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

Welcome to gransol and so sorry for your chemicals. I wish you lots if luck.

London great you had a good scan will keep fc crossed for you.

Are you going back for a consultation when you get all your results Duggs?

Well I did a test tonight and barely anything there after a lot of squinting so looking like a chemical for me as well. Feeling kind of numb and exhausted by thus whole b**y ttc thing and feel like not many options left now really. Will test again in the morning with fmu just to be sure.

Good luck testing tomorrow sue there can't possibly be anymore chemicals allowed this week and as you saw a nice strong line yours will hopefully be the one that sticks.

Charlie am I going mad? I thought you had a DC already?! Sorry, it must be good old baby brain kicking in. Good news on your scan and well done for not gaining too much weight. A low GI diet is always good I think, but particularly hard in pregnancy.

HelterSkelter - what a lovely blog that is. Great to write it down like that. I am not sure if you know but I have been filming my miscarriage/treatment experience and intend to speak to other people about it too. I might give you a shout about that. Have interviewed Mr S a few times too. I am a freelance journo so my urge is to make a documentary about it, I need to do a lot more work on it though and motivation has been a bit of an issue! It's ongoing though. So glad your scan went well too, bless you for shaking on your way in. I am sure we can all relate to that.

I did hear a short item on the radio about that immune issue Euro. It just goes to show it is becoming more known about.

Wow Duggs that certainly is thorough testing. I am by no means a doctor either (would you believe..) but do you think there is something about the Pred/intralipids etc offering protection anyway, no matter how high the cells are or remain in testing? I think that was suggested as one reason why Mr S doesn't feel the need to retest often once you've been tested once. But I guess this might be once you are pregnant and seem to be staying pregnant.

Kittens that is a wonderful analogy about your childhood holidays in San Diego. What a beautiful image, if of course turbulent and sad. i am glad you are talking it through with a counsellor.

Funny enough I kept on thinking about a similar type memory I could relate this experience to some months ago. When we were aged around 8 and 9 Pebbles and I were stuck in a lift in Spain that was meant to be going up to her 13th floor apartment. At around the 5th floor the lift stopped, started shaking violently then plunged about 3 floors really sharply. We were holding hands and screaming and crying, as one tends to in violently plunging lift. The next minute it started back up again and was fine! We were still grabbing each other's hands but started laughing hysterically.Then it plunged again!! This went on for a good long time, plunging, shaking violently, rising again, it was bloody terrifying. And all the while we were standing in the middle, two little girls, screaming, crying and then laughing hysterically again every time it started to rise normally before it plunged all over again.

Pebbles I know we have spoken but I really, really hope you're wrong about the tests :(

With a terrible gear change (as often happens on here) I had a good scan today and a good appointment with Mr S. He was really lovely and it was really nice to see him after all these weeks. Baby is looking on the chubby size, already 4.6lbs with a large abdominal circumference so that's something that needs to be watched. My GTT test was clear though so it might just be a big baby. DH and I were both big babies. Oh and it's breech. So I am due back in 4 weeks to reassess the situation, as I realise these things can change. But in the light of everything else that can and does happen here I know it is good news. I thought I would let you all know anyway, I hope it's not upsetting to hear ok news when there is much crapness happening to some of you and I hope that positives can be taken from it for everyone.

duggs I'm really interested in your latest experience. I've tried to go back and piece together where you are at, but thought better just to ask if that's ok. Im particular interested in the test about intripilids v IVIG. What clinic is it that does that? And did you say they are using chicago for tests?

As you know I'm with ARGC and my latest NK result (back from Chicago) is 23% so they want me in for my 5th IVIG treatment. I was starting to have serious doubts about its effectiveness and was thinking of insisting on intralipids instead, but what you recently said is making me think otherwise again.

So does your clinic think IVIG is better then?

Thanks in advance for the advise.

Hi dunnit well if i remember correctly u had ivig and clexane no steroids? Is that correct (on iPhone can't scroll). The ivig was around first from dr beer but intrallipids came along. However the chicago tests do indicate if u would respond or not. It doesn't look like I would have (backed up by fact I had 2 rounds last month). The clinic is Dr gorgy assisted fertility and gynaecological clinic. I think others do that too? Does this help or do u want more detail if so pm me maybe I can help with more specifics ? X

pebbles yes I'll go back for consultation once all results r in. Can I ask what stage were the embryos they put back? I'm sorry to hear u r going thru this hopefully fmu shows a more concentrated result x

Tested again this morning and not even hint of a line so chemical for me. Not really sure what to do now, feel a bit lost and spent all last night crying. Not sure if is worth going back to super ov or if i am just wasting my time. .... I am beggining to think I really just need to face the fact that I am not going to have a baby and get on with my life! Have never felt so hopeless in my life.

