TTC/Pregnancy on Prednisolone or similar part 8

[Arianrhod]

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 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

pq good to hear from you, hope your family member is doing well, which event is he/she in? How exciting.

I did take my 'products' into hospital to be sent off for karyotyping yesterday but there was a total cock up, they put it in the wrong pot with formaline meaning the karyotyping can't be done. I am gutted. It's the first time I have really really cried. So frustrated my potential answers are lost. And because of such a simple mistake, Absolutely hope & pray noone has to go through the same but I thought it was important knowledge to have on the thread, check the staff know what to do with it before they take it off your hands.

duggs please do pm me the list that would be really helpful, if you could give me an idea of prices that would be great (or not!) too.

free really hope the mastitis, is easing. I remember suffering from it and found warm showers to keep the milk flowing helped a bit.

sue thanks for the acupuncture info. Could you pm me the details or is your guy a bit far out of my way?

Re acupuncture, I have had tons of the stuff as I did a year with the Zhai clinic on Harley street - she is a trained western physician but also does chinese medicine. SO every two weeks I had acupuncture with added electricity (really freaky the first time I had it but grew to quite like it - they add electrodes to the needles. Felt like Frankenstein!). Also drank vats of vile chinese medecine.

As it turns out none of that was actually helping my problem (didn't know I had high NKCs at that point) so naturally when I got pregnant on her program I miscarried as usual. I also had actupuncure for the previous pregnancy. It's really hard to say whether it's any use or not as of course no matter what they did it wasn't going to help my NKC problem, but it's certainly nice and relaxing.

OMG Scooter that is horrific and ALSO EXACTLY WHAT MY HOSPITAL DID WITH MY PRODUCTS. WTF? How can they get away with being so idiotic? So sorry,.

Scooter so sorry to hear what you have been through. It is just horrific, and I'm not suprised you lost it when the hospital screwed up. I am just recovering from my 5th mc so know how rubbish you must be feeling. Glad you have come back to the thread as at least we can all empathise with each other, although wish, for your sake, it had been in happier circumstances.

So glad for everyone who has had good scan news recently and Kittens glad the intralipids went smoothly after all that worry. Am full of admiration for anyone involved in the Olympics (especially newly pregnant people working ridiculously long hours ) I am absolutely obsessed with them, watching and following on Twitter when out and about. They are the best thing to happen to this country for ages and have been a godsend to me over the last couple of weeks whilst recovering. Although Free may not think so prisoner in own home!

Free hope your mastitis is feeling better, I obv have no experience, but have friends who have had it and I know it can make you feel rubbish. You may have to add some antibiotics to that drugs cabinet!

I am starting to feel strong enough to try researching our next move, whilst waiting to find out the results of the ERPC. If it turns out there was nothing wrong with the baby I just don't know what we will do next. Our previous mc was inconclusive and I really feel as though I can't cope with the whole trauma again and still be without a family. Duggs I'd be really interested to know the additional tests you had too, if you don't mind. Would you be able to pm them to me as well as Scooter? I really wonder if DH and my chromosones are too similar. We are going to research all options, trying again, different clinics, surrogacy, adoption before we decide what we do next.

Choccy good to hear from you, but sorry to about DH's job. Glad you are managing to stay strong in the face of adversity.

Mercator glad you have managed to keep your mat leave and reach a semi satisfactory conclusion. Now you can concentrate on the impending arrival and your exciting West Country project.

Hannah hope the spotting has stopped. It is worrying, I know, but fingers crossed it is just the little embie bedding down.

Hi to anyone I've missed.

Really busy here at work, so can't type too much, but big hugs to all of you - both with good and bad news.

Taken my last pred today (having finally weaned off them following last mc). Just now need to lose the moonface and extra weight I've put on!

