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

Oh what an awful worry that must have been. I am glad he is on the mend now.

Grrr about the follow up appointment. All of the pushing and chasing and calling people who never answer their bloody phones really does add unnecessarily to the stress of ttc.

picolina glad to hear scan went well.

scooter welcome back...what a nightmare holiday! Poor little DS, you must have been so worried. Very pleased to hear he's getting better now. And arsecakes to stupid follow up not coming through

battery Just over a week to go for you then. Did you say you're still waiting for your nuchal?

Thought I'd drag the list over from t'other thread:

Thursday 26th Jan
BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 33+5 Due 10/03/12 next scan 10/02/2012
Digitalgirl - High NKC - BFP cycle#2 28+3 Due 16/04/12 MW appt 25/01

2nd Trimester
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 25+3
Comedy - V High NKC - BFP cycle#2 ? 22+5 due 26/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 22+2 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 21+5 next scan?
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 14+2 Next scan 27/01/12
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 14+0 Next Scan (15 weeks)

1st Trimester
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 10+5 next scan 25/01/12
coleyoz - V High NKC. TTC #2, BFP cycle2, 10+3, Nuchal scan ??
picolina123 - V High nkc, pred cycle 1. Next scan ??
Hopefulfor2nd - High NKC - TTC#2. First scan 8/02/12

TTC
Waiting to test
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
Suemays - V High NKC, TTC #2. Superov cycle 1, testing on 29th Jan

Waiting to ovulate
buster76 - V High NKC, Factor V Leiden
eurochick - High NKC, superovulation cycle 2, pred cycle 2
Havingkittens - Upgraded from High to V High NKC TTC #1
PQ77 - V High NKC TTC #2 (BFP cycle one but mc)
Snoopygirl - V High NKC TTC, #3
Cherrycheeks - V high NKC, TTC#2

WTTC
duggs1976 - High/V High NKC - TTC #1 - awaiting AF then, superovulation cycle3
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 from January
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
Pebbles - High NKC, PCOS - TTC#1

Hi all, I am back here after yet another m/c (was on the first thread all that time ago!). But finally my doc has agreed to prescribe predniolone on the basis of ANA+ test. So I hope that you guys will be able to help me?

So What combination works????? Would you mind sharing what meds you are each on, eg level of pred, dosage of asprin, progesterone etc. Or conversly what you have tried and has not worked?

I have used progesterone, heperin, and asprin in the past, all to no avail. I have never had NKCell testing, so don't know about that for myself.

I have scan-read some bits of the previous threads, but it is alot to catch up on. It is encouraging to see so many successful pregnancies on-going. Congratulations to each of you.

So when I start my prednislone in a few weeks time (when I finally get an appointment to get the prescription!), I hope you will be able to hold my hand as I start. (I have taken predniolone as treatment for asthma/sinus infections while pregnant in the past, so know I don't get too many side-effects fortunately)

scooter, gosh, sorry to hear about your ds. Glad to hear he's on the mend now, but really not the holiday you needed! Pretty scary, I'm sure. I have a redundant appointment with Mr S at St Helier that I can't make anyway as I will be away. I wonder if you could take the slot? Why don't you PM me your full name and I will leave a message for Annabella, then I will do the same and you can leave her a message too. Might be worth a try.

Welcome back willitbe. The doseage depends on NK Cell levels but when mine were just high, rather than very high, the doseage was 25mg from ovulation to AF or in case of BFP, continue to take until 12 weeks and then wean off over 12 days. Pregnacare, Omega 3, 75mg Asprin, 25mcg Vit D3, Folic Acid from now on, daily until 12 weeks apart from Asprin which stops at 20 weeks. He recommends building up 6 weeks on all this before TTC, apart from the Pred which starts from ovulation on your first TTC cycle. If NK Cell levels are V High then the dosage of pred goes up at BFP. Cyclogest starts from BFP 'til 16 weeks. He recommends a 2 month break off the pred after 6 months if not pregnant.

