TTC: Pregnancy on Prednisolone or similar part 7

[ChoccyPud]

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!

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

Very quickie from me, cooking tea for an impatient DD! Big welcome to Aba, and lemon I take Folapro, last time I bought 120 tablets from Amazon, before that I was buying the 90 tablet bottles from World Wide Shopping Mall worldwideshoppingmall.co.uk. They're not cheap though :(

/waves to all, great news duggs on the lack of the red stuff and impressive follie abney.

Forgot to say that's that l-methylfolate lemon.

Welcome Aba!

Great news that the bleeding has stopped, Duggs. Long may it continue.

Choccy - Feel free to vent on here. I can only imagine how it feels to be back at square one again. Has Mr S suggested what he wants to do next in terms of tweaking your treatment? Take it easy on Monday, and if you feel you need to take some more time off, you must make sure you do.

Sending a ((hug)) over to choccy

Welcome aba

Duggs so pleased to hear bleeding has stopped! Enjoy the rest of your hols!

choccy so sorry to hear your so low. It's an awful time and I really do empathise, all I felt last year were people around me were pg and then carrying and giving birth whilst I couldn't get to hang on to any of the 3 pg's I had. It's a dreadful feeling and really tough to get through. Never mind on top of your recent loss. Just to let you know we're all thinking of you. I really hope Mr S can come up with a plan for you!!

choccy I've been thinking about you a lot. I have a couple of thoughts hope u don't mind me putting them down- am sure all is covered anyway.

So presumably u have to have april off ttc?
Does that mean then in may mr s re tests your nk cells levels? I do think it depends on how close to a mc you r when u test the affect on the results.

Once you have a re test figure u will then know if - a they've got higher b - stayed te same or c- dropped.

If a or b then I guess it depends on levels. If free got through with her super high levels then surely it indicates there could be something outside of immunology being missed?

If they've not changed or dropped then again it just doesn't seem to make sense that you can't get through and is all down to nk cells alone?

Of course u will have gone through all these thoughts yourself, I just can't help but think there maybe something outside of nk cells that is being missed???

The only way to rule out chromosonal
Issues is ivf and CGH but that is an expensive "experiment" as it were? Any thoughts anyone??

Hi Duggs - hope you aren't spending all your holidays thinking about me, you've got quite enough to think about mostly RELAXING!! Well, I'm obviously up at stupid o'clock coz of bloody Pred waking me at 5am as usual...

Dh and I have been thinking about what next as you can imagine. My NK levels hadn't dropped significantly after my December mc. Hence he added Hydroxy. I haven't had them tested again this time, little point spending the money.

I'm seriously thinking of ditching the Pred for next time and giving just the Hydroxy a go. It's certainly had some sort of effect on my immune system, as I've had colds since starting it. Yes it is a gamble, but isn't it all a gamble and if the Pred is not making enough of a difference to my NK levels, why put it in my body? I don't get too bad side effects, except waking up early. Maybe this mc was never going to make it anyway, maybe it wasn't only due to NKCs. I get pg very easily, maybe it's an unfussy uterus thing? Need to research that.

The other potential option I suppose is an even higher dose of Pred. Well, I'd rather give it one go on just Hydroxy rather than risk having an even longer tapering off period - I find it really gruelling and adding insult to injury that I have to spend 4 weeks tapering off the Pred after mc-ing. It makes it difficult to mentally get over the mc and ready yourself to go again.

As for other non NK related issues causing my mc's, it's impossible to find out as I lose them so early and don't leave anything for him to test. This one held on longer than Dec's, which had gone by 5 weeks I think. I didn't start spotting until 6.1 this time, but whether it had gone by that point and the cyclogest was making me hold onto the lining, I'll never know.

