TTC or pregnancy on prednisolone or similar part 9

[sarahs999]

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: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 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

Bonjour Accidental and welcome to the thread. So sorry to hear about your losses but well done you for making that tough decision to keep going and to try the pred. You won't know unless you try and there have been some very good success rates - considering those of us who have found this treatment have had such struggles and aren't what you call 'normal' when it comes to getting pregnant and keeping babies. Fire away if you have any questions and we can be your virtual support. Some of us even have A level practically fluent French :)

Yes kittens - just think that this time next year when you go through the horrible anniversary and also your birthday you will be doing so with a little pred baby sat on your lap.

kittens I'm so sorry you're going through this, but you know what they say .. that which doesn't kill us makes us stronger. By that measure, you should be winning Olympic medals for your strength by now! Don't worry about your stress affecting wee baby ... I had almost 9 months of solid stress when I was pregnant with DD (due to a git of an ex-husband) and it doesn't seem to have done her any harm. They do say stress can make for an overactive baby, that's all, and I would say perhaps that's true with my DD - like free said about Sebastian, I think, she thumbed her nose at the concept of sleeping during the day, never napped for more than 30 mins at a time when she was small (used to drive me nuts!) but apart from that I was told I had a 'very active baby'. Well no sht Sherlock, as if I didn't know that! Love to hear your progress though kittens*, gives the rest of us still trying hope!

accidental Welcome to the thread, it's a bit quieter than it used to be now but that may well be because the pred treatment has been so successful for so many ladies, they're all snuggled up with their precious pred babies now! So very sorry for your losses, and absolutely understand the terror in starting again, but there are several of us on here who can help you through the terror - we all know it very well!

/waves to everyone, hope you're all keeping warm. duggs Are you detoxed now? choccy Do you have a date for starting your IVF journey?

accidental welcome to the thread, sorry you find yourself in this situation though. The ladies on here offer lots of support when you need it

Kittens sorry you are having such a rough time but just think this time next year your little one will be here.

duggs jealous of the being somewhere warm not sure I could cope without any emergency rations though.

waves to everyone else

Hello ladies and welcome accidental ! I'm in Singapore now waiting for DH to fly in. Is raining so am watching movies and having room service. Had good relaxing, interesting time in Bali. Even went to a medicine man of of the local Balinese girls I befriended. Amongst the pigs and chickens he said my uterus was tipped to the left. Not a huge issue but can make things slower and not good in eastern medicine terms. He moved it with his hands - massaging - ( while whole village watched my fat wobbling about and mouths were wide open). Anyway he said it was now 100 degrees and prefers 180 but I've been reading about this area out of passive interest. I'm drug free now and have been since October so feeling like my old self again. Immunology hasn't been my solution so far but I have made some lovely web friends on here so i am still around. Expecting IVF in spring time again ( a year on since last one).. So really making most of this time. Waves to everyone - sue and choccy and pebbles and ari how r u?

Merci tout la monde. I feel like I'm home.

The TTC hasn't started yet, husband has a broken leg which has scuppered plans. It does give me a chance to polish up on french miscarriage and conception terminology though

Duggs I hope the balinese medicine man has done some good - sounds very interesting!

I am finding it really hard at the moment, can't stop crying today as everywhere I look are reminders of what I have lost. Still waiting for my periods to come back so am in total limbo. I would only have had 5 weeks to go and I was desperately hoping to be at least trying again by the time my due date was here but that sadly doesn't look the case. I really dont know if I should give up as I seem to be fated never to have another child. I feel like someone is trying to tell me to give up and I dont know if I can be strong enough to keep carrying on.

Sue just wanted to say that I feel for you. I can imagine how hard things must be with constant reminders everywhere all the time. I so hope that AF turns up before your due date so that at least you can then be in control of your next move. Will be thinking of you over the coming weeks and hope you find the strength to make the right decision for you and your family.

My mc happened naturally in the end, all pretty painful but so much better than an erpc. Bit awkward when I bumped into someone i knew at the EPU when i went for a follow up scan. We haven't decided on our next move but my sister told me she had secretly been to see the GP about being a surrogate for us. She is 43 and has high blood pressure so the answers was no, but I totally lost the plot to think she would consider doing something as amazing as that for us, especially as she doesn't have children herself. I always knew she was a special person but DH and I were/still are blown away by her kindness.