Latest plan of action for me, having had a long chat with Louise, is to take a break this cycle from TTC so that I can have a month off the Pred (as I'd be due to come off it again in 2 months otherwise), make an appointment for my follow up consultation and scan to check my lining with Mr S at the end of my cycle. This is with a view to starting the Superovulation treatment, and if necessary being prescribed meds to build up the thickness of my lining, on my next cycle. My Day 21 results probably won't be back by then but she said that's OK and that I can get them to them when they come in. It's the Day 3 tests that are more important, apparently. She said she would recommend without hesitation to have the hysteroscopy if I were having IVF but as I'm not she said to wait and see what Mr S says. Good to have a plan now!

picolina I missed your post on the end of the last thread when I last posted, but am up to date now. Good to hear your scan went well

Also pleased to hear free's granny is getting stronger.

Hi Scooter, welcome back have sent you a pm about lunch on Saturday and commiserating about DS. How horrific.

Just on lunch on Saturday - there are a few of us but not a big gang and it is not an exclusive gathering. kittens i have noted your request where NOT to go and I agree!

We are aiming for 1pm at a restaurant near Southbank (Waterloo Station or a quick walk across the bridge from Charing Cross). If you would like to come for a chat and a PM me (or post here) and I will send you the venue and my mob number.

Hi to willitbe and mercator. Mercator - I have a 3yr old DS as does scooter and digi (I think a DS not DD?) and I am sure a few others. What we all have in common is a determination to battle NK cells and as duggs will tell you pregnant or with a baby by June! Willitbe - I am exactily ditto Kittens plan.

Great scan news ladies.

free I am getting the free baby stuff for you tonight but can keep in my loft if you want to wait a bit longer. I would completely understand (however I had no buggy or moses basket or clothes when DS arrived unexpectedly. I would not recommend that extreme appoach...)

Hey all,

Thanks for bringing list over Digi your efforts are much appreciated! And welcome back Willitbe. I remember you well. So sorry to hear you have had yet another miscarriage. How far did you get with this one? We all know what you have gone through so can empathise.

As kittens said those of us with just 'high' NK take 25mg of Pred from ovulation (stopping after 14 days if not pregnant) and continue until around week 12.

Those of us with very high NK cells take 25mg from ovulation and upon getting a BFP up this to 40mg. Most of us also have intralipids treatment at this point too (an IV infusion of soya and milk based products said to help reduce the effectiveness of NK cells further).

A couple of us have also now been put on an additional immune modulator called Hydroxycholroquine and there are one or two (maybe just one - Cheerful?) who is not taking Pred and just doing intralipids every four weeks and some who have started taking the Pred when already pregnant.

Oh and most of us are on 74mg Aspirin, Omega 3, Pregnacare, Vitamin D and also Cyclogest/progesterone pessaries of 400 a day, although I think one or more of us might be taking double. I am also taking Selenium for no reason except I read somewhere it was good in the fight against miscarriage and also for high thyroid antibodies.

What have they recommended for you?

Kittens I am really relieved that you have managed to have a good chat with Louise and that you have a plan of action. We all have our fingers crossed for you.

Scooter how awful about poor DS! Is he ok now? So not the nice relaxing holiday you needed, that is a real shame. Who are you trying to get an appointment with? Is it NLC? I would have thought not as that is pretty easy usually. The rest of us would also be very interested to find out whether they can find a reason for your last mc, it was so unexpected and so shocking after a successful 9 weeks scan. The only thing I can think of is possibly it was chromosomal issues? Welcome back anyway.

No news from me today except an annoying bout of constipation again! Thought I had it under control but obviously not. Probably when I was away this week without my usual supply of fruit and prune juice to hand. There are such psycholgical traumas involved in pooing when pregnant when you have had the experience of recurrent miscarriage. Non RMC-ers on threads joke about 'pooing out the baby' but that's not so funny when you have literally been in that situation, as a lot of us on here know.

Scan tomorrow, have to leave the house at 6am. Am dreading it already. So cold, stressful and lonely (no DH this time) making my way on two trains to Epsom and the scary thought of the scan. If it's all ok there will be intralipids afterwards so at least i can relax and do sod all for a while.

Welcome willitbe, I am also on Mr S's plan as per kittens' posting, but being in the v high NK cells category I am on 40mg daily pred from BFP. Oh and another drug that free has pioneered, and choccy and I am now on, hydroxychloroquine.

scooter what a horrid thing to happen on your much-needed break, I hope DS is feeling much better and you can relax a bit now - except for the follow-up chasing, of course, which absolutely should NOT be necessary. As if all this weren't fraught enough, without you have to chase up appointments!

kittens good to hear about your plan, sounds eminently sensible to me. I am curious as to what the difference is between having IVF and trying naturally, as far as the hysteroscopy is concerned? Isn't it all about the implantation? I mean, why would Louise say you should have the hysteroscopy if you were doing IVF but not necessarily for trying naturally? I'm just curious why one and not the other.