As for cgh etc, It's an awful lot of money that we don't have. I'll see Mr S before we start again (and you're right, earliest will be second ovulation from now) and see what he thinks. He mentioned being his guinea pig on just Hydroxy back in January. Maybe now is the time to give it a go... What have I got to lose? I know I can deal with an mc, and what's seven when you've already dealt with six?

So much to think about. It's so good to have this thread to bounce ideas around and chat to people who understand.

As has been said on here before choccy Louise told me there is a lady who is almost full term on Hydroxy only at NLC. so it obviously works to dampen the immune system to a certain extent. I wonder if he has done any trials on this?
When i said a month ago to Mr S I don't know whether I could stand the lack of sleep any more he pescribed me Hydroxy on it's own to take if i couldn't stand another month on pred. haven't taken it yet as was ok with pred last month. He did say that they were still pilotting it so it was at my own risk.

Aba Hello, nice to meet you

Abney Great news on nice follie!

Duggs Yay for bleeding stopping - strictly relaxation for you now!

Choccy It must be so difficult to know what's the best thing to do. FWIW I think you're probably right to give just the Hydroxy a go next time. I hope the early waking settles down soon and don't go back to work tomorrow if you're not ready - you've been through so much and a bit more time off may be required. However I know that sometimes work is a good distraction so just do whatever feels right for you.

I'm getting nervous about the lap & dye now, I hate having general anaesthetic! I also hate that I'm having to wash in antimicrobial wash (was found to be MRSA +ve at pre-op assessment) I had to do a 5 day course of wash and ointment when I first found out and then had a clear swab so this is just precautionary before the surgery - it's horrible stuff though! Right, time to drag myself away from the laptop and off to the garden centre. Hope you are all having a relaxing Sunday!

Snoopygirl when did you have your scan. Let's hope it is our month and we move off the bottom. Enjoy your SWI. Ha ha. . I won't do what I done last time i.e. tested on day 10 got BFP only to find out it was the drugs! I see alot people using the ovulation sticks. Is there any point with us on SO?

Duggs still routing for you. I hope you are enjoying your hols.

Choccy Just a recap of what happened to me just to give you some hope. Had MC at 26 and then had 1 Molar and 1 Edwards and then 4 straight MC's and then my DS at number 7 (all late 30's apart from DS who was born when I was 41). I didn't have NHKC before my DS but on the DS occasion I took low dose steriods just in case. After DS I have had 4 more MC on Pred as I was found to have VNKC 3 something. So my history surely shows there is something else (perhaps the same as you). I was diagnosed with borderline 'sticky' blood in 2007 and I reminded Dr S of this yesterday and he said good but the asprin should have sorted this out. I know already I will be on heparin next time. Anyway he said he would retest when pg. I am happy about this as I did read a story that said a womans blood only thickened up in early pg and it was only when she had a blood test that this was discovered hence a successful preg. I don't think I have problems with lining thickness so apart from thick blood issues surely it can only be bad eggs or that 'something else'.

All - it would be intersting to know when people do get preg via SO what size their follicles were. I can't help but think that as my 1 and only follicle is 24mm and the largest last month was 19mm that maybe this is a baby in waiting or it might be just incredible wishful thinking.

Thanks all. Abney you've been through so much but sound so resilient. I think we must all be incredibly strong resilient by nature or we'd have given up already. Thank you for reminding me of your story, it helps right now to be reminded that I shouldn't lose hope.

Snoopy bear in mind that you have to give the Hydroxy 6 weeks to build up in your system before the time you ovulate and ttc, so you might want to look at your dates and get started on it.

I'm kind of used to the sleep thing. What gets me down is that none of my clothes fit properly as I'm so bloated from the Pred. I'm very conscious of it, and obv as its upper tummy region it looks like I could be pg!!