Thanks for all the suggestions. Although my days are pretty long here I do get quite a lot of down time, so there's lots of sitting with my feet up! I am in a really cold room but I decided to buy a blanket on the second day so that's helped a lot and I'm trying to keep my tummy warm. My lunchtime meals are mostly cold as I am buying ready made salads, quiche etc at M&S in my evening break but I am having a hot meal, also at Westfield, every evening. After Sunday I don't think I'll ever be able to go to Westfield Stratford again! I have to go, just to gt out of here, and to eat something halfway decent as the food here is vile! I don't have much time to prepare anything warm for lunch as I am snatching every last morsel of sleep that I can before setting off for work. I finish here at midnight on Sunday and then have a two day shoot on Monday and Tuesday. Hopefully on Wednesday I will spend a great deal of my day in bed watch DVDs and eating soup! I will send my OH out to buy me the ingredient to make some lovely watercress soup. . Can't wait!

I am trying my hardest to keep my mentalling at bay, although I can't help but be slightly at the fact that I am a lot less tired than I would expect to be under the various circumstances. Every other pregnancy I've had, I've really struggled to get out of bed even after going to bed at a reasonable hour. Is this just because of the pred, do you think? Or just because it's still early days? My main symptoms at the moment are lots of night time weeing and waking up with an insatiable thirst. A few vague wastes of nausea here and there. Not much else.

scooter, I wish I could say that I can't believe they fucked up with sending your tissue off for testing, but I have read of this happening so many times. It makes me so angry. How can they not take the extra care to make sure these things are done properly? I'm really sorry you've had to endure this frustration on top of everything else. No wonder it all got too much for you .

Can anyone tell me how long into the 40mg prednisolone regime the moon face syndrome makes it's appearance? Just want to be prepared!

Sorry about limited personals. Brain capacity a bit limited at the mo!

Afternoon ladies. I am now an infrequent visitor on this thread, but I am still thinking of you all. I hope you all end up with bouncing babies. The number of Pred babies is growing pretty well!

Free do drop me a line if you want to meet up when you move. I hope all is going well with baby Seb. Duggs I feel you are my ttc twin as we are so similar in age and treatment history. I hope you get the ending you want.

I might pop in from time to time in future but I am no longer likely to be a regular on this thread. I doubt I will ever take Pred again, or anything else designed to suppress my immune system, after my dodgy smear experience. Hopefully something will work for me and I can join you on the baby train.

Just popping on while ds2 is parked in front of a DVD and DS1 is asleep. What a mixture of good and bad news.

Kittens - I actually squealed when I read your news! I know you must be shitting yourself but I'm so excited and have everything crossed for you. It's about time you had some good luck. I was also worried about not feeling as tired as I should in those early days but I think it was the pred. I was on the higher dose as I think you are. It's probably just as well you're on the treatment or those kind of hours would be a killer for you at the moment.

Scooter - So sorry to read your sad news and the awful way that they messed up the testing. It's just another punch in the guts while you're down. I really hope further tests show something helpful when you get to them. Big hugs.

Choccy - Sorry to hear about your dh's job.

Gah - ds needs attention. Got to go. Sorry. Hello to everyone else.

Ahh, thank you coconut, I'm touched! Yes, like you say, I think the pred are a bit of a lifesaver at the moment. The amount of times I've been to the loo today is keeping my paranoia at bay!

I also meant to say to choccy that I sorry to hear about your DH's redundancy. Never rains, but pours hey? Sorry you have yet more stress and bad news to deal with.

thanks belly fc things can calm down a bit after this week. Glad you're feeling stronger.

free hope the mastitis is short lived and you're enjoying your little man. Good on you to have got out so soon!

Scooter can't believe they screwed up. Awful enough and brave of you to have done what you did only to have this happen. I know that I agreed to the ERPC on the understanding they'd do a tissue sample but just came back with product of conception. I was absolutely furious so can only imagine what you're feeling right now.