Nothing much to relate here, experimented with taking 5 x 5mg pred this morning (instead of 1 x 25mg as I was taking) to see if it made a difference with feeling nauseous/mild heartburn that I've been getting every day so far this week on the 25mg pred. I just wondered, since when I was taking 8 x 5mg pred I had no stomach-related issues at all, but as soon as I take the 1 x 25mg tablet, bang! I get nausea & mild heartburn. Anyway, the experiment was partly successful - I do have mild heartburn today (very mild, it's just 'there' but nothing I need to do anything about) but no nausea. Why the difference? Goodness knows. I'm not taking enteric-coated tablets in either form, so I just don't know.

I did have a mild panic this morning when I was reading another site and saw people vehemently stating you must NOT take Evening Primrose Oil in the 2ww, and I always have (well, Starflower Oil, which is much the same only stronger!). But more reading around seems inconclusive - some say you mustn't, others say it really doesn't matter. Apparently the worry is over it can cause uterine contractions - does it? shrug I don't know, but the jury's out on that one. I did stop taking the Royal Jelly, on the concern about it raising NK cells, although I rather wish I hadn't. Actually thinking about it that may well be what caused my early ovulation this month, RJ apparently is a cycle-regulator and is reputed to make cycles shorter.

I do wish it all weren't so unknown, I hate wooliness! And yes, I'm one of those who would like babies (and men!) to come with instruction manuals

Ari, I can't answer the question about why a hysteroscopy for IVF but not natural conception. I have an offering on the pred question though which may or may not be relevant. If you remember, just before I went to France and was panicking about making up my 40mg dose if I got a BFP whilst I was away, I took my granny's leftover 5mg tablets of pred with me as insurance. On the pot it describes them as gastro-resistant, whereas on my 25mg ones it doesn't. The 25mg ones give me ferocious stomach issues, even when taken with 2 x omeprazole tables - must remember to ask Mr S about that when I see him.

As far as instruction manuals for babies and for me. Well, I don't know about the baby manual but I suspect the instruction manuals for children and men are largely interchangeable

... and for men, not and for me!

Great idea kittens, but unfortunately my 5mg aren't the gastro-resistant ones, I bought the cheapest of the options :) Nice thought though!

Did you know you can actually buy a Haynes manual on babies, designed for the menfolk? Honest! I do suspect you're right about the interchangeability bit :)

Ari are you taking your Omeprazole?? That'll help with stomach issues, heartburn etc. Its not like you didn't sit through the lecture we got at NLC that day... Bad girl! ;)

Looking forward to Sat. Be great to see whoever can make it.

Scooter what a horrible time you've had. I hope DS is much better now poor thing. So not what you needed after the last months. Big hugs to you and I hope you're looking after yourself.

My cycle seems a bit screwed NOT being on Pred. Normally bang on 28 days but was 2 days late this month, only got af yesterday. And v crampy and a thumping headache. Felt v sorry for myself by the time I got home! Talking of tampons I must just say its kind of weird to be using them it seems so long since I've last been allowed to! After my last wtf cycle I wanted to see what happened, so to speak, and so last time must be October. Blimey doesn't time fly...

Here you go, the Haynes manual:

www.amazon.co.uk/Baby-Manual-Conception-Haynes-Workshop/dp/1844257592/ref=sr_1_1?ie=UTF8&qid=1327590560&sr=8-1

"Baby Manual: Conception to 2 Years (Haynes Owners Workshop Manual)"

I have always planned to buy this as a present for DP if we ever get to the point of having a baby!

lol choccy I have never taken even one Omeprazole, I know, I know, I heard Louise loud and clear but decided not to until and unless I need it. I didn't get anything at all on the 40mg dose, so decided not to bother .. bad me

I know what you mean about time flying - it just occurred to me this morning that the last time I was taking the 25mg pred was October too, which seems so very long ago now. I wonder if your cycle is having to re-establish itself with the pred being out of your system? I know the eczema flare-up that happened after I weaned off the 40mg pred had only just started to die down when I had to start taking the 25mg dose again, so it must have taken a good month after I was completely off the higher dose pred before my body started getting back to some kind of normality. Just for the pred to go and mess it up again, I guess. Ho hum.

