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TTC/Pregnancy on Prednisolone or similar part 4

993 replies

digitalgirl · 19/12/2011 11:28

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 here

Part 2 here

Part 1 here

OP posts:
duggs1976 · 04/01/2012 20:48

I can't take the asda credit ( asda scares me) but for those prices I will venture in! It was another super ovulator x every little helps as tesco say.

Coconutfeet · 04/01/2012 21:15

Oh gosh, it's so up and down for everyone on here isn't.

Sue - So sorry to hear your news. As you say, it's better to know now rather than building up hope over time, but still a horrible kick in the teeth and gut wrenching disappointment.

Congratulations Pico and fantastic news Free! You're so close to reaching that second trimester milestone.

Well, we've accepted an offer on our flat today, which is good news. It's a higher price than we were hoping for and, assuming it all goes through OK, we'll benefit from Foxton's 0% deal which saves us a few grand. We just need to find somewhere to buy now...

digitalgirl · 04/01/2012 22:10

free fantastic news on scan! You do realise that loads of people have their nuchal/dating scan at 11 weeks and that's them ticked off for the first trimester? You're sort of ticked off now (well, officially on Friday). When's your nuchal?

iggi am also having lots of uncomfortable stretchy pains today and yesterday. It does make me feel a bit more miserable...even though I know they're good pains. But you have my sympathies re: worrying pains.

pq no fever, just an annoying rattly chest that I think I'll just have to ride out. Next available gp appt is Monday evening!

Ooops, was gonna do a massive long post name-checking everyone but DH has just walked in the door so will catch up later.

OP posts:
snoopygirl · 05/01/2012 04:23

help ....I can't sleep it's 4.15am and I haven't dropped off yet! Big scrap with DH which prob on mind which meant no SWI. Basis of scrap was In Law's as usual.
Going to try sleep again, might get an hr before DH gets up and starts making a bloody racket!

cherrycheeks · 05/01/2012 05:10

Hello snoopy- I'm also awake... been up since 2am since DD woke me. She's fast asleep now but of course the pred stops me from doing the same!
Such a bloody lonely time the early hours.Sad

picolina123 · 05/01/2012 07:16

thank you everyone for the congrats

hi sue, thankyou for the congrats.im so sorry for your news, this is such a rollercoaster , my friend was saying to me yesterday you have to be positive yada yada yada but sometimes for me it hurts more when you are, last time i waitied until 11 weeks preg to start reading preag books and miscarried 3 days later( before dr s) this time i have wait for birth! i know what you mean about preg tests, i did 3 on first day, 2 first response and 1 normal, it only showed on first response, but still i've been doing normal tests yesterday and today and prob everyday until the cows come home! i wont trust anyof this until i'm having the sleepless nights due to a screaming baby !

Arian- def mentalling !

Free- im so happy for you!

cheerful- only just pregnant, period due friday, whats intralipids? i called clinic on tue and all they said to be is go on 40g pred, cyclogest, asprin , pregnacareplus, will look it up.

ColeyOz · 05/01/2012 09:02

Sue - so sorry to hear your news:( I hope you are feeling OK - try to take some time out from all this TTC stuff if you can even for a few days.

free - such fantastic news about your scan! I really have a good feeling about your baby - I don't know why, I just do:)

picolina - did you have v high NK cells? If so you will need to go up to 40mg pred and have Intralipids at 4,8 & 12 weeks. Intralipids are a drip of soy protein and other ingredients (not entirely sure) which takes a few hours at New Life and apparently coats the NK cells to stop them from acting.

Well I'm fretting a bit - I've been quite sick for several days but now I'm not having so much sickness and only mild nausea. So of course I'm stressing. My scan isn't until next Wed so I'll have to wait until then to see. I seem to remember others around the 7-8 week mark saying they only had mild nausea? I know the pred does suppress the nausea too.

Having a lovely time away though - its just so beautiful here but still have the constant mentalling:(

freelancegirl · 05/01/2012 09:15

Hi all, sorry for those of you who couldn't sleep. It is indeed very annoying to be up at that time.

Digi you still got that terrvle cough, how frustrating. Can you remember what stretchy feelings you got with ds? There are bound to be a lot. Especially as you are almost 3rd trimester! Ah, other people's pregnancies go so quickly dOnt they.

Pico, they haven't mentioned intralipids to you then I guess you don't need them. It is an infusion of soya, milk and egg (I think!) based products that those of us with very high cells have upon bfp and again at 8 weeks abd 12 weeks. Mr s also wants me to have an extra one at 16 weeks just to give my cells another blast. Research has shown they coat nk cells and make them more inactive. If my scan goes ok tomorrow i will be having them again.