Duggs they were put back at day 3, they cultured the others on that weren't used and a couple of those went to blastocyst so think the only thing stopping me having a baby is my killer womb.

Sue am hoping you still had a lovely strong line this morning and are ok.

Hope you are doing ok to Ari.

Been massively busy, but have been lurking. Pebbles I feel desperately sorry for you and send you a massive virtual hug. Although you feel like giving up right now, hopefully in time you'll be able to get your fight back. Keep the hope alive.

Sue praying that line is still there for you this morning . Sue do you mind reminding me why you had your hysteroscopy? I am wondering whether it is worth me having one in a bid to increase my womb lining in case my scarring is causing issues? My AF has definitely been a lot lighter since I started having ERPCs.

Ari so sorry about the chemical

AF showed her ugly head this am, but not too surprised as I need to be able to thicken my womb lining before any little bean going to stick. Starting SO this month.

Hello to everyone else and welcome Gransol. Enjoy the sunshine.

pebbles I am so sorry it has turned into a chemical. Don't give up hope as it could have been bad chromosomes that caused it so next time might work. At least by being on super ov it increases your chances. Have you got any free ivf cycles left?

belly I had the hysteroscopy as it was on the nhs so free and thought it was another investigation to tick off. I had also googled and found there was evidence that it can make it easier for the egg to implant or make you more fertile so I was desperate to try anything! I got my bfp 2 weeks later so who knows if it helped? I didn't have any suspicion of scarring etc but was told that you can have an abnormal shaped womb which might not be picked up on other scans and can interfere with implantation. It can even be the case if you have had previous births as they might have been lucky.
Did another test yesterday and the line is now darker than the control line so it seems to be progressing at the moment. My acupuncturist said my pulses were a lot stronger this time but I know I have a long way to go! Feel a bit bad with my news with all the chemicals on here but I am still sceptical mine will work out.

pebbles I know how u feel. A mc or chemical is bad enough on a natural cycle. After ivf it is an unbelievable feeling of loss and despair. I will pm you. X

Pebbles I'm so sorry.

thinking of you pebbles

I've been following the thread and just wanted to say to Free and Charlie how pleased I am about the positive scans - also Sue, a great start and a whispered congratulations to you.

I am so sorry though to read Duggs and Pebbles about you - the overwhelming disappointment and loss after a miscarriage is so awful and I cannot imagine it after IVF. A big hug to you both. Also to Ari.

I have got friends coming over later who, as yet, have had no success after a few years of trying for a baby and this time feel apprehensive for them as I know only too well that feeling of being faced with pregnancy news or a newborn. I do keep saying to various friends not to come if they don't want to and of course I'll understand - such a minefield for everyone.

Take care all xx

Oh shit, pebbles, I'm so sorry. You must be feeling utterly despondent. I don't know what else to say as platitudes won't help, just sending you a big hug.

belly, I'm having a hysteroscopy on Wedesday. I'd had a Hycosy scan on Mr S's recommendation which showed possible scarring. When I had an appointment with the NHS Fertility clinic the consultant said that if I could show her documentation that mentions the scarring she would be able to refer me for a hysteroscopy. I had the hycosy (I just did a freudian slip and typed hycosty, it was £450!) based on my light periods and the fact that I'd had 7 surgical procedures - ERPCs & TOPs.

Not more bad news?! Pebbles I'm so sorry. Hugs.

Comedy - personally I feel that merely showing an awareness, empathy and consideration of others' feelings is all that's necessary to make said other person feel comfortable with you no matter how low they feel or how stark the comparisons between your position and theirs at the moment in question. It's those who know but thunder ahead without any thought that upset me.

Sorry for not catching up fully- is difficult on phone so waves to all

morning ladies. I have some "self researched" information based on a second lot of results that may be interesting to us ladies who are not having much luck with the steroids treatment alone.