I'll be ok. I'm probably feeling tense about going back to work, but I've got to do it sometime even if I don't last the full day.

choccy that's right about 6 weeks build up. Just have to suffer the pred a bit longer.
I know I shouldn't think like it either but weight gain is a PITA and it all goes on tummy and yes (if you read SO thread) I was asked only a couple of days ago if I had good news to tell!! so embarrassing but it's not the first time. I am now on low carb diet cos I'm desperate. I've lost a couple of pounds without exercise this week as haven't been able to do any due to recovering from really bad cold and no evergy. so next week I'm going to make a real effort.
I hope work is bearable for you tomorrow.

Just a quick one. My hcg level was only 18. Ultrasound showed 2 collapsed sacs. Both chromosonally perfect so this must have been nk cells or something else. devastated. Don't ask what happened next but let's just say carry on nurse or whatever it is called. 4 miscarriages but 5 babies. Enough for DH and I now. We won't get our baby. We are talking about adoption which has been kicking about for a while now. Sorry for lack of other comments. Feel numb. and sad I can give DH a biological child. It will pass I hope.

Duggs, I am so sorry and sad for you :( I am not going to try to use any wise words as I won't be able to make you feel better. Just know I am thinking of you. Life is shit and unfair to the best of people. I wish I could make it better for you xxx so sorry x

duggs, am thinking of you. I have no words that would adequately cover how rubbish this is.

Woke up this morning feeling shite but so much sad news on here recently! Thought I may as well make u laugh with vision of 4 Arabs with head gear "carrying" me up the 3 flights of stairs on some stretcher thing - as they insisted on a D &C even though so early. So confused I just went with it. I woke up to find I'd puked on myself lovely !!! All in all carry on matron / follow that camel scenes

Duggs I've already said, but I am so sorry this has happened to you and while you're away. Just gutted for you.

If you've had a d and c, can they/have they kept the "products" to get them tested? I know it's horrible to think about especially at the moment, but it might give some answers.

I don't know what to say, except look after yourself I'm so sorry x

Oh Duggs am so desperately sorry for you and Mr Duggs. Sending you a virtual hug. Look after yourself.

Shit, Duggs. I am absolutely gutted for both you and Mr Duggs. SO, so sad to hear this.

Knowing that the embryos were chromosomally normal rules out that particular line of enquiry and, as you said, leave you with NK cells or something else that has not been discovered. I am just reading back a few posts and seeing what you said to Choccy. Are you going to try another line of enquiry/see what Mr S says?

I am glad you were able to see the humour in the whole thing (I am sure we can all relate to that ? like those times at a funeral or other sad occasion when something funny has happened and one is able to laugh but, camels or no camels, it is a horrible horrible thing to have to go through anyway, let alone so far away from home. We are all thinking of you.

DH asked why I was upset and so I told him what had happened. He asked whether you were going to cut your holiday short and I said I imagined you wouldn?t. I hope you go sit in the sunshine and have a damn good cocktail or too.

Such sad news on here recently. I do hope that recap of Abney?s gives some hope ? having had 6 pregnancies before her DS is pretty amazing. So glad you did get there eventually Abney and I hope you can fulfil the dream of a second too.

Olives, I don?t blame you for being a bit nervous about the lap and dye and GA. Have you had one before? I was really nervous last time I was ?put under? (for an ERPC) but actually it wasn?t that bad at all. Quite relaxing in a way!

Snoopy, sorry about the weight woes. How awful to be asked that by a friend. I think we can all relate to the Pred/miscarriage weight gain annoyance. I went into this pregnancy a whole stone heavier than I was before the previous pregnancies.

I completely exhausted myself yesterday as I was filming from 7am-3pm at the marathon, standing up virtually all the time and running round with a cameraman. I was coming on here today to happily (if a bit nervously) update that list so that Charlie and I can go up to the third trimester. Seems like such a milestone, but in the light of everything else that is going on it all seems a bit bittersweet too. I will update it without fanfare in a sec.

Hope everyone else is ok.