OH cOcoon house ladies. (the old timers will know what that means). I will post the tests and prices when I get home (on a train now - starting to think perhaps my irratic lifestyle may be one of my issues? as I was in Chicago when u asked and I was intermittently on my phone. scooter I know how angry u must be but my last 2 mc were inconclusive because so early but awful u will never know for sure. The interesting thing about my route is the bloody treatment for any hidden infections is 4 weeks of hardcore anti biotics for u and DP and then pro biotics after that. It kills anything so I have read if u don't want to spend ££ on tests just get the anti b prescribed? I figured I'd had 3 Erpc so would be clear but these are HArdcode. choccy and euro and pebbles and ari and am sure a few more old timers I'd like to get together with a bottle or 5 of wine. Enough said. I'm 9 dpo today first ttc month since anti b but think I might have missed the slot as flew to ny but we will see - when can I test ? Realistically tomorrow or is there no point ?? Promise to post in 1 hour the names of tests an prices. They r on here somewhere but eons ago.

ok ladies who asked.
£180 initial dr gorgy consultation. ( much more medical than dr s quite fast and difficult to understand at times but no sugar coating).
Looks at history and where u r. Much broader than dr s who only focuses on Nk cells.

NK assay panel chicago tests also tests to see your response to intrallipids or ivig £750
LAD test leukocyte antibody detection test is £220
TH1:TH2 ratio test £250
DQ alpha match £220
Semen culture £50
Menstrual blood chlamydia, ureplasma, mycoplasma £400
Vaginal swab £75

These are the full range I believe. But your history may only require u to have some of the above.

His website is the fertility-academy.co.uk so has full info !

duggs do you need a GP referral or can you self refer to dr gorgy

Self refer he is pretty quick! Not as good bedside manner as dr s but DH and I would be trotting round with 3 infections and a poor sperm DNA prognosis if we hadn't seen his as dr s advice was just a random mc (despite there being 2 chromosonally good embryos that had implanted). I would also have been knocking back the steroids and intrallipids again even though my nk count had come right down! Thanks to sue i thought id may as well chuck my last credit card limit £ at this before I gave up and moved onto adoption. Someone asked me about my adoption plans. DH and I went to info session. V interesting but since infection results we r going to give it 6 more months ttc from now this being our first ttc mth post anti b no drugs just vitamins so we will see. Hope that helps?

Oh when describing to a friend I likened it to a homebuyers survey and a structural survey. You pretty much get what u pay for In terms of testing info. Cheaper dr s great if nothing much wrong and response to steroids is pretty quick, but if u keep finding issues perhaps u may need to look deeper?

Just a quickie (and I think I have a permanent bedroom in the cocoon house by now!) ... most of those tests you can get via Mr S if you ask, not sure of the pricing as thankfully we're covered by medical insurance at the moment, but we've had SA and DNA fragmentation tests done now, and are getting LAD and DQa bloods done (as well as karyotyping, which has never been done but I think should have been). I just asked Mr S if we could have these done, he wrote out the form for the Doctor's Lab. We probably could have had the TH1:TH2 test done too, but I forgot to ask for that one, doh!

And the menstrual infection screening is 270 euros if you send it to the Serum clinic, but then you have the downside of an international prescription after if anything is found, whereas you pay more for the testing with Dr G but then he will write a prescription, which is then easier to fill I guess.
4 weeks of hardcore anti-bs indeed, on my last day today thank goodness, but I have to say it's not caused us any issues other than OH not being able to drink, not that it stopped him while we were on hols! He's actually postponing his last day of anti-bs to tomorrow, as he wanted to go out drinking with his best friend tonight and I figured there would be no point him taking anti-bs with a skinful of beer! Ho hum ...

hi ive skimmed through there is a lot to read! im of to see shehata tonite. im nervous and excited. does he always find something? im wondering if he might say oh its just bad luck, i have had 2 mcs.
hope its ok just to drop in with u all.

Duggs - yes to drinks for the still un-duffed-up/ taking a break people!

