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TTC or pregnancy on prednisolone or similar part 9

(999 Posts)
sarahs999 Fri 31-Aug-12 06:24:33

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:

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2 here

Part 1 here

roseandroli Thu 14-Feb-13 10:19:35

Oh, sorry, here it is properly:

roseandroli Thu 14-Feb-13 10:18:59

Hi everyone, just started the new thread--I hope it works! Here is the link:

Please come on over and post something so I know I didn't mess it up!

cartoontrickster Thu 14-Feb-13 09:51:49

thanks! I'm still not completely relaxed yet though. even though Mr s says we're safe now.
lawlee are u on one cyclogest? I'd do it at night. yay for the faint line!! could u get a digi to check. I think u can get own brand ones not sure how good they are though! I'm sure all the poking around won't have done any harm I wouldn't worry. what time were u there? maybe we saw each other?
I was wondering who would start a new thread?

Lawlee Thu 14-Feb-13 08:14:14

Eeep we only have a few posts left on this thread! Anyone know how to start a new one? Am a bit of a newb at online forums!

Lawlee Thu 14-Feb-13 08:10:35

Hi all,
Sorry I was a bit AWOL yesterday, bit of a mad day with my scan and all.

Cartoon that's such great news about your scan! I'm so pleased for you!

Babybuttons thank you so much for popping in, stories like that are the inspiration I think a lot of us need to keep going through it all. Congratulations on your success!

Rose I agree it's scandalous, and if you did write a book I think I would be one of the first in line to buy it lol!

Accidental I'm so sorry I can't help more, I'm sure it must be such a worry. Perhaps you could email the clinic and explain your worries and see if they can point you at any research or any info that might help?

Mollie, Rose, BellyD Cartoon and everyone that's been so supportive with my poas obsession, thank you. I can report today that I still have a line!! Well sort of. Superdrug test says very faint BFP but ic says BFN. I think I'm going to assume its a BFP and up my pred dose just in case, but not get my hopes up as plenty of times the tests have just gone back to negative again in the past, and it is very very faint. I do have one concern however. I had my structural internal scan yesterday and they were having a bit of trouble getting sight of all my various organs so it ended up being quite long and at times quite painful (which they haven't been for me before). I guess if I am upduffed it's so early the scan couldn't show it, but do you think it will have done any harm? TMI but they were really poking around hard in there....
Also the scan showed I might have a bit of adenomyosis, has anyone else been diagnosed with that? Not sure what it really means but they didn't seem too worried.

Last question for now I promise, do I use the cyclogest right away or only at night? Xx

mollieboo Wed 13-Feb-13 22:24:14

Hi cartoon that's great news about your scan, you must be so pleased and relieved.

cartoontrickster Wed 13-Feb-13 22:10:04

hi guys. had my scan all good 8+6. the area of bleed I had before was gone!
rose they mentioned to me about staying under his care too I can't believe the price of it!

Arianrhod Wed 13-Feb-13 20:12:25

bellyd On the FF forum there are ladies who have had/are having gcsf treatment, I'd pop on there if I were you. HTH!

TheAccidentalExhibitionist Wed 13-Feb-13 19:39:03

Aghrr, sorry to be needy, does anyone have a positive story about Hydroxy alone? I've not been put on steroids and I'm starting to think Hydroxy just won't cut it against the gold standard Pred.
I've looked through the threads and can only see Hydroxy used in conjunction with Pred, not alone.

mollieboo Wed 13-Feb-13 18:59:35

Hi bellyd, hope you don't mind me asking, how many mcs have you had on treatment and were you on pred? I've had two mcs since being under Mr S and am getting worried. Hope it doesn't come to ivf because of the cost but he did mention that it may help one day. Do you have a child already? Sorry to bombard you with questions x

BellyD Wed 13-Feb-13 18:31:52

Mollie just checking in to say I hope you are getting on ok.

Lawlee fingers crossed that it wasn't just an evap line.

We are thinking of having ivf with cgh as Duggs did a while back. I feel sick about the cost but just can't keep miscarrying and not knowing whether it is me or my eggs causing the problem. Won't be until May but I will post more details tomorrow as Dr Ndukwe mentioned a newish treatment he us thinking of using, gcsf injections? Anyone heard of them?

Sue thinking of you as always.