Coconut great news about your sale! Especially getting that deal with Foxtons. I've had a flat on the Market for over a year now and it is a strange Market. I think we've decided to rent it out now as it is expensive running two flats (although fun, as the other is in brighton). We are actually going to go look at two flats later (near you PQ!) to see where we might move to (in a complicated manoeuvre involving renting out two flats and buying a third).

Digi, as you asked, if everything is ok tomorrow my nuchal is in thurs at FMC. I have actually had a booking in appt date abd also a nuchal date at my local hospital come through but I think I am going to cancel them. when I saw mr s (deep breath as this means speaking like a pregnant person for the first time) he literally flinched when he heard which wasn't local hospital and i have to say it doesn't exactly inspire me either. He suggested I actually get a referral to him and his team at Epsom! So, even though it is a bit if a schlep to get to, which I need to bear in mind might make things stressful come a possible birthing time, this is an option I think I am going to take. Obviously I have to stay pregnant first. And of course there is the rather scary prospect of the nuchal to desk with too.

But what does everyone think? Dh has a brother with a big house not so far from Epsom which might at some stage be handy. We can get there in an hour and a half at busy times.

hopefulfor2nd · 05/01/2012 09:33

Ok, here goes..... POP, POP,POP,POP,POP,
First time taking the preds! Had a few tears last night. Such a mix of emotions, especially as it was a year ago when we started ttc and I was so full of myself how they'd be a baby by Xmas. how naieve - can't spell it!!

Free, sounds like a lovely idea to see Mr s all the way through. Does your local hospital have a bad record?

Coconut, well done on selling your flat for more than u hoped! Fab news.

Pico, I have h nkc and so won't be needing intraplids when/if get pregnant. Just the pred and cyclogest.

Coley, PUPO! X xx x

Waves to all x x x

freelancegirl · 05/01/2012 09:36

Crossed posts with Coley. It's so funny to see my own mentalling reflected back at me! I've had that woken up feeling totally not pregnant feeling today. But yes if you look at my posts from 6, 7, 8 weeks and onwards they all sat the same. The days/times I feel ok I am worrying. Baby was alive yesterday so obviously hasn't minded the times I feel well so far. I am eoth you all rhe way though, these are the longest and most internalised days ever!

Pico, did you say you were seeing mr s at St helier in the Nhs? I know some Nhs people do have intralipids but I think it has to be done privately. But he would have mentioned it if it was part of your treatment.

Right am off on an hour long bus journey to try get my laptop fixed.

eurochick · 05/01/2012 10:16

Morning all!

The post in my head before I logged on was "please tell me the sleep gets easier" but I can see from above that it really doesn't! Eek. I started the pred yesterday and just couldn't sleep last night. I am now at my desk feeling like I have just stepped off the red eye from NY or something. I think I snatched a couple of hours in between all the tossing and turning, somewhere in the middle of 2am and 5am. I was awake for a couple of hours wondering what the hell was going on and then I remembered that it can be a side-effect of the Pred. It's a bloody miserable one. But if it works, it is worth it.

freelancegirl · 05/01/2012 10:39

I think it does get a bit easier you know. Obviously I am a bit if a weird one as I've got pregnant both times I have been on 25mg from ovulation but I only remember a few sleepless nights as my body got used to it. I remember a few crazy energy rushes around day 10 Ish on it.

eurochick · 05/01/2012 10:49

Thanks, free. I was a bit taken aback. At about 2am I did remember Mr S talking about sleep issues but I didn't expect it to start from Day 1!. I do tend to react "well" to drugs though - even caffeine. More than one strong coffee a day and I get the shakes! I guess it is a good thing but I do feel properly vile today.

hopefulfor2nd · 05/01/2012 11:10

No sleep to look forward to then! Like you say though euro, if it works its worth it! X

freelancegirl · 05/01/2012 11:11

I am the same with caffeine etc. Definitely the first few nights sleep on Pred for me have been difficult but hopefully uou will find it settles down in a few days once you get used to it. Hunger was an annoying gripe for me though the first time, made easier by the counteractive effect of the hydroxy the second time.

