TTC: Pregnancy on Prednisolone or similar part 7

[ChoccyPud]

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!

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

My DH referred to him as 'Mr S' in front of one of the nurses there. I felt rather embarrassed that we were calling him a pet name in public :)

And London. Yes the St Mary's thing is a bit odd. I went too but I was already 6 weeks pregnant by the time my appointment came up. The female doc I saw didn't grumble about the steroids. The only thing they were able to do for me (as I had had all the tests they would recommend too) was give me a TEG test as this is something that can be clear when you are not pregnant and not clear when you are pregnant. Then they offered me a few fortnightly scans for reassurance. I get the feeling Mr S was annoyed that I went to see them and I should have just trusted him. I do trust him implicitly but St Mary's was free and I wasn't going to turn down free scans and attention.

London have you had any of the 'products of conception' tested for genetic issues yet? I know this is hard to do.

Yes, I got the impression there was a bit of tension between St Mary's and Mr S! It is interesting they were so vehement about pred when my NHS consultant was of the opinion "what have you got to lose, it can't do any harm and has worked for many", which was fairly positive at least.

Unfortunately, I haven't managed to have the ole "products" analysed as on the first few the NHS didn't suggest it and I always have natural mcs and on this last one I was only 8 weeks so harder to catch. Sorry TMI, I do apologise!

oh...not enough time to catch up properly and do everyone justice but will post and run (to get some sushi...found a place where they make sushi with cooked salmon. Mmmmm)

igggi I am so thrilled for you. How is the wee one's colour now? Have you had the paed new born check? Though that might not bring much reassurance as the paeds registrars at my hospital seem to be about twelve years old.

elibean thank you for popping on here and saying hi, it means a lot.

duggs, am avidly following this next step. You are obviously a special case.

euro if you could bear it (which you might well not at the moment) do think about a laparoscopy again...I've had two and had no scars, even though they had to put in an extra two incisions over my ovaries to get at all the endo. But I really appreciate that you feel poked and prodded so please don't think that I am hassling you

sue this sounds promising. Keep us posted...

choccy woo hoo for holidays and getting away from Other People.

free I could have been writing your posts in 2008. Hypnobirthing and an independent midwife meant I went from hoping for an ELCS to being really excited about having a natural birth. I am hoping you can find that confidence and excitement too. FWIW, only two of my friends have had long term probs post natural birth but they are relatively minor and both related to forceps deliveries. Neither niggles have, so I am told, interfered with their sex life!

Having had an emergency c-section, yes the recovery was fine, but am now learning a bit more about what the consequences are for this pregnancy - increased risk for me and baby. Obviously it is entirely your choice but if you can avoid a c-section then i would say try to if you can (of course not always possible like in my case!).

will have to catch up with everyone later, happy Friday all

PQ lmao at "Other People" that is exactly how I feel about this holiday.

Sorry for lack of personals/responses to other posts I just had to say thy made me smile :)

Will catch up properly later.

A very quick one as I said I would avoid MN unless I was feeding as I really need to prioritise sleep at the moment.

Sue - I meant to say in my last post - I totally understand why you don't want to go on the list yet but it's a good start. Keep us updated!

Free - the whole thing about people with high NKC needing to deliver early is not the case now. I specifically called up and asked Louise about it, as I was really worried. She said that as I had had the treatment it wasn't an issue. The issue for me needing to be induced was my age and the risk of placental insufficiency in older women, not the MCs. Hope that reassures you a bit.

London - sounds like your appointment was positive. It'll be interesting to see how it compares with Mr S next week.

I have a feeling you can eat sushi made from raw fish when pregnant, PQ. As long as the fish has been frozen beforehand. Here

Duggs - I think I've been saying his name wrong too then! I've been saying Sha-haar-ta. Is that wrong?

Hi all,

Well done for the babies and bfp. Really interesting reading your different stories. And I totally agree that its so frustrating that there is so much that doctors don't know the answers to yet. I think Mr S is quite courageous for going against others' opinions, and am anyway at the point where I'll try anything!

I haven't posted a lot on here yet as I'm a bit different from most of you in that I've never got to bfp stage (after 4.5 yrs ttc) and up until seeing Mr S was 'unexplained'.

Its interesting reading about the different results for nks and thinking about what that might mean. For comparison my nk count was normal at just below 200, but activation marker was 5.34. I wonder if the count or activation marker has more of an impact at different stages? I also wonder if pred acts indiscriminately against both, or more against one or the other?

Am on first month of Mr S's plan with SO (letrozole 5mg) and day 9 of pred. Test day is sunday (which i'm dreading as they're always negative so that usually ruins my day!)

