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

Scooter how awful for you. As you say, 'hopefully' this was just bad luck and would have happened with or without the treatment. Stay strong.

Kittens you just have to say whatever it takes, it is a family emergency really isn't it?

Yes, igggi, you're right, it is (potentially).

Really sorry to hear your news scooter.

Hi,
I am awaiting for my first scan so just keeping quite and just reading all your posts but today I am a bit worried as I am having little Brown discharge only when I wipe . According to me I must be 5 weeks plus so just wondering is it something to be alarmed.
I am on 25 mg of pred and 200mg of hydroxy ,cyclogest 400 and the usual vitamins.
Please also mention what is usual dosage of hydroxy every body is taking .

Morning Ladies.

So sorry to hear your news scooter I hope you manage to get through this awful time. It does feel so terribly unfair. Thinking of you and hope you manage to get the tests done and are able to move on as quickly as possible.

Kittens hope the intralipids are ok today. It's not too bad and I always thought they were nuking the NK's - hold that thought, try not to work to hard!!! Easier said than done.

Hanah hope the brown stuff stops and all is well.

Olives congrats on nearing the nuchal. I started weaning from 40mg at 9 weeks. Not sure what you're on but just advise following mr s's treatment plan.

On my side I hope to reach a conclusion with work today which will enable me to stay on the books for a year and then find another role if possible but keep the package on the table. So hopefully able to put to bed.

We're also debating about a big move to the west country and a huge renovation project. We must be completely nuts!!! All of which is a bit stressful to say the least with only 5 weeks to go.

Also suffering from low stomach pains which they are currently putting down to SPD. Probably is as all out in front and v heavy but does mean I can't do much at the moment which is frustrating as need to start cleaning all my dd's old things incl car seat etc. Not to mention baby has no name yet.

Hope everyone is enjoying the Olympics and just wish we had some decent Weather.

On a slightly different issue I have a friend who is about to embark on IUI and she mentioned she thinks she gets pg and then gets her period a day or so late. Never tested but she has never been pg. I wonder if anyone has experience of this and whether she should test for NK's. I have recommended the de beer book but any advice from ladies on here would be very welcome.

Sorry if I've missed anyone but hope everyone else is fine.

scooter so sorry to hear this news. Jeez it will be almost a year since we all met up and here we r..STILL. can I ask how many mc on dr s programme now? I do ask as I wonder if there may be another issue like hidden infection or something considering you have a DC already there must be something. I tried to have mc before last tested and was inconclusive as so early but you an only try. I hope they can test. Dr doesn't seem to be a believer in looking into causes rather treat the results which is fine if working for you but choccy is in similar situation too.

Sorry for being AWOL but an an holiday in Spain at the mo.
Have been lurking but not had time to post.

kittens so pleased to hear you finally got your bfp. I still think the break off the steroids helps plus did you have a hysteroscopy before this bfp?
I cant scroll back to see who was having early brown discharge but I had a tiny amount around the 5-6 week mark so was frantically googling. I read that around that time the embryo buries deeper into the womb which can cause spotting so it can be normal. I only had it on one toilet break and it was only a slight brown tinge on the loo paper.

Someone else was asking about lumps from taking the meds. I have had blind spots at the back of my neck and hairline which started to ease up when I started to taper the preds at 9 weeks. I was also on the v high plan but have doubled up on the cyclogest and aspirin so have been taking 800mg cyclogest and 150mg aspirin. I also doubled up on vitd3 when the weather was bad and I wasn't getting outside. With this pregnancy I also took the high dose fish oil in addition to the ones in pregnacare to 12 weeks plus selenium tablets and weekly acupuncture and hydroxy tablets. I have no idea what has made the difference this time but I thought I would throw everything at it. I also stopped all housework as read that some of the chemicals in cleaning products can be harmful in early pregnancy. My acupuncturist also told me to lie down as much as possible and try to rest between 3-5pm plus eat warming foods eg not salad on its own. He said soups and stews are the best foods according to Chinese medicine. I stopped all exercise and went to bed early and tried not to take on too much work.

scooter it's so unfair you are having to endure this again especially as you have been on the hydroxy for so long. I had a feeling you might have been waiting to tell us some news but I was hoping it would be good news. Did you take the clexane this time too as I remember you saying you wanted to try it? I agree with duggs that you should get the hidden infection tests done as that could be the reason. I would also recommend trying acupuncture.

I am having another set of intrallipids in a couple of weeks to be on the safe side and to help mr s's holiday fund!

Hello all. Currently lying down at new life with intralipids dripping away into my arm... Scan this morning was fab, bang on dates and v active baby. Mr s v happy. We just feel dazed and astonished.