Pm me :)

Anyone else?

Hi to all,
Just a quick update from me,thankfully the brown discharge stopped and I had a reassurance scan at EPU and now I am 6 weeks. All looks fine but the lady who was doing scan was so insensitive she looked at my history and was so negative. Saw dr s and now following a medical plan with some additional antibiotics.
sue
Thanks for the information please can you give me the details of your acupuncturist as I want to have a consultation and see. I have to do something to my anxiety levels just going crazy...
All the best to everyone

Oh ari I didn't know dr s did these tests? Why doesn't he offer them then to people having no success on his programme? I thought he didn't believe in the extra testing ? Oh well wasn't sure whether to even mention I had had them and subsequent treatment as couldn't be arsed really as my only link to him will be for SO if I need it. 9dpo today feeling exhausted as sick but probably jet lag

scooter words fail me (well they don't, but the words I have in mind aren't constructive). And so astonishing that the same thing happened to sarah - too much of a coincidence to have it happen at two different hospitals; perhaps the miscarriage assocaition could help with education. Do you have the emotional energy to complain to the supervisor of midwives at the hospital and PALs? Id be happt to draft a letter for you while i am on bed rest (will explain below) i'm so sorry.

Hi cartoonface hope your appt goes well. For a large part we are a self selecting group as we are all on pred or have been at one stage or another. Statistically I am sure some people come back with normal test results but if you've had more than a couple of mc or unexplained infertility for a while there's usually something else going on - though not necessarily nk cells as you'll see from duggs helpful posts.

Hello choccy. Rubbish news about your Dh. How is he doing? And you? I just had the year anniversary of my dads death- mum was staying with us so it was pretty harrowing. But lots of nz Olympic rowing success to distract us (that's the sport scooter. Can you tell from my build I used to row too? Not lightweight division that's for sure )

Was going to clamour to be allowed to join you for drinks to as I would love to see you all but got a bit of a shock last night as my fetal fibronectin test came back positive from the prem clinic. 25% chance of going into labour in the next two weeks. I am 28+4. Have to take it easy and be retested next Wednesday - the test has a high false positive rate. Had a steroid injection today to help mature the baby's lungs but other than that I just wait around and hope...

free unless I am in hospital, can come and see you still on Monday as I can drive - assuming you don't make me walk up a hill or shift furniture or anything.

sarah and kittens really thrilled everything still going well for you both and also for the other good news on the thread - sorry can't scroll back and check who's doing what - brain a bit scatty today.

PQ, gosh, I hope that is a false negative and that the steroid injection helps. How stressful for you. Do take it easy, won't you? And keep us posted with how your tests go next week. Sending you a massive hug. The anniversary of your Dad's death must've been a very emotional time, especially with you being pregnant too. This is something playing on my mind a lot at the moment as well

Thanks kittens holding out for the false positive, not packing a hospital bag or anything at this stage...rather unnervingly though my mother arrived a few weeks ago and announced that her clairvoyant (whole other thread...) foresaw that I would be on bed rest soon. Oh how I scoffed and rolled my eyes...

PQ blimey. That's rather stressful. I'm very interested to know about this test you had and what the prem clinic is though - I too am at risk of early delivery because of last time but never heard of a test to predict it. Good that you had the injection for lungs. had That for ds only 24 hours before he was born but it did the trick. So what do you do now? Just try to relax and cross your legs?! At least each day you are 'cooking' a little more. Ds was 26+6 and is totally fine now. I know that doesn't make it fine for every prem baby but each passing day increases your chances of it all working out ok. Will be watching the thread!

PQ you r well prepared. Hopefully you will have no issues but best to be cautious.

Thinking of you.

Well, I've just done an American early test at 10dpo and nothing initially, now a ghost of a line but is thick and a tinge of blue.Might pop a pred ( my first since April) just in case. Such a head-f*%k as I don't know for sure if it is just wishful
Line - reading morning to everyone !