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TTC or pregnancy on prednisolone or similar part 10

(1000 Posts)
roseandroli Thu 14-Feb-13 10:17:57

We are now on part 10 of this thread! 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 9:

Part 8:

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2 here

Part 1 here

duggs1976 Tue 09-Jul-13 15:13:40

Mr S I mean

Buzzybee123 Tue 09-Jul-13 21:05:07

free when yo say you took the Hydroxy to 32 weeks did Mr S suggest this or did you decide to keep taking it??

freelancegirl Tue 09-Jul-13 21:30:31

Mr S told me to Buzzy. I can't remember if that was the exact week but it was around then. I'm doubting myself now but, yes I am pretty sure. Will look it up on my diary!

freelancegirl Tue 09-Jul-13 21:32:07

That was quicker than I imagined - it was sitting there on iCal - 36 weeks as directed by Mr S. But these things change and he has had other people on it since then, I think I was his second person on it, so he might have changed the plan.

freelancegirl Tue 09-Jul-13 21:34:27

I hate to link the the Mail but I saw THIS here earlier and thought it was interesting - about the rate of miscarriage increasing for people who do shift work. I did a night shift for over a year and I found it really messed up my thyroid and general wellbeing. It was a while though in between stopping the night shift and TTC - 4 years in fact so probably not relevant.

PQ77 Tue 09-Jul-13 22:09:12

choccy helllooo how are you??? Bfp - yay! Here to hold hands if you need it!

mollie lovely news for you. Interesting that you are on "long term" intralipids for prem birth. As my waters went at 36weeks then 30 weeks I have been too scared to even contemplate another pregnancy but then also wondered if intralipids throughout the pregnancy might help calm the immune system for immune-related prem birth. It's not something that's being researched much in the uk but seems to be getting some interest in the US iirc.

ari I've been following your journey. Big hugs. And you too duggs. Waves to free (am on hols at end of this week then back - but with 4 year old on 7 weeks school holiday. Will give you a call when he's at his grandparents!)

Hi to everyone else. Been reading avidly but not posting as usually one handed....

duggs1976 Wed 10-Jul-13 06:46:44

Yay! PQ lovely to hear from u. I've often thought of you and some of the other early birds from here. Hope you guys are getting on well? grin Yes choccy and I still here - hopefully she is off on her journey this time everything crossed. I'm having another IVF round next month - over a year since last time after discovering my hidden infection and DNA sperm issues. My last mc on treatment was in January but my hormones were shot to pieces after being on things so long so I have come off it and turned to Traditional Chinese Medicine - sold our house, downsized and I leave my job tomorrow. All a lot of change but we are putting everything into this "challenge". I will need a new job of course but hope to get one more local not in central London. Anyway do u still see free? smile
Moved and I have given up my job

duggs1976 Wed 10-Jul-13 06:47:47

Sorry iPhone repeating itself of maybe that's just me winkconfused

mollieboo Thu 11-Jul-13 12:42:43

buzzy for info I'm on hydroxy until approx 34 weeks under Mr Shehata.

Hi pq, were your prem births immune related? Must have been a worrying time. Am on intralipids, aspirin, clexane and hydroxy until later stages of pregnancy this time.

Buzzybee123 Thu 11-Jul-13 19:26:16

molieboo is this because you have high nk cells, mine was low and I had to ask for the hydroxy and the intralipids, I think I have enoughj hydroxy to get me to 20 weeks, Shehata said to take it to 16 weeks

can I ask another question, I have gained an unbelievable amount of weight, my face is huge, as to be expected with pred, how long after you stopped taking it did you notice a change in your face

freelancegirl Fri 12-Jul-13 09:28:46

Lovely to hear from PQ although we do bump into each other in weird local places sometimes. Well, not weird places - just that it's odd sometimes to be bumping into someone who can relate to what we've been though on here and this incredible experience.

Sorry for the quickie but someone just sent me a link to an nk cells article in the Mail today. It talks about the 'mayonnaise cure' ie intralipids.

Btw another quickie - Mr S has apparently lost 8 stone now!

freelancegirl Fri 12-Jul-13 09:30:47

Oh buzzy I had a huge moon face too, it went down quite quickly though. If I remember I will pm you a video ling showing moon face and after moon face when I had a short lived pregnancy on the treatment first time. The difference is remarkable! But it does go quickly

mollieboo Fri 12-Jul-13 14:24:24

Hi Buzzy, yes I've got high nk cells. Also had appetite of a horse on pred and huge double chin. Appetite and chin are now normal, as free said its quite quick after you stop taking it.

Buzzybee123 Fri 12-Jul-13 17:55:23

thanks for the reassurance ladies, I particularly like being the elephant lady hmm I think I shall count out my hydroxy and see if I have enough to get me to 20 weeks

PQ77 Mon 15-Jul-13 07:13:45

buzzy my moon face started going at 14 weeks was gone by 20 weeks. I put on a heap of weight which wasn't helped by me massively over eating when Ds was in nicu. 10 months on I'm back to my preconception weight.

mollie there's no explanation for my waters going early - no infection, nothing, I didn't tick any of the usual boxes.