Sending hugs to those having a hard time.

Thanks everyone for your kind messages. When things go wrong I find RL support a bit empty because no-one knows how it feels to go through it again and again.

Hey duggs it's my second on the treatment now. Fifth in total. This one I also took hydroxy and doubled up on the aspirin in case of a hidden clotting problem. No clexane. I'm not sure there will be anything to karyotype but have to give it a go because the last one Mr S wouldn't rule out chromosomal problem although it had grown to dates and good hb. This time my NK count was normal going into the pregnancy and at first I was actually recommended to reduce my dose to 25mg (ended up asking to stay on 40mg though until I had my levels checked within the pregnancy). That count was taken yesterday so be interesting to see whether the treatment kept the NK cells in a normal range. I've been told that NK counts in the first trimester can be misleading which is why they were not keen to do it. Might tell me something though.

I will ask for other tests now. I'm guessing the sperm fragmentation thing is pricey but will be worth finding out about. I would be unlucky to have a hidden infection as DH has been my only partner and there were only a couple before me for him (been together a very long time!!) But worth testing you think?

mercator good to hear you're so far along! The west country project sounds exciting, everything happens at once sometimes! Sorry to hear about the SPD just when you need to be busy. I would get your friend to have her NK's tested especially if she has instincts that she is getting pregnant and then very early failures.

hannah I hope the brown has subsided, it's always such a scare isn't it. I was on 200mg hydroxy.

kittens hope the intralipids went ok and not too difficult emotionally after everything you went through with your mum. Those sort of reminders must be very tough. Thinking of you.

sue good to hear from you and so delighted you are over the biggest hurdle now. You must be pinching yourself. Funny, I also read about the chemicals thing and stopped using cleaning products, drank filtered water, started using aloe beauty products with very few ingredients, no caffeine etc etc. But it looks like this wasn't going to work out regardless. I went to NLC to ask about acupuncture and I would definitely try that next time. Did you start as soon as you were pregnant?

sarah great to hear some good news, really pleased for you :)

Scooter, sorry to hear about the scan I was so worried yesterday I missed reading your post. Even I had a mc on treatment but this is my first one on hydroxy.
Sue, did u start acupuncture after BFP or were you on it.i am having so much anxiety with this pregnancy that I am not able to relax a minute also.wondering if acupuncture will help. As I have a history of second trimester mc my wait is too long.
All the best for everyone.

scooter Just wanted to say so very sorry you're facing this again, it's just uttery rubbish you have to go through it again. On the infections front, I read that they can get introduced through surgical procedures such as ERPC, it may be nothing to do with either you or DH. Might well be worth checking out. OH and I are just coming to the end of our anti-bs and they've caused us no problems at all. I personally feel sperm tests are also worth doing, even though OH's DNA fragmentation test came back as fine (still waiting for the SA results), as you then know without doubt that that side of things is ok (or not).
Finally bear in mind that unfortunately sometimes an embryo just isn't cut out to make it, no fault of anyone's :( Big virtual hugs and hope you bounce back from this all the stronger.

utterly rubbish, not uttery!

Firstly many (whispered) congratulations to kittens I'm delighted for you and fingers etc are all crossed for you. I haven't scrolled down to see everything but do try to take it easy!

scooter I'm gutted for you. I haven't been here for ages but ari just told me about your mc and I had to come say something. If you want to talk or meet up just pm or text me. Big hugs to you. There may not be any explanation for this one. All the drugs won't stop the bad luck aspect. But I know it's shit when you've done everything you could've done.

You're already talking of more tests- and there are plenty more you could have - but take time to get through this one too. I've just had my TNF alpha tested for instance and had about 9 tests done at my GP!

I'm not here very much at the moment - too much else going on and I'm still on my break - but do get in touch if you want a chat xx

ari, choccy thanks, good to hear from you.

choccy would you mind pming me the list of tests your GP has just done and other's you have gone for, was TNF alpha done privately? It helps to think there might be other things I could look at while I have this second enforced break.

Thank you for the congratulations.

I hope your holidays is going well sue. I'm going to need one of those once this jobs over! Sadly, early nights, warm soup and lying down are going to have to wait another week. I'm working 12 hour days and getting to bed at 1am and the catering here is quite disgusting so I am eating ready made salads that I buy at Westfield M&S in my evening breaks and bring back in in a cool bag for lunch. Hot meals from the various places at Westfield in the evenings. Quite a surreal existence for now. Like being in a bubble. Oh, and avoiding cleaning products, well I was delighted to come home last night and have to clean the bathroom at 1am before going to bed because it hadn't occurred to OH that the nurse who was coming to do my intralipids might want to use the bathroom and it was embarrassingly grim due to me being hardly home for 2 weeks!