;

I'm just starting to feel normal again. Not hyper-alert or totally mentally fugged or pg or Pred-fired. Which is about the time to start off on the rollercoaster again. Ironic isn't it. At least I feel like shagging again. I always take that as a sign I'm mentally well on the mend!! :)

Choccy my cycles changed lengths after each MC and were rather erratic after the last one. I've just been counting them up to work out the average length before calling Louise about when to do my Day 21 test. They go a little bit like this...

First cycle after ERPC - 25 days, then - 30, 26, 27, 28, 32, 23, 23, 24, 24, 26, 26.

Most confusing!

Hi to all, was wondering if anyone could help with something. When I had my mc in October because of retained produtcs my private insurance covered me to have an erpc with Dr S as was still ongoing in Dec! It turned out that most of it had pretty much gone as he scanned me first and didn't need to have it done. He said he would remove what was left and send for testing. Cheryl emailed today saying he looked at the results and wants me to make an appointment to discuss it. Bit worried about what they found and wondered if anyone had this done and knew what they tested for?
Sorry for post all about me and hope everyone is ok.

Sounds like a normal follow up appointment to me Pebbles. I had an ERPC on private last April and as well as the op, hospital charges etc, the cover included a follow up appointment when the surgeon told me all was normal, checked AF had returned, had a chat about next steps etc.

I'm sorry I can't remember what stage you're at in all this, but I'd go along and see what's what.

pebbles I agree - just routine follow up - if he was worried about someting he would have asked you to go and see him ASAP. x

Just quickly - I have had a crap day - very stressed at work and lots of achey pains today :( - my nuchal scan has been booked for Wednesday! I will only be 11&5 then but when I called they said that was fine. Of course I am now terrified as my last MMc was discovered at the 12 week scan despite lots of previous good scans. Also I am worried that they will find someting wrong too :(

Sorry about me post. I need a lie down .........

Hi pebbles
They sent both my 3rd and 4th micarriage off for chromosomal analysis. My third came back with patau syndrome (not good!), female and my 4th came back normal female. Had an appointment with consultant both times. I think they like to see you face to face even if things appeared normal. They did say they cant always be 100% on the sex as some of your own tissue might of got mixed up with the sample. To be honest I didnt realise I would find out the sex at the time, felt a bit weird and made it all feel very real!
Hope it goes ok.
xxx

p.s thanks for the new thread sue
I work on the neonatal intensive care and special care baby unit digi

I emailed Louise today re: no positives on opk and bleed midcycle - suppose to be ovulating! She advised me to see GP and have CD 1-3 FSH, LH, E2 and CD 21 bloods. Anyone know what E2 is ?

xx

Hi all - been a long time since I've posted but have been keeping up with the trails and tribulations (and positive scans!). Thank you for the new thread - I'm sure we'll move through it fast!
Scooter - do sorry to read about your holiday nightmare you really deserved a good break x

buster, I think E2 must be Estradiol.

Thanks for the reply Buster I am probably worrying unnecessarily but you know how it is!!

Evening all. Just letting you know that I won't be able to make it on Saturday as we have to go bloody house-hunting again. I'm disappointed as I was looking forward to meeting everyone. Our buyer is now putting pressure on us to complete by the end of March, which is going to be nigh on impossible unless we move into rented accomodation. Free - thanks for your offer of a rental place! However, I think I'd prefer to avoid the journey through the Blackwall Tunnel with ds in tow at the end of the working day if possible. A colleague did that journey with her ds every night after work and it was quite hard on him as it would sometimes take forever.

Scooter- Sorry to hear you had such a scary time on holiday. Really not what you needed. I really hope your ds is on the mend now?

Kittens - Does it feel better to have a plan of action in place?

Picolina - I think I also missed your message on the old thread and didn't congratulate you! Sorry and good news.

Ari - I guess you were probably trying to avoid taking it, but do you need some omeprazole? I've got an unopened pack if you do want to give it a whirl and see if it helps. Just PM me and I can post it to you.

Evening ladies. Is the Omeprazole something you take when on Pred during pregnancy? Mr S has never mentioned it to me. Luckily, despite my generally gippy and IBS-prone stomach, I had no problems with the Pred on my first cycle of taking it.