Charlie and I have moved up to the third trimester. We both have the same due date but I am supposedly one day ahead (I kept the same due date after 12 week scan but they estimated I was 2 days further on) but it's hardly an exact science! PQ will be going up to the second trimester very shortly. Feel free to edit, change, add if there is anything I have missed.

Monday 23rd April

The babies are arriving!
Stogan - V high NKC - cycle#2, DC#1, Baby girl born Sunday 11/03/12 7lb13.5. Our First Pred Thread Baby!
Digitalgirl - High NKC - BFP cycle#2, Baby boy (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12 Our Second Pred Thread Baby!

BFP 3rd Trimester
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 38+0 Due date: 07/05/12
Comedy - V High NKC - BFP cycle#2, DC#2 ? 36+0 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 34+6 c-section booked for 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 34+1
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. DC#1 26+6 Next appt with Mr S, 25th May EDD 24/07/12
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 26+5 EDD 24/07/12

2nd Trimester
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 23+3
coleyoz - V High NKC. DC#2, BFP cycle2, 22+6
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 18+5
Mercator - V High NKC, TTC#2. 18+4
Hopefulfor2nd - High NKC - TTC#2. - 17+4
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 17+4

1st Trimester
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 13+0
London - High NKC, add details!??

TTC ? ASSISTANCE - SO/IUI/IVF
duggs1976 - High/V High NKC - TTC #1 - IVF cycle #1 ?pred, intrallipids, metformin, clexane, cylogest
Havingkittens - Upgraded from High to V High NKC TTC #1 -10 pred ? 3rd cycle SO
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 3
Abney, V High NKC, TTC#2, super ov cycle 1 ?
eurochick - TTC#1 High NKC, pred cycle 4, Super Ov & IUI
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, combining IVF with Immunotherapy
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
Suemays - V High NKC, TTC #2. Superov. (Pred & Hydroxychloroquine)

TTC
ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April mc on treatment.
Willitbe - RMC, NKC not tested, TTC #4 cycle 2 (after m/c 12) Fertility consultant
prescribed pred.
GreenOlives - High NKC, TTC#2, Pred Cycle 2
picolina - V High NKC MC on treatment (taking a break on holiday)
Holldoll - High NKC - Pred, Cyclogest & aspirin
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2, hydroxychloroquine

Current status?
Cherrycheeks - V high NKC, TTC#2
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS

Duggs So sorry, I'm gutted for you

Abney Your story really does give hope of success after lots of heartache and I too hope that DC2 is just around the corner for you.

Free I had a GA back in October for the ectopic so at least I know I'm not allergic to it or anything like that! It did give me a terrible migraine though and that's what I'm dreading happening again, most of the painkillers I had immediately post-op were for my head not my tummy! Hope you can take it a bit easier today after your busy day yesterday - bet it was a great atmosphere at the marathon! Congrats to you and Charlie for third trimester - what a great milestone!

Choccy Good luck with work today, hope it goes well.

Waves to everyone else.

duggs I just read your sad news, I'm so very sorry :( What a thoroughly shtty thing to happen, even though your rendition of the 4 Arabs did make me smile. Is there no merit in doing what I think you suggested to me, go see a different consultant (Gorgy et al?) for the tests Mr S doesn't do? There must be another underlying issue, and it may well show up in one of the other tests? I know it's yet more money, but maybe worth it? Anyway, hope the sunshine helps to heal the wound a little, and big hugs*.

Olives I find I react different to GA every time - even two ERPCs inside 8 months, my reaction was different to both GAs. With any luck you won't get a migraine with this one, but it's worth mentioning what happened last time to your anaesthetist anyway.

choccy How are you feeling now? Take it easy if you're headed back to work.

/waves to everyone

Oh duggs I am just so gutted for you . Take time out on your hols to relax now and try not to think too hard about future plans at the moment.

Duggs absolutely gutted for you.

Free & Cheerful congrats on moving up to the 3rd trimester.

Choccy hope all goes well today.

So sorry duggs. That really is shitty news.