Oh my god, I had just written a really long post and my sodding iPad has just somehow deleted a huge chunk of it with a slip of the finger! Aargh!

Now to remember, in my tired addled state, what I wrote!

Lovely to hear from you choccy, you have been on my mind and I've been wondering how you're doing. I know you've been taking a bit of time out from TTC and posting. Did you decide to have the bereavement counselling? I am finding it really helpful.

Great scan news sarah! We must've been being simultaneously infused! Mine finished at 10.30, so I even managed to get to work on time without having to make up any stories. I think I found out why Mr S is reluctant to prescribe intralipids at home. I think it's a fair bit cheaper. He did this as a one off for me because of my work circumstances but said I would have to have the following ones at NLC. Next one booked for 4 sept, following a scan at 8+4. Got a bit muddled with my dates for the first scan so just waiting to hear back for Cheryl.

hannah I also had some brown spotting for a couple of days but it's subsided now. I hope yours has too. I have been assured by many that brown spotting is not a bad sign so fingers crossed for both of us.

scooter thanks for asking, I was fine with the intralipids. It was a little poignant but not upsetting. I was talking to my mum in my head, saying "does this look familiar?". I am trying to tell myself that she's watching over me and trying to keep me calm. Her ashes arrived, with my stepdad, back in the UK last week. About the time I got my BFP actually. Not that I am thinking in "wooooo" terms, but just that I feel a bit more settled as a result as it's been a bit of a fraught few weeks waiting to get permission from the French authorities to bring them over.

Scooter I am so very sorry to hear of your news. I do hope you get some answers. Yes it might just be one of those miscarriages you can attribute to being chromosomal issues or 'just one of those things'. Lets hope so. It's probably too early for you to know the next step but let us know when you do.

It's so good though to hear good news from Sarah and also Sue - sterling work checking in from Spain too, hope you're having a lovely time. Sarah great news about the scan! You must be very relieved. I know the relief only sometimes lasts a couple of days until you start mentalling again (well it did with me!) but it is really good so try to retain that air of positivity!

Wow Merc only 5 weeks to go?! Other people's pregnancies do fly by! A big project will be fun - although challenging :) Re your friend, as far as I know one of the theories of NKC is that they can attack before a foetus has time to implant - hence the women who have never had a BFP rather than had miscarriages.

How are you coping with all that work Kittens Sounds quite mad! Exhilarating too to be part of something this big (?). Hope the intralipids weren't too traumatic in bringing back sad memories.

Hanah hope you haven't had any more brown sludge as I know it can be worrying. But I also know so many people who have had this in normal pregnancies. I was on 200mg of Hydroxy too - only started taking it 2 weeks before I got pregnant, as I was one of the first on it I think, and took it until 36 weeks pregnant.

Wow - it is still weird for me to talk about my pregnancy in the past tense and to realise I actually have a baby! Not sure why it is a surprise still as I am certainly seeing a lot of him - him doesn't seem to like being put down much in the day time :) He is three weeks old today. DH and I went to the Olympics on our own the other night, which was both scary and fab to be out without him - as my mum has been here but is going back tomorrow so no more childcare on hand. It has been great to just have a spare pair of hands to help hold him/feed him/comfort him/change nappies etc etc. I was recovering really well from the CS but yesterday got a case of mastitis - woke up with flu-like aches and pains as well as a swollen and hot breast - so have to take it a bit easier. All day round Bluewater yesterday was probably not a good idea. Saw the doctor today though and all seems to be ok. She said my level of blood loss was actually counted as a post-natal haemorrhage! Hence I need to be on the iron supplements. But am taking liquid ones now instead of tablets to see if that helps ward off any constipation. It's non stop this drug taking malarkey!

Waves to recent posters Iggi, Duggs, Ari and Choccy too! Got to run as DS needs attention but big hellos to all.

Scooter So sorry to hear your bad news

Sarah Great scan news!

Kittens Glad intralipids went smoothly -I am in awe of you being able to stay up until 1am! Even with the Pred I am ready for my bed by 9pm most nights - I am generally wide awake by 5am tho courtesy of the Pred and/or pregnancy bladder!

Free I hope the mastitis clears up quickly - ouchy!