I hope all those who have had successful journeys this year have a wonderful first Christmas with their little ones

Happy Christmas to those of us still trying to fulfill our dreams. May 2013 be our year

And to those with growing bumps, enjoy your excuse of a growing tummy to indulge over Xmas

HAPPY CHRISTMAS x

Lovely message Belly, and SUe sorry you're finding it so hard at the moment. Totally understandable. And hi everyone else - glad you found the thread Rainbow. I fell off the thread and couldn't find it for ages!

Things still going well here. I'm 29 weeks and looking properly pregnant. Like Kittens I still find it astonishing when I pass a mirror and think wow, that's me. After five miscarriages in a row it's only now that I'm feeling like I can relax a little bit.

Section is booked for Feb 21. Weird to know the birthdate in advance!

Sue I hope AF does turn up soon so you can make a decision about how to proceed now. It must be extraordinarily difficult to even contemplate starting all over again and it's something only you and your DH can decide on. I hope whatever happens that 2013 is good year for you and your family.
Belly What a lovely message, happy Christmas to you too and I hope 2013 is the year for you to have a bump/baby I am glad you managed to avoid an ERPC.
Sarah Glad to hear you are well - it must feel very odd to have a birthday for your baby so far in advance - good for planning though!
All is well with me apart from usual pregnancy symptoms - I seem to be going for the full house of pregnancy complaints this time round. Will be 31 weeks on Friday Really must start getting baby stuff organised after Christmas!
I can't put it as eloquently as belly did so im not going to try - I'll just say I wish you all a very happy Christmas and a happy, healthy and prosperous new year

sue Just wanted to say I'm so sorry you're feeling so down right now, it's completely understandable and I really feel for you. I hope AF hurries up so you can at least get that hurdle out of the way, and then decide what you want to do next. Big hugs to you and to your DH, be gentle on yourself.

/waves to everyone and a Merry Christmas to all!

I have an appointment, with an English speaking gynaecologist on the 27th of December.

I'm really keen to try Prednisolone but I'm unsure whether they'll give it to me. I've not had a biopsy of my womb, it was discussed with my last gynea but she wasn't keen as my womb had just been perforated with the last ERPC. She didn't want to risk another perforation.

Can anyone advise me what the clinical indications are for prescribing Prednisolone? Has anyone been prescribed without evidence of high killer cells or by the blood test only?

I know it all might be different in France anyway but all advice is welcome.

Hello pred thread ladies and merry Christmas to you all. I am really hoping that 2013 brings lots of good news and joy for those still struggling with ttc and those who have had such sad losses and tough times this year.

Hi to accidental, good luck with your app with the gynae. I am one who was prescribed prednisolone without being tested. My NHS gynae decided to try me on a mix of pred, fragmin injection, aspirin and high dose folic acid from pre ovulation induction (and IUI). This was after my 3rd mc. Fingers crossed its all worked for me (I am 27.5 weeks now, still v anxious but easing into it!).

X

Thanks Jemimapuddleduk that's really good to know. I'm preparing my case! What is a Fragmin injection?

Hi accidental it's a blood thinner. Good luck for the 27th x

Hi accidental, you know you don't need to have a womb biopsy. The consultant whom most of us have been under does a blood test for NK Cells. Good luck for 27th.

Sue, I'm sorry you're feeling miserable. It's very understandable. Have you seen your GP an asked if they can investigate why your periods are taking to long to get back to normal? There may be a reason.

Hello to everyone else. I hope you all have a lovely Christmas and wish you all the best for the coming year. BFPs and babies all round please!

Christmas is looking pretty grim for us. Lots of painful memories and feelings about last Christmas and my lovely grandma is getting weaker by the day. It's like an action replay . Just trying to focus on the fact that I have something amazing to look forward to at Easter time (I hope!).

Hello everyone, sorry to have been absent for so long. Welcome Accidental and good luck with your appt.

Sue, this must be an extraordinarily difficult time but hopefully you're period will arrive soon and you can then go about making some decisions with you oh!