Arianrhod · 05/01/2012 11:17

Morning ladies ... a quick comment on the sleep angle. I'm not sure if it gets easier, or you just start getting used to it. I can however recommend having a partner with a cough at night - it makes you so damn tired, you sleep through even the pred-induced waking times! Grin

My DP actually raised the sleep effect the pred had on me with Mr S yesterday, I didn't realise he was quite so concerned about it. He said it made me so tired it made me very run-down, and that worried him. He asked Mr S if there was anything at all we can do, and Mr S said if it gets too bad to contact him and he could prescribe something to help with sleeping. He did offer to prescribe me some now, but I said this isn't something I want to do, thanks - I want to take as little medication as I possibly can. I'll put up with the sleep deprivation if I can have a baby at the end of it - sounds like a fair exchange to me!

free I don't know if Mr S has mentioned to you already, but he told us of another lady that is also on the hydroxy after having previously had several MCs. She did have a baby after the MCs but developed severe pre-eclampsia and the baby was born very small (I think he said she is either abroad, or somewhere far away and so couldn't be under his ongoing care at the time). She wanted a second baby, so this time she's on the hydroxy as well, and is now 28 weeks, well and healthy, no pre-eclampsia, baby is the right size and weight so far. Sounded positive to me!

Just as a very quick update for me; Mr S has told me to double up my cyclogest on my next pregnancy (next?! I love his optimism!), so taking 400mg twice a day. He did say (and this is the reason for mentioning it, for info for you guys) that you don't have to take it at opposite ends of the day, you can take two together at nighttime if you wish. News to me! I'm not sure why he wants me to take double cyclogest since my progesterone levels haven't ever been checked so aren't known to be low, but perhaps it's a case of better to be sure. I'm to carry on taking the hydroxy, and the same 40mg pred/intralipids from BFP.

I did raise (again) my fear of my age/egg quality, and he was very tolerant of my fears, explaining again exactly why he isn't himself worried. He said ladies with poor egg quality don't get pregnant very easily; those who do get pregnant fairly easily don't in the main have bad eggs. Although there is of course still the higher risk of chromosomal issues; there's more of a chance at my age of getting eggs with problems, hence the higher risk of miscarriage anyway. But I know that. He still feels strongly that I should continue to try, so that's good enough for me.

I also asked (again) about just aspirin for the MTHFR, and asked how come other consultants in this field prescribe Clexane. He commented they probably aren't specialists in this field, to which I remarked that some of them are, for example the doctors at ARGC. He then explained that these are all IVF patients and they do indeed prescribe Clexane for IVF ladies as it helps with implantation. This makes sense to me, as I think the majority of people I've seen mention Clexane when they have MTHFR are IVF ladies. Not all, but certainly most. He went on to say the practice of this actually started with him and his research, as it happens, which was very interesting to hear!

Anyway, just thought I'd share that for general information, might come in useful for others at some time!

/waves to everyone, hope your new year is starting out well. And duggs, your attitude of "I'm fecking well going to be pregnant by June" made me laugh so much I read it out to my DP last night, made him laugh too! Love the spirit!

Buster76 · 05/01/2012 11:21

Morning everyone!!
Great news on the scan free - I can only dream of getting to 11 weeks.
Well done pico
Sorry sue - its sooo rubbish, totally plays with your emotions!
duggs here's to lots of preggers ladies by June!!
I actually went to see a card reader last March, was hoping for some positive thinking (dont usually believe in all that guff!). She said the next pregnancy would be fine - wrong! I would have a baby, possibly twins by November. Her predictions work over 2 years.....so heres still hoping the latter will come true!

Well still BFN for me and AF is 3 days late! Can the steroids delay it?
I am actually off sick today - full of cold, first cold in 2 years, so the steroids must be doing something!
Please can someone move me from the waiting to test list? Just wish AF would come now so we can get on with it Wink I am so inpatient!

xx

snoopygirl · 05/01/2012 11:47

Hi

Thanks cheery for you late night message... I must say the pred is powerful stuff. I am a person who needs lots of sleep at least 8hrs. I have had about an hour between 5 and 6. So far got DS to school, gone shopping, sorted scrap out (a bit)with DH (got it all out on phone just now and I didn't hold back!) and I don't think it's worth me laying down cos I don't feel too bad!!!! Unbelievable stuff.

Echo what free says though that was day one of tabs and I seem to remember this happening last cycle. It def settles down for me after a couple of days. If I ever have another baby i will be completly prepared for the sleepless nights!

ari interesting what Dr S says....do you get pregnant easily then?

Arianrhod · 05/01/2012 12:01

snoopy Well it seems so - or at least, sort of! We started TTC May 2010 after I had my IUD removed, but I didn't get pregnant that first time until November. I did think at the time though that the IUD had completely messed up my cycles, even though it was the non-hormonal one, so it's possible it just took my body a while to get back in sync. After that, pgs 2, 3 and 4 have always been within two cycles of trying after miscarriage. I'm not sure whether that means I get pregnant easily or I've just got the dreaded "unfussy womb" syndrome!