Here's the article I think free referred to -

Seems expensive compared to mr s? But it seems to be lumped in with cost of ivf.

duggs big changes for you! Am I right that this is an nhs cycle?? I so hope that everything is lined up just right for you now - Tcm, no infections etc i had those horrible Tcm herbs for 6 months before ds. May have helped? I am wishing you all the very best. I've quit my job too - am adjusting to life with no paycheque!

mollie I've been told by drs that the prem labours are "unexplained" - the immune related theory is entirely my diagnosis! But I am kind of textbook Dr Beer (endometriosis etc).

Would anyone like some leftover pregnacare preconception vitamins? And a few packs of 5mg steroids? Progesterone? If you Pm me your address I'll post them when I'm back from holiday next week.

duggs1976 Mon 15-Jul-13 21:17:18

Yes PQ this is NHS cycle. Just want to get on with it now. Anyway glad to hear you also did herbs. They have been amazing in restoring all the damage the steroids did over 2012 so am feeling so much better these days. The article is interesting as zita west and dr ndwuke are a bit more in depth than dr s again more holistic which is better for us long timers.

Glad your family seem to be doing well. Thanks for popping back.

suemays Tue 16-Jul-13 17:39:31

duggs when do you start ivf? I will keep everything crossed for you that your body is back in balance now. Let me know if you fancy catching up near maidenhead when you finish work.

ari and belly how are you both?

choccy how's the pregnancy going, have you been manically poas?

pebbles I spoke to Louise at Nlc but would need to make an appt with mr gafar. I will see how my appt goes on thurs with ndukwe and decide if I will switch to nlc or go with ZW. ZW have a much higher success rate for my age so I will prob go with them if I am happy with the appt.

duggs1976 Tue 16-Jul-13 17:54:55

Hey sue I start end of this month. I would recommend ZW they are very holistic and their immune therapy is more extensive than dr s sue but see how you go on Thursday.

Yes hope choccy is doing well?

Yep sue I will PM you.

Lemon - how traumatic. Like PQ, glad you were still in hospital so care to hand.

I've just bought a paddling pool for me, my husband and my cats Haa! Lovely putting feet in it... Just missing the cold glass

duggs1976 Tue 16-Jul-13 17:57:02

Oops sorry lemon is on our other thread - a success story (without treatment) !

ChoccyPud Tue 16-Jul-13 20:45:58

Yeah all good thanks. Remarkably calm and relaxed. Only poas'd the once - PUPO! smile

Will probably keep my head down whilst all is trundling along ok.

Hope everyone's doing well. PQ lovely to hear from you.

Buzzybee123 Fri 19-Jul-13 23:27:50

hey ladies

I had my 12 week scan today and all was well thankfully, I'm coming off the steroids and I'm starting to feel human again

pebbles how was your appointment ??

duggs if my balcony was a bit bigger I was thinking of a paddling pool too

waves to everyone else

TheAccidentalExhibitionist Sat 20-Jul-13 07:48:55

Brilliant news Buzzybee I'm so pleased for you.

I've decided to investigate super ovulation over here in France and am going to see yet another specialist next month.
TBH I feel pretty low over the whole thing. 5 years of trying, 5 MC and now I can't even get upduffed.
To my shame my mood seemed to plummet when I found out someone I know in her mid forties who has never wanted kids, drinks and smokes heavily has just discovered she is 6 months pregnant.
I thought I was passed all this..

duggs1976 Sat 20-Jul-13 11:46:47

Excellent buzzy! Accidental I don't want to speak too soon but sue over on other thread saw dr ndwuke at zita west this week and had some v interesting insights. Do you have the details of that thread? It might be helpful as steroids seem to be the devil spawn to some of us and detrimental to conceiving and intrallipids may just be enough as last 3 mths. Is such an evolving area there are developments all the time. Dr s seems to be interested in the quick conceivers and not so open to the strugglers who develop issues whilst on his programme but fortunately some other dr's out there are trailing things and discovering things which could be good news to us? Let me know if you need link?

TheAccidentalExhibitionist Sat 20-Jul-13 12:49:33

Hi Duggs
I haven't been back to Mr S since he prescribed me Hydroxy. It didn't agree with me so I took Pred as prescribed by my French GP. I've stopped everything now as Pred had so many serious side effects for me and I believe may have affected my fertility.

Even if I wanted to, I simply could not afford to repeatedly fly back to see Mr S for superovulation and he's shown no interest in me either!

I know absolutely that no one around me would prescribe me with intralipids, I've tried that avenue, French healthcare is very good but generally trails behind the UK in knowledge.
So I'm stuck with using French specialists for assistance with conceiving and then back to Mr S (or anyone else if I could afford them) once I get upduffed.

I would love to see the link, knowledge is power when it comes to fertility issues.

mollieboo Sun 21-Jul-13 09:53:40

Hi everyone

choccy glad all is well at mo.

buzzy that's great news on your 12 week scan, so nice to wean off the pred too.

accidental sounds tough for you at the moment, I hope you fall pregnant soon and can find the right treatment in France or in UK easily enough.

clabbage and cartoon hope everthing is good with you both?

My boy Oscar would have been two yesterday. We lit some candles and bought some new stuff for his garden. I'm four months pregnant now with my second boy, does make it easier, got to keep the faith that he will be ok.

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