TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

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!

Hello- I haven't posted here in ages but have been lurking and trying to keep up. Such a lot of strong ladies on here with so much support for each other.
I had my dd in march last year after 3 mc's in a row (we started ttc in march 2010 and dd arrived march 2013). I was under consultant care with dd and prescribed pred, heparin, high dose folic acid, aspirin and progesterone. I hadn't been tested for nk cells (under nhs care in the north and wasn't offered). Anyway it did the trick! Fast forward 9 months and I find out I am pregnant again (just last week). Quite a shock as still breastfeeding and it has taken us up to a year to conceive in the past and my last 2 pregnancies (3rd Mc and dd) were via IUI. Anyway I am not able to take the drugs this time due to the breastfeeding. I suppose I am looking for some kind of miracle story that someone knows someone or themselves has managed to have a healthy baby after recurrent mc and with mo medication (clutching at straws!). I am really hoping that my last 2 months of mat leave with my little one aren't filled with stress and miscarrying and most likely a erpc as I don't seem to 'give them up naturally'. Trying to keep calm- not easy!
Anyway hello again to everyone.

Hi smee am guessing you mean congrats to team as she has just had the positive scan.

Hi Jemima its great to hear that you got your DD after 3 MC's! Best of luck with this next pregnancy too.

Hi desperately I am so sorry to read about your 12 miscarriages and hats off to you for being so brave and carrying on, I think its admirable and with that courage I feel very hopeful that you will get there. I paid to have my NK cells tested through Dr S, in total my tests came to about 1k that included thrombolias as well.

In other news I have my first scan (NHS) a week today. I can't stop thinking about it, and I can't stop second guessing EVERYTHING. I am hoping this week flys by and is boring and uneventful.

Smee haha thank you!

Desperate welcome to the thread and tentative congratulations on your pregnancy! Why isn't it looking good? I'm so sorry to hear of all your loses! I think k it's amazing that you are still trying! Your determination is inspiring!!

Re NK cells it was private! We did ask on the NHS but according to them there is not enough proof that NK cells have anything to do with it!

Jemima tentative congrats to you too! Are you going to be seen by someone to find out how far along you are?

Tum exciting times ahead!

Xx

Desperate I asked about NK testing and was told it wasn't funded by the NHS. It cost me £350 to see Prof Q, worth every penny. Treatment once I got the problem diagnosed has been no problem on the NHS but I'm not on any of the expensive treatments (intralipids or IVIG) which I think you'd have to go private for if they were recommended.
Someone on the RMC thread did get Dr Raj Rai at St Mary's to test NK cells on the NHS but that was at a tertiary referral. It may depend on your area trust - no harm in asking...

jemima welcome back and congratulations. I hope this unexpected pregnancy works out for you.

tum hope you have a quiet week and good luck for the scan.

team congratulations on your scan! Hope today's goes well

desperate I had my NK cels tested on the NHS, but I live in Mr S's NHS trust. I pay to see him privately though and the cykotines test was private as humira isn't licensed for fertility treatment on the NHS

Jemima many congratulations!

tum hope this week flies by for you

Afm, got my blood test results back, so just waiting for first AF post m/c then getting started again

Thank you Remember

Scan with Dr S went really well! I'm measuring 6wks and saw and heard a lovely heartbeat! All looks spot on for this stage!

Historically it's always been smaller for my dates and barely a heartbeat at this stage!

So so far so good! But still a long road ahead!

Xx

team

team - that is great news.

Lovely news Team, really glad to hear about your scan.

Tum good luck with the waiting over the next week. These weeks do drag don't they?

I'm still feeling very sick and have been absolutely exhausted and headachy these past few days. Waking early with pred, last night at 1.30am and then can't sleep again. Very frustrating.

Am meant to be having 10 week scan next week in the NHS but haven't been sent a date yet and my midwife is away until Monday, so am getting anxious that I have been forgotten. Have days of not worrying and feeling really positive and many other days of fretting. DH is away at the moment and it has felt more difficult than usual managing DD's terrible twos.

I've told work and they've been really supportive about time off for scans etc and explained why I am so sick. I think they thought it was a monster hangover.

Waves to all xx

Thank you everyone!!

MrsP good news about your scan next week! Are you still feeling rotten?
Maybe call the hospital to make sure your appointment is in there?
I know what you mean about having positive and then negative thoughts! And it's worse when DH is away too! It's horrible!

As soon as we had the scan last night and I had just seen and heard I panicked and was fearing the worst for next week! It's crazy what pregnancy does to you lol! You worry about these little ones before they are even here lol!!

Hope DD is being good today!!

Xx

Team that is fantastic news!

Brill, Team.

Team we are doing exactly the same. I have a print out of my scan and sometimes it makes me feel reassured and other time I just go bonkers worrying myself to bits. I'm also obsessively checking if I still have pregnancy symptoms and then decide they are probably pred side effects. Except I have popped out of my bra and am refusing to buy a pregnancy bra because the last two times I did, I had a MC I am not normal nuts.

DD has gone to nursery today and I am lying in bed with the laptop working from home. As soon as she arrived there she told them 'my Mummy is so sick all the time, bleurgh, like this' and did an impression of me throwing up. The other toddlers were eating breakfast at the time.

normaly

Nice one, Pixie
Yes, I always found that a scan was reassuring for all of 2 or 3 days! But at least it gets better the further along you get.

