyone,

Just when I thought everything was going wonderfully, I have the results of my NHS triple test and it is a risk of 1 in 130 for Downs. Apparently my bloods were not too wacky (the hCG was 2.38 where 1 is the average and the PapA was 0.83 where closer to 1 is better although this one is better than my hCG). My age risk is dragging it down and the bloods aren't quite good enough to lift me out of the high risk category. At 41 I start off with a 1 in 70 risk so it has improved but not sufficiently. The nuchal measurement was 1.2 which is good.

I have decided to go for a more indepth scan at the Fetal Medical Centre before making decisions about an amniocentesis at about 15/16 weeks. Anyone with any experience of this who could give me some advice? We are not sure what we do if it came back positive for Downs - haven't even thought that far ahead but I am definitely a 'need to know' person.

Hi Cate - my HCG was higher than yours (as was my PapA) so I decided to go for a detailed scan at the FMC as was terrified of the risk of miscarriage with a CVS. The scan was brilliant and made my numbers significantly better (10x in fact!). Unless the numbers are off the scale, they seem to suggest that bloods are more often than not simply 'maternal variation' and not to put too much emphasis on the numbers alone. Your nuchal measurement is great. Based on our low risk at FMC we decided not to have invasive tests and waited until our 20 week scan (also at FMC) to see if any soft markers were revealed and then decide. Fortunately, the 20 week scan was also very reassuring which then halves your risk again. Without invasive testing there is always a risk, regardless of how fabulous your numbers look and even at 1:130, that is still a very low risk. My hospital told me they had a lady with 1:50,000 who was 'the 1' so you really never know for sure and it's a personal decision. Having suffered 6 miscarriages I was just too scared to 'meddle' unless the numbers were appalling but I completely understand the desire to know for sure. Good luck at the FMC - when do you go?
Sue - I've read your posts and have not known what to say. I echo all the comments from everyone on here; I am not sure where you have found your strength but I read your updates in awe. Your experience is really painful to read about, let alone experience and you deserve peace and happiness to replace all the pain you have been put through. May your beautiful angel Scarlet guide you through the coming months xx
Sarah great scan news.
PQ - I am not surprised you are terrified - what a shocking thing to experience. Am glad to hear that Jonty is doing well.
Really sorry if I've missed anyone but hello and best wishes to everyone at their various stages on this often painful journey xx

Thanks Delta. My appointment at the FMC is tomorrow at 1.30. I rang them today so was pleased to get an appointment so soon. It is really encouraging that you recommend going there. If they calculate my risk as better than 1 in 130 then I will probably just wait for the 20 week scan as I have read good things about them.

Sarah that's such brilliant news about the scan - hurrah! I hope you're managing to feel positive in a 'I'm having a baby way. Such a great milestone. And so good to hear things are going way for you olives! So, so good to hear.

I echo what Delta and others have said Cate in that FMC are really thorough and very reassuring. I hope you get good scan news.

PQ don't blame you for being very nervous! I will come drag you out and we can have a walk in the park or stay in and drink wine now we are able to

My little Pred Baby is 14 weeks today, can you believe it! We've just come back from him having his second lot of injections and he's just over 15.4lbs. They say he's very long! Although I have nothing to compare it to of course being my first :)

Love to all and hope we continue to get good news xx

Hey all - what's the plan for Saturday for those of us able to meet up?

Ohh I need to find a suitable location - from memory some places turn into a kids playground which isn't ideal for us. Can anyone recall where u met last time ? Southbank but not not exactly which restaurant . . Suggestion welcome was thinking 12.30 ish ?

I had a scan at the FMC today and they put my risk at 1 in 1159. My bloods were better today (hCG was 1.8 instead of 2.38 anad the PappA was up to 1.3 from 0.89) and everything looked normal on the scan, heart ok and nasal bone present. Factoring in the fact that my background (walking in the door risk) was 1 in 58 according to them, I feel quite reassured and probably won't have any more testing. Amazing how much difference a week can make! The nuchal measurement was 2.4mm so it has doubled since last week but apparently that was ok as the baby has grown too. Thanks for the advice on here. I am really glad I went to the FMC even though I waited around at least 3 hours :) It is a shame really that the NHS don't offer more comprehensive scanning as it can cause unnecessary worry.

Hallo again everyone. Haven't been on here for months (as I wasn't having treatment any more and I wanted to forget about it all for a while), so sorry if I'm completely out of date with how everyone is. I hope you're all well. I'm going to come up to the get-together with LJ71 on Saturday. Would be nice to meet everyone in person.
As for me, I'm on my third month of DHEA. I'm very impressed with its effects so far, as it's completely reversed all the things I felt were wrong since having my DS. Lots of fertile CM now, loads of sex drive(!), ovulation on day 14 and heavier periods. Also a beard of boils like a teenage boy, but all in a good cause. I feel mentally very good. Not pregnant however.
This month I'm trying Clomid alongside the DHEA and I'm also on an NHS waiting list for a laparoscopy. I finally saw the head man in my local fertility clinic, and he said that my best chance of pregnancy next month would be with IVF. This I found interesting as Mr S has never suggested this and my FSH is still in the ideal range (pre-DHEA).
(Also, very cheeky I know, but is anyone who is going on Saturday taking DHEA? I run out of tablets today and my next order is overdue. Could anyone possibly give me a few tablets to tide me over until next week? I'll pay for them of course. They are gold dust to me!)
Looking forward to tomorrow and meeting you all.