Waves to everyone x

mollieboo Wed 13-Feb-13 17:04:53

babybuttons thank you so much for sharing your story. Congratulations on the birth of your son. I seem to be so complicated and am also still on the journey but am hopeful of getting my family that I dream of. Its lovely to know there are so many positive stories by ladies on the same treatment. I agree with you and rose, most doctors I speak to have no interest in my diagnosis or treatment plan. I hope in the near future the Nhs will provide testing and treatment as part of recurrent miscarriage investigations. rose there are a few writers and doc makers on here, I would love to watch or read anything produced about the subject by anyone on here.

rose I'm sure free had her baby delivered by Mr S. I would love him to deliver my baby one day but distance and cost will prevent it. It would be great though wouldn't it?

lawlee try not to stress. I know its really hard though, I'll be the same in a couple of months, I'll be a complete poas addict, but we have to be really because of the steroids. Bet you can't wait till the morning so you can test again!

roseandroli Wed 13-Feb-13 16:01:01

babybuttons thank you ever so much for sharing your story. It's really an inspiration for all of us who are on this journey, which sometimes feels neverending. But to know that after all your struggles you were able to succeed on the treatment is really so reassuring. I think it's quite scandalous how few people know about nk cells. I'm still early on in the journey, but I'm convinced I would have never come this far if it hadn't been for the steroid treatment. If I am fortunate enough to have my baby this time, I am certainly going to write a book about the whole thing. Anyway, thank you again for your story, and congratulations on your little boy.

Good luck with the testing, lawlee--and I wouldn't worry too much if there is a gap of a few days, just in case you stop the pred and then get a bfp further down the line--Louise said that happens sometimes and not to worry about it.

Has anyone actually had their babies delivered by Dr. Shehata? He brought it up at our appointment. There is no way we could afford that, but wondering if anyone has done it.

Babybuttons Wed 13-Feb-13 15:33:38

Hello ladies. I found this thread a few days ago and didn't want to read and run. Have read with real interest some of the stories on here and feel I must join and tell my story to give you lovely ladies hope and inspiration. I have had 4 mcs over the past 4 years and after finding nothing conclusive in the standard Nhs tests had more or less given up all hope of being a mummy. I was looked after by a wonderful lady at the recurrent miscarriage clinic at st James hospital in Leeds, who eventually referred me to professor siobhan quenby in Coventry for nkc testing in September 2011. I was diagnosed with high nkcs and was prescribed pred at bfp on my 5th pregnancy. Prof quenby promised me she would get me there but I didn't believe her I had given up all hope at the age of 42. To cut a long story short, I'm sitting here today looking at my gorgeous 3 week old little boy still almost not believing he's real. It's been a tough journey and I can relate so closely to the feelings and emotions I have read about on this thread. I just wanted to share this with you as if I can give hope and inspiration to just one person who reads this then I will be happy. I have spoken to many people about nkcs and what I have been through, and am amazed at how little information seems to be available out there so am on a mission to get the message out there. There is a lot of cynicism too about steroid treatment but I'm a big believer that it is what got me there in the end. Good luck to those of you going through this journey right now and never give up hope x

Lawlee Wed 13-Feb-13 10:55:44

Thanks Mollie that's a good tip, I've not tried the Superdrug ones before, worth a go! I really think its an evap though, second test I've done and yea ok it wasn't fmu, but no sign or hint of anything. Will be checking again tomorrow and Friday to be sure of course but not getting any hopes up! Will for sure try some Superdrug ones too.
Hope you are doing ok, half way through the week now, not long to the weekend! Xx

mollieboo Wed 13-Feb-13 10:12:11

Hi lawlee, when I got my bfp I used frer and superdrug tests. Superdrug tests are £5 for two in a pack or £7 for two packs and they're just as sensitive as frer. Not sure if you could buy a pack of them? Or do an ic tomorrow and if a line comes up a bit more quickly you could do the frer? Good luck, hope this is it!

Lawlee Wed 13-Feb-13 08:58:15

Morning. Thanks Rose, that's exactly what I did so that has put my mind at rest!

Good luck today Cartoon for your scan, although I'm sure you won't need it!