Just had an amazing conversation with Penny at Serum. What a lovely woman! I can't believe someone who works for an IVF clinic has just advised me not to have IVF. She said there's no advantage over my natural cycle because I wouldn't produce many eggs. She even said don't do superovulation. She said she sees my history over and over again with women who tested positive for chlamydia on their special test, which I did last year. And she days my recent history is no different from that of many 30-year-olds she sees. She said the chlamydia gets into the cells of the uterus and reduces blood flow and causes scarring and the high NK cells. And even the antibiotics don't work forever. She said it can't be removed permanently; it comes back a year or so later even after treatment!
She advised: hysteroscopy, 25 days of antibiotics for me and my husband, 3mg melatonin (has anyone been advised to take that? It improves egg quality), 5mg folic acid, vits for my husband and for me to continue the DHEA. And to get shagging! I feel strangely liberated. No IVF or superovulation! And the difference is, I believe her, because I felt she had my best interests at heart.

Duggs, how are you doing?

brown Yes that's exactly what I like about Penny - she actually makes you feel like she cares about you and not the €€€. Excellent news that you don't need to do IVF or SO - I do know about melatonin to help with egg quality (incidentally helps you to sleep!) and I've heard what she says about chlamydia before. Will you go over to Serum to have the hysto? I can recommend it thoroughly, I've never felt so immediately well after a general anaesthetic - after my hysto I was up and about and trekking round the Acropolis within a couple of hours!

I'm having a bit of a wobble with trying to take one day at a time and keeping positive. That was the plan. Yesterday has cm tinged with spotting on wiping. Not there now, but also I don't feel pregnant, (6weeks today) and although I could put this down to the pred. I am just not feeling as bloated either...... I want to get my positive thinking back, any suggestions?

I never feel pregnant on pred; I remember with my DS saying to Mr S at 8 weeks that I was worried I didn't feel pregnant and he said for many women pred completely masks the symptoms of pregnancy. It can be used for morning sickness after all. Think of it as a good thing!

Hi All am back with you after my hibernation period. I needed the week to recover physically, but as many of your will know & understand, more mentally. Don't remember ever feeling so drained and exhausted with any other of the mc's but this was also my first one on all the meds.
Anyway procedure went well (as far as these things go). Was a strange thing for my DH to drive home with our foetus in a bottle and then hand it over to a courier - glad I was still in hospital for that. Now we wait to get some answers. Am slowly tapering off the Pred and am now down to 25mg from 40mg and am already noticing that I am sleeping longer. Really think that the sleep deprivation makes the pregnancy fears so much worse.
I have read through and caught up on all the posts for the last week. Too many to respond to individually so apologies if I miss someone out.
Team I asked Mr S & Louise about testing my HcG levels & NK Cells following this mc to determine if the Intralipids & other meds had worked or would IVIG be a better option. Response was that they don't do that and there's no need which I find very strange. Louise let slip that their results are based on a consistent testing method and I got the impression that they don't like to deviate from this. He is pining answers on what the genetic testing will tell him, but if the foetus is OK then by the time we get these answers (2 months down the line) by body will have readjusted and my NK Cell levels will be different. All very concerning - especially when we are prepared to pay to ensure that my treatment is working. At what point do we move from people individual cases to being a 'white paper' and test results?

Smee / Team / MrsPixie and Anyone else that I have missed and is pregnant I am crossing everything for you and wish you all positive and relaxing thoughts – and I know that these are all hard to come by.
Village how are you doing?
Waves to all and anyone that I have forgotten – sorry for the long posy

Team that's absolutely wonderful news about the six week scan!

Luna, great to see you on here again. I'm so glad you're up and about again and looking to the next stages. This process raises so many questions... how to get the best advice; what sort of treatment to pursue; to do SO or not (as Brown was saying earlier). I so hope you get the answers you need. I'm feeling a bit down about it all at the moment, to be honest. My heart goes out to all the pregnant ladies on the thread who are having spotting or experiencing anxiety. xx

Hi all, long time no catch up. I haven't read back to see who's new and what's going on but I gather from Luna' post that you're going through an mc so I'll just offer my sympathy and thoughts and best wishes to you and say take time and look after yourself. Also trust the advice you're being given, they know what they're doing. I had 3 mc's on treatment and only had NKCs tested once at the outset.

I dropped by to let you know that there'll be a lady on the Victoria Derbyshire programme on Radio 5 this morning who's had 20 mc's and now has a little boy following taking anti malarial drugs. Sounds like Hydroxy to me. I'm sure it'll be available online/iplayer afterwards.

Waves to anyone who remembers me - currently 31.4 and all seems well. I'm feeling fit and well, although I've developed gestational diabetes which is a bit of a pita but it's in my family so no surprise. Managing it with diet so far and it's fine in fact not a huge inconvenience as I haven't really changed my normal diet!

Best wishes to all, sorry for lack of personals.

choccy Great to hear from you; I was just wondering the other day how you're doing! Sorry to hear about the GD but great that you're managing it with your diet at the moment.

luna Good to see you back, hope you're doing ok.

Massive relief - all is looking ok at 20 week scan and we are team pink! The only concern is baby is slightly small, about 19+2 so a few days behind or about 5th centile for a 20 weeker, but I already have growth scans booked because of the steroids and sonographer not too concerned. I got a really long look at her because there was a student who repeated the scan when the sonographer had finished, and we got lots of (free) pictures.

Choccy, over the moon indeed to see your post, ten weeks till another announcement then! What a journey.
Pleased to see some happier scans, that is great news Baking. I had growth scans booked too, though ended up having loads more due to my frequent panicked trips to triage whenever the fear got to me.

Thinking of you Luna x
And apologies for the posts and posters I have missed.