I'm with you on needing at least 8 hours sleep ... Mr S said yesterday that he only needs 3 or 4 hours a night. That's my idea of heaven - imagine how much more you could get done if you still felt fine after only having 4 hours sleep!!!

snoopygirl · 05/01/2012 12:21

yeah like reading more Mumsnet! hehe

DH only needs about six too, and he sleeps so well. He always gets up to put DS to bed as they can both drop off in minutes flat whereas I am staring at the ceiling for ages.

wish time would hurry up with this 2ww thing... on holiday I barely used a couple of sticks unlike first time. Now I'm back home I have the feeling I'll be finger taping and ordering extra sticks to waste!

freelancegirl · 05/01/2012 12:29

Ari that's a great post with lots of juicy info. Well done for asking all those q's. My meetings with him at the mo are just focused on scans but I intend to do another proper interview with him soon for the documentary so will start amassing some questions. High up there is the experimental treatment with the hydroxy. Dr Google tells me no one else is trying it in relation to miscarriage. Yes he did mention someone else on it a while back but it is good to hear it is going well for her still. How have you been on the hydroxy? I found them fab. interesting about doubling up on Cyclogest. And everything he said about clotting etc. He really is a very clever man!

Am due to go down to 20mg if Pred on Saturday, having hovered on 25 for an extra 3 days. Am getting the odd ache in my limbs, a few vibrating feelings again and also some shivery feelings, like if I had the flu. Looking forward to being Pred free by the third week of the month.

Can you give me your opinions on flying? I really am desperate for myself and dh to take this holiday. We have had such a relentlessly stressful time. If mr s gives me the go ahead, it really is ok for me to go isn't it! I think cheerful freaked me out a bit the other day by saying you weren't going to fly at all. I have no clotting issues. Wondered what other risks are there? They say rhe second trimester is definitely the best time for these things abs I would be 15 weeks.

Stogan · 05/01/2012 13:05

Hey ladies . X

free I flew to Paris at 15 weeks and was totally fine Hun. Also flew to see mr s at 16 weeks which he advised due to our long journey !!

Good luck coming off the pred, I was awful and was actually signed off work for 2 weeks coz I just couldn't function, hopefully u will cope ALOT better than I did !!! X

Hi to everyone else x

ColeyOz · 05/01/2012 13:11

buster - sorry about the BFN. Steroids do delay AF - how long ago did you stop them? It can take a few days to a week I think

free - thanks for the reassurance. Its so tough! I would love to just relax a bit more but that seems unlikely. Oh well - under a week now till the scan!

Regarding flying, I did ask Dr S and he said it was fine to fly - especially after first trimester. I decided to do this flight to Italy because I already had it booked and its only 1.5 hours so shouldn't be a problem. On his recommendation I took Heparin the day I flew (I also took one the day before for good measure). I'm not on Heparin this pregnancy but was last pregnancy. I would ask him about your flight as will be longer (you mentioned Carribean?) so he may be more wary - not sure? All I can say is holidays change a lot when a baby comes!!! No more sitting on the beach relaxing so I would make the most of it:):)

ColeyOz · 05/01/2012 13:20

Updating the list for today. Noticed my days were a bit behind. Will add one day to everyone else.

Thursday 5th January

BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 30+5 Due 10/03/12 next scan 13/01

2nd Trimester
Digitalgirl - High NKC - BFP cycle#2 25+3 Due 16/04/12 MW appt 25/01
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 22+4
Comedy - V High NKC - BFP cycle#2 ? 19+5 due 26/5/12 next scan ?
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 19+0 anomaly scan 05/01
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 18+5 next scan?

1st Trimester
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 11+2 Scan 6/01/12
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 11+0 Next Scan 10/1/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 7+5 Scan 11/01/12
Cornflakes30 - V High NKC, underactive thyroid, intralipids, prog, 7+5 Next scan 11/01/12
coleyoz - V High NKC. TTC #2, BFP cycle2, 7+3, Next scan 11/01/12
picolina123 - V High nkc, pred cycle 1

TTC
Waiting to test
buster76 - V High NKC, Factor V Leiden.
Janethomas
Snoopygirl - V High NKC TTC, #3, testing 10/11th ish
eurochick - High NKC, superovulation cycle 1, pred cycle 1, period due 13thish. Maybe.

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
Havingkittens - Upgraded from High to V High NKC TTC #1
PQ77 - V High NKC TTC #2 (BFP cycle one but mc)
Hopefulfor2nd - High NKC - TTC#2
duggs1976 - High/V High NKC - TTC #1 - Superovulation cycle3

WTTC
ScooterChaser - V High NKC - TTC#2
ChoccyPud - V High NKC - TTC#1, review w/Dr S 14 Jan.
Arianhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1 from January
AandRmum - High NKC
Suemays - High NKC, TTC #2

Buster76 · 05/01/2012 13:32

Thanks coley I took my last steroids Sunday morning, so 4 days ago. x

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