Ok question (and sorry that I keep peppering you all with them!) So I tested this morning with one of the 10miu ic's and BFN, but as I am not at work today I noticed an incredibly faint line has come up outside the test time that you can only see by daylight. I am 99.99% sure it's an evap, but I only have one frer left and can't afford to keep buying them for negatives lol! Today is last day of pred, so what would you do? Should I use an ic tomorrow and the frer at 12 dpo on Friday or even later, and risk a wider gap in the meds or do i use the frer tomorrow and take the risk it doesn't pick it up yet? The frer I did yesterday was whiter than white. Any thoughts appreciated! Xx

roseandroli Wed 13-Feb-13 08:15:13

Mollie just wanted to say hello and so glad you are on the mend. Enjoy your weekend with DH.

Lawlee I always get 2 days of positive opks and it can be a bit confusing. As far as I know, the positive opk means you are about to ovulate, so I usually count ovulation day as 48 hours after getting the first opk. If that makes any sense. And that's when I started taking the pred.

Lawlee Tue 12-Feb-13 19:03:02

Hi mollie just a flying post on the trek home to say I'm so glad you are feeling a bit better physically and psychologically and feeling you are able to look to the future. Hope you have a fab time with your DH!
Hi Ari and everyone else, hope you are having a good week x

mollieboo Tue 12-Feb-13 10:40:46

Hi everyone

lawlee hope you get your bfp, the waiting is tortuous isn't it.

cartoon good luck for tomorrow. I know how nervewracking scans are but I'm sure all is well.

rose what a huge relief to be home with dh and fab news that all was well at your scan.

All ok with me. Did the medical management on Sunday at home. Was prepared for contractions, had breathing exercises and hot water bottle ready. The nurse said take the painkillers they had given me as soon as I felt anything so I took them at the first sign of twinges after 30 minutes. They were so strong that I was away with the fairies and couldn't feel a thing! I thought nothing was happening but it was and the worst was over within two hours. No pain at all so I'm really glad I chose that way now even though I was dreading it. Just like a normal mc now. Psychologically its like a huge weight has been lifted from me, I'm out of my pj's, seeing family and friends and looking to the future after weeks of uncertainty and depression. Thanks again for all of your support. Onwards and upwards on this crazy rollercoaster. I'm off to get p*ssed on the weekend with my wonderful dh! Of course I'm terrified that it'll happen again but I just feel desperate to try again now.


Arianrhod Tue 12-Feb-13 09:38:25

abney Just curious ... did you not have intralipids before this pg then? I confess I've stopped taking both the hydroxy and pred at the moment, just taking the Wobenzym and hoping that it does the trick. Bearing in mind that I think free was only on hydroxy for 2 weeks when she fell pregnant, so if miracles happen and I get another BFP then I'll restart it then (I know it's supposed to build up in your system, but still).

choccy, you still out there? how you doing?

Mostly lurking myself these days, but reading everyone's posts and wishing everyone the best for speedy BFPs!

/waves to everyone

Lawlee Tue 12-Feb-13 08:51:35

Oops crossed posts Olives! Thanks, it does cheer me up to hear that. I know it's still really early, and I did have those feelings before that made me think it would be positive, but somehow now I feel very not pregnant! We shall see anyway.
Out of interest has anyone else used opk's and had two days of positives before? I'm not entirely sure which day to count as the big O, so my dpo count might be a bit off. I was supposed to be temping this month but didn't quite manage to get my act together! Haha.

Lawlee Tue 12-Feb-13 08:42:54

Thanks Rose and YAY for a fab scan and being home, I am so so pleased for you! Bet your DH was over the moon! Think that kind of cm is pretty normal actually, I've had it a few times while upduffed, and seen people talk about it so hopefully nothing to worry about.
Will keep testing for next few days, but I think I sort of knew this wasn't the month, although it will make only the second cycle of ttc since we started that I haven't got a bfp straight away, if nothing in the next day or two. Taking the tablets for the first time, work and a bunch of other stuff this month have all been pretty stressful, so maybe that will have affected it, and since next month is looking a bit quieter I'm more positive about then anyway. So either way think it will be all good and at least I know what to expect from the pred now (cue purchasing lots of under-eye shadow concealer!) The rollercoaster continues anyway lol. Xx

GreenOlives Tue 12-Feb-13 07:53:20

Lawlee I didn't get a bfp until 12 dpo and it was still very feint then so there's still time! smile

roseandroli Tue 12-Feb-13 07:39:57

Lawlee our posts just crossed--so sorry about your bfn.

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