I have no choice olives. Believe me, if I could go to bed at 9 I would jump at the chance!

scooter if your nk cell count came back as normal ( like my did after my latest mc ) then I would suggest another avenue? Dr S isn't a huge promoter of other avenues as doesnt help his holiday fund and ventures into other fields. I can PM u the full list I did with dr gorgy in may that found 3 infections 1 with DH and 2 with me despite being cleared with our ivf mandatory screening. I've been with DH 5 plus yrs so god knows how long theyve been around -they were hidden deep in my uterus though and only a trace but still. It did put DH sperm into poor category for fragmentation even though he had 200million and good motility etc let me know if you'd like more info ?

scooter so so very sad to hear your news. I had been thinking of you and wondering how you were getting on. You asked about how much rhey need to be able to test - not much I believe - I had a blighted ovum (so microscopic) but they cOuld still tell from the other material (placenta?) that the embryo had cri du chat syndrome. Quite incredible. I hope you get some answers, I found it really helped having that "diagnosis" for that mc.

kittens and sarah really pleased to hear all going well for you both so far. Everything crossed!

Sorry I am just trying to catch up on everyone else's news and it may take me a while - have had a family member competing in the olympics (not team gb!) so have had lots of family visiting from back home and have been a bit of an Olympics bore.

Hey kittens just wanted to reply to you, thanks for asking after me. I had a half hour telephone consultation with some counsellor but having been told their organisation couldn't help and being "signposted" to various sources of "talking it through" type counselling, I decided I have enough of that kind of support at home so haven't followed it up. Not to knock it, naturally, but it just didn't feel like it would help me and I honestly went into the telephone thing completely open.

I feel much better now, still have the odd moment but not days/hours any more. Much more myself, enjoying work again etc. I had to totally snap to attention a couple of weeks ago when dh was put at risk of redundancy (employment was terminated today ) meaning I had to be the strong one. It does feel like we can just never catch a break, with one thing after another, but equally it feels like a little victory that I haven't collapsed in a heap over this latest challenge.

Just read back a bit, I hope the spotting has stopped? Take care of yourself. I'm so delighted for you!

Waves to everyone who remembers me from before I went AWOL!

Choccy lovely to hear from you and so sorry to hear about you DH. It's an awful thing to go through and a real shock. I hope he finds something soon. I really empathise as I've had a similar fight but procedures were done incorrectly and I have won my mat leave but role has still gone.
Good to hear you're feeling a lot more your 'old' self!

Sarah I also started acupuncture before my BFP and I think it did something to my cycle as I OV'd on day 12 not 14 as usual and that was the month we got lucky. Very strange but I went to the same chap as Sue. he also recommended lots of warming foods, soups etc. Advice I did follow, also mentioned taking it as easy as possible! I know how hard that is sometimes. Maybe you could take a flask of something? Enjoy the remainder of the Olympics as almost over now and hopefully you can then relax a bit.

Scooter you sounds so amazingly resilient from your post and thanks for the advice re my friend I hope she goes to see someone. Do hope you manage to get through this b...dy awful time. Thinking of you.

Kittens sorry for some reason got your and Sarah merged into one in my response. I know Sarah asked about the Acupuncture. Hope all goes well and you can relax in 5 days!

duggs really interested in tests for hidden infections , tried to pm you a few days ago for more info but not sure if you got it .

scooter im really sorry about what you are having to go through again, this yo yo ing is so crappy!

scooter/hannah I was told that it's best to start acupuncture 8 weeks before you start TTC. That will then help regulate your hormones etc. I would check that the acupuncturist you choose is part of the fertility network. The acupuncturist that *mercator, dunnit and myself is part of this network and specialises in fertility in particular immune issues that we all have. He was a great tower of strength and helped me through the early days of this pregnancy when I felt really frantic. Having acupuncture relaxes you and he could also tell if the baby was still alive inbetween scans which was a reassurance. He gave me loads of advice on TTC including keeping the feet and stomach warm at all times and got my body back to a normal cycle after a miscarriage. He has helped women conceive who have had failed attempts at ivf and then conceived naturally. I was sceptical of acupuncture until i tried it but bearing in mind that there are 3 of us on here who have had success so far it must have helped. My friend is also about to give birth to twins who saw him when she was told she had a tiny chance of having more kids through ivf. Her husband saw him too as had a virtually zero sperm count but he managed to improve that so that it was good enough for ivf. btw I am not on commission!

free have you been to the docs about your mastitis as I think they can give you antibiotics? Don't leave it as it can get worse!

sarah well done on the scan - I am still in denial that I am pregnant so expect the worse at every scan! It's another massive milestone that you have passed.

kittens I think the flask of soup is a good idea. I was told to try and have at least one piece of hot food such as a jacket potato etc if you have a salad. It's more the evening meal than a lunchtime which might be easier for you to sort out. Maybe just try and sit down at work as much as you can?