Apologies if I get anything wrong (pls do correct me) and if you already know. I think it may help Pebbles and Choccy and Ari perhaps too...

The Americans seem to have health care which is why they go straight to the full assay of immunological testing. They then get re tested after each treatment type to see which works best for them before they go ahead with any ttc natural or assisted. (seems sensible .. but takes time and money) not an issue if your medical insurance is paying and time better spent on investigative treatment. All the literature states the experimental natural of immunology treatment and how each result is dependent on another result to provide the entire picture - which is how treatment suggestions are made. How we respond to each treatment is then assessed.

Of course Dr S is doing his best to get this treatment out to "the masses" (85%) are successful with steroids..at a low a cost as possible and that is fantastic...however, if we are not responding then I would say it is time for deeper investigations ( however not cheap).

What my latest results show is that I am within the normal ranges for all my NK cells.. higher end for 2 areas CD3 and CD56 but still within range.

I would think the 7 months on steroids, 2 intrallipids and 40mg for a month or so before paints this picture but it has re boosted my faith in thesey leve treatments. It shows I responded to the intrallipids at one level but not at all at another level, but I responded very well to IVIG with a 50% reduction. (Not suprising really as it seems to be more impactful but more expensive and controversial). I don't know if I even need it to be honest will need to see what Dr G advises.

The area not covered by dr s that arrived yesterday in the post is my antibody level to DH's DNA. I seem to have a very very low antibody blocking level to him B cells (don't ask me any more I don't understand the biological detail as it is complicated) so DH is annoyed I am trying to self diagnose... however, it seems when the fetus arrives, I have some blocking anti bodies to protect the fetus but some are missing..(hence the 12 wk baby I had who would have maybe gone full term if not trisomy) or other people with DC. It means we have some genetically similar DNA so my body doesn't realise it is obviously a fetus to be protected. LIT.. injection of his white blood cells and another 6 weeks later should give me 6 to 8 mths protection.

Anyway, we are still waiting on the DQ alpha tests .. to get confirmation of the genetic match. Should arrive this week.

I could be jumping the gun totally, but I have been googling away and have dr beer's book and this seems to be what my results indicate. Of course Dr G will advise proper treatment plan.

I am v glad that it isn't jsut that the steroids and intrallipids just didn't work for me as it made no sense.

I hope you followed my ramblings, I think v interesting development and seemling not outrageous to treat. I presumed that any one who had a dc or later pregnancy wouldn't have this issue but is not a black and white issue is immunological and based on antibodies produced and perhaps there were more earlier on before the many MC's. I shall be asking dr G this when I see him.

Probably doesn't make some of you feel any better as it seems like a minefield but actually the test I am talking about is called a LAD - leukocyte Antibody Detection test and costs £220 and DQ alpha test is another £220.. that is the problem it is hard to pick and chose the tests you either have one specific or have them all.

Anyway, enough from me.. the americans have a better shot as they will get re tested as they continue on their treatment plans and monitored and know exactly what is happening in there. Bless us and our peeing on a stick to see strength of lines and top level in the dark testing... great when it works first or second time... but deep into it.. it is scary and confusing.

pebbles hope you are feeling a bit better today.
big hug x

www.rialab.com/miscarriages_prevented.php

Interesting duggs. Can you get LIT done here or do you have to go to Greece for that one?

You can get it here. You can't in the US they all trot off to Mexico x

Just a quickie from me but I've read about people doing LIT here. Duggs well done on the continued research, that's how we have all got here and it's great to continue learning as much as pos to try to address everything - helps everyone else too.

Hope the date with friends went ok Comedy. And how is baby-dom coming on?! Hope all is well and you are managing to get a bit of sleep.

Am 'busy' having a nice London weekend with DH and off out again to see some sunshine. Felt like absolute shit when I got home yesterday - way too much walking - so must remember to take it easy!

Love to all xx

duggs I have a very good feeling that you are on the way to finding what is happening to you. Thanks for sharing all the info and I would be interested to hear if LIT is used for couples who already have one child plus if the hidden c test would be a waste of time. We will get there ladies! Keep the faith as Jon Bon jovi used to say!

That's so interesting, thanks for sharing Duggs, and trailblazing. So how much did it come to in total - appointments plus tests, did you say about £2.5k?

Pebbles so sorry for your news, sending huge virtual hug.