I wish all you lovely ladies a very Happy Christmas and I hope the arrival of a New Year brings with it some positive outcomes for everyone on here. I know some of us have been extremely lucky this year but hopefully for those that haven't been successful this year that 2013 is a lucky year for you.

This board has some amazing ladies on it with a wealth of information and I only wish I had found it earlier. I remember looking into the miscarriage association and found little solace or knowledge there and only wonder if there would be a way to use the information we have gleaned and shared to more effectively help others in the same boat who may not have found this information. Free are you still planning your documentary?

Rather interestingly when I went back on to the MA website this week they only have input from Lesley Regan and none of the specialists we have all come across so I do wonder how much or little information is going out to a broader audience. Possibly due to the scepticism of this line of treatment by the general medical profession.

Anyway would love to do more to get this info out.

Love to you and yours this Xmas. snoopy if you ever check I hope all is well with you and I hope your op has been a success.

kittens sorry to hear about your grandma, Xmas is always a difficult time I think when you've lost someone but hopefully that will change when your lo arrives! I lost my father a long time ago on the 20th and sadly my mil died on the same day the week after my lo was born 4 years ago, but time does heal and now I find myself looking forward to Christmas with the lo's! I hope you manage to have a good one in the circumstances.

SO sorry you are having another awful Christmas Kittens. I am sure next year and from then on will be much better for you.

That's a really interesting point Merc about the MA not recommending our treatment. Yes I am still working on the doc. I have completed all my filming of the diary and just need to do one or more case studies now and add in another couple of experts. I will add that point to my list and get my arse in gear in Jan. Hope you're well! I will be calling out to see if any of you want to join Sarah in having been interviewed for the doc!

Hope everyone has good Christmasses in their circumstances xxxxx

kittens So sorry to hear about your Grandma's failing health. Christmas seems such an emotion-laden time of year these days, and not generally for the good. I hope your Christmas goes as well as can be, and allow yourself some happiness at the thought of the coming of your much-awaited bundle of joy.

Hey merry Christmas from
Sydney folks! Is almost over now down under here's hoping dr s is the solution for most ... but for those who he isn't may they discover this quickly and move on and not be lured into a false sense of super ovulation holiday funding !! If it isn't happening within 6 move on...look deeper ! X

Hello, happy Christmas and (most importantly) wishing everyone a successful 2013.
Have just rediscovered thread after it fell off my TIO list.

Loving your new nickname iggi

Ta muchly Ari. Christmas names are hard! (ArianRhodStewartSingsAnotherBloodyChristmasSong?)

Well, that didn't go well!
I can't find any specialists in my area of France specialising in recurrent miscarriage. There is no such thing as continuing professional development in medicine in France so if someone is up to date it's through self motivation. So I went to see someone who was recommended by an English speaking GP.

Getting out is stressful anyway as I have a son with ADHD and ASD and a husband on crutches after breaking his leg. They both came with me too, probably not be best of ideas.

The specialist was very dismissive of the idea of Prednisolone. He said he didn't know of any labs that did high killer cells testing (all labs are independent from hospitals in France) he would do some research but wasn't hopeful.

He said he didn't know anyone in France who would consider giving Prednisolone to me. He wants me to send him research papers that proves Prednisolone works as he hasn't seen any.
He said there was a clinic in Paris that gives IVF if you've had 6 miscarriages but they probably wouldn't accept me anyway, considering my age (39). He looked at me with his eyebrows raised as if to make a point about how old I was.

I'm not surprised by his reaction but I am surprised at how disappointed I am. I feel gutted, probably because we are ready to TTC. Doctors love to give out medicines here, I just need to find one willing to let me try.

Any suggestions out there, can anyone recommend someone in London privately? Or has anyone got any research papers I can send this guy?

Please don't be too disappointed, there are more helpful doctors out there! I don't think I would bother trying to convince that one. I was almost 41 when I sought trea(ment for rmc, and local specialists just said aspirin and maybe too old. I saw Hassan Shehata in Harley Street - I know some others on mumsnet have seen a Dr Gorgy - and although I will never know if it was the steroid treatment that helped, my 5th attempt at pg after dc1 worked. It is offputting to have to travel far for help - for me it was just Scotland to London, but the distance put me off at first.