Choccy very well explained i think, that's how i feel. x

Pebbles so sorry about the chemical. It must be so much worse after IVF too.

Duggs wow, your research is really incredibly brilliant. Dr S or one of the others should seriously consider employing you as a researcher. Or maybe you could sell your findings to them!

Free - no I don't have a DC!

Sorry Charlie - not sure where I got that idea from after all this time of 'knowing' you. Oh good, my due date buddy is a first timer too :)

Although when I saw Mr S last week we discussed the fact that if the baby stays breech I might be looking at a C Section around week 38/39. Will see how it goes - another scan on 22nd June at 35 weeks.

Here's a list update, it's been 5 days since the last one! Feel free to add/edit.

Monday 28th May

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (CS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 ? 39 weeks (CS) 14/5/12 7 lbs.
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy born at 38+6 16/5/12

BFP 3rd Trimester

Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. DC#1 31+6 Next appt/scan, 22nd June EDD 24/07/12 by LMP, 22/07 by Nuchal
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 31+6 EDD 24/07/12
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 28+3
coleyoz - V High NKC. DC#2, BFP cycle2, 28+0

2nd Trimester

FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 23+5
Mercator - V High NKC, TTC#2. 23+4
Hopefulfor2nd - High NKC - TTC#2. - 22+4
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 22+4
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 18+1

1st Trimester
HelterSkelter (IVF and immune therapy) 8+0

To be added to shortly...

TTC ? ASSISTANCE - SO/IUI/IVF
Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
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
Abney (44), SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),
eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of 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
London - High NKC, April - mc on treatment.
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, have decided to only take Pred from BFP
picolina - V High NKC MC on treatment (taking a break on holiday)
Holldoll - High NKC - Pred, Cyclogest & aspirin. MC March 2012 on treatment. Pred started at BFP.
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
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Carebear1 - V high NKC

Current status?

BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 37+3 MIA for a while! Must be due around 1st June

Cherrycheeks - V high NKC, TTC#2
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

Thinking of Snoopy and hoping for a full recovery to health soon.

Morning ladies, not been on for a couple of days and just catching up with everyone's news. pebbles I'm so, so sorry to hear you've been hit with a chemical too, especially bad after having gone through IVF. So very sorry :( hugs to you.

duggs Really interesting information, thanks so much for sharing it with us. I have long wondered about a possibile incompatibility with DP (my DD is with a previous partner) and think it's definitely worth getting checked out. I've emailed Dr Gorgy's office to ask about getting an appointment with him - now all I have to do is persuade DP to get him to come along for testing. Oh, and clear it with both of our healthcare providers. Minor hurdles :( But I definitely think it's worth getting tested, and I'd be really interested to hear how your DQ alpha results come back too, if you don't mind? And of course what Dr G says to all your results - when do you have to go back to see him?

Welcome to gransol and great blog helter.

/waves to everyone, hope you're all doing well.

Hello all, I?ve been lurking but not had much time to post.

So much sad news at the moment. Pebbles and Ari ? just gutted for you both. And Kittens ? Sorry your results are so disappointing. When is your follow up with Mr S to find out what his take on the whole thing is?

Duggs ? I?m fascinated by all your research and will be so interested to see what treatment plan you eventually get put on.

Free ? Your baby may well turn in plenty of time, but if you want to give him/her a helping hand, the Spinning Babies site has some exercises you can do to flip a breech baby.

Welcome to Gransol!

Dp went back to work today so this is the real test of how I can get on with two. I managed to get us all out of the house by just after 8 this morning to take DS to nursery. I?m on an enforced post-natal exercise routine now, as our car has packed in and the nursery run was an hour round trip on foot (nursery is close to my work). I just hope I can manage to time feeds etc OK for pick-up later on.

Some friends on mine have had a falling out. One friend had a hysterectomy a couple of years ago following cervical cancer. Obviously this was devastating for her as her and her dh were talking about starting a family. Other friend bounds in to café and announces her pregnancy without a thought for first friend?s feelings. Some people really don?t get it do they.

Waves to everyone else.

Afternon all.

Pebbles I'm sorry to hear about the chem preg.

Coconut how are you managing "flying solo"? How awful for your poor friend who had the hysterectomy. Some people really are thoughtless.

AF arrived for me this morning, so that meants IUI#2 didn't work. I'm about to call the clinic to see if we can start IVF.