Anyway, waves to everyone and wishing you a lovely weekend. x

It's so interesting reading about our different perceptions of Mr S. I haven't said much on here about him because I was worried about offending people who do have faith and trust in him but I can honestly say that I did not warm to the man at all on the two occasions we have met. I found him to be disinterested in my history and despite inviting questions he then seemed impatient at having to answer them and I felt the whole time that I was being rushed in a "time is money" kind of way! I am very sceptical about why his treatment plans/opinions seem to vary so much between woman who appear to have very similar backgrounds? At my initial consultation I asked what would happen if my NK cells came back as normal and he said "they won't, but even if they do I would treat with Prednisolone anyway" That made me think that this was a money making exercise for him as why would I take treatment for a condition I didn't have? As it turns out my levels are only slightly elevated and my activation is normal so part of me wonders whether the killer cells have been the cause of my losses or whether it has just been crap luck! Either way I vowed after my results appointment that I would not go to see Mr S again as I didn't really like or trust him. I know I'm fortunate in that my NHS consultant is lovely and very supportive (as is my GP) so I am able to follow the treatment plan under them. I think all these niggling doubts about the treatment are what has led me to decide to only take meds from BFP (if I ever get another one!) I think my other concern is that he doesn't seem to participate in "proper" trials of these treatment regimes and really that's the only way that advances can truly be made - with proper evidence that it improves outcomes. That is certainly the only way that it would come onto the NHS radar - hard evidence of efficacy! Anyhow, this has turned into a marathon rant now, but it's things I've been wanting to get off my chest for some time! I really hope I haven't offended anyone, it's just my personal opinion and I know that lots of you feel the exact opposite to me! I do wonder if any of you have the same doubts I have though?!

carebear I am another one on here who has never seen a BFP and I'm also unexplained save for the high NK cells. I hope SO and the Pred does the trick for you. Your reults ruin my theory that high activation leads to miscarriage and high count results in implantation failure though!

PQ I hear you but I'm not keen on having the lap repeated. No one has even mentioned it at the various clinics I have gone to. For me, I think IVF is the lesser of the two evils at this stage, although I am not keen on that either! Basically, I just want to be able to fall into bed drunkenly and wake up duffed in the morning!

Olives I think it is a healthy attitude to be somewhat sceptical with regard to someone treating you in a way that is not wholly supported by large scale double blind trials or whatever. Most people who end up getting tested for NK cells would have stumbled across the HFEA's negative view of it and also seen other views on various websites.

I personally do like Mr S. The negatives I have seen is that the appointments tend to be rather rushed (but I guess that means that more people have access to tests and treatment that way) and that he seems to forget histories (which is understandable from the number of patients he sees, but he could check over notes before appointments to save us reminding him). But overall I am glad that someone in this country is looking into reproductive immunology and treating women who are otherwise miscarrying or unable to conceive.

I hear you olives .. I think someone like abney proves the point that pred can work sometimes and sometimes it doesn't as she has had a child and also 4 miscarriages on it.. what that proves is.. umm? I am not sure...so random.

I guess the ladies who get pregnant within 2 or 3 cycles it isn't an issue.. but for us who have been "suffering" for many many more months the frustrations come out and you expect a bit of direction which doesn't seem to happen.

He is trialing and testing and we are guniea pigs at the end of the day.
grrr...

Greenolives, I feel exactly the same as you, and my cells are at similar levels to you, which makes it so much harder to embrace the NK theory wholeheartedly.

That said, I am so desperate, I will try anything, which is why I am going back to see what he says post the latest mc. Also, I guess I just want to know that I have exhausted every test to help lower the mentalling levels in the next pregnancy!! Should it happen of course!

Just out of curiosity, do we hear much about people who've been tested for NK Cells and come out as "completely normal"? I can't help but wonder if Mr S's response of "they won't" was based on the fact that perhaps raised NK Cells is actually not as unusual as we think.

I find him to be mostly quite "kindly" in demeanour, but I am feeling unsettled by his dismissiveness of our various concerns. In particular the one about suddenly failing to fall pregnant when it happened so easily before (for quite a few of us). As well as the lack of consistency in responses.

I'm laughing at the speculation of the correct pronounciation of his name. My OH called him "Dr Hfuhruhurr" the other day, as in I fell about laughing!

It's funny the bird shit thing. It's like Kennedy's shooting. You never forget where you were the day you were shat on by a bird. I was in Liverpool, on my way to work on set on Brookside! I think it was my first day too, which was a bit embarrassing.

Hahaha, loving Dr Hfuhruhurr! LMAO

euro your theory is interesting - but wouldn't do me much good if its right! Best of luck for your current IUI.

I suppose my current perspective is that after 2 failed IVF's and all the other investigations i've had, if it wasn't for this my only other option would be more ivf which doesn't inspire me with confidence that that would work. I'd sooner take his direct and brisk manner over some of the numties i've seen on the NHS over the years! - and actually in 4.5 yrs he's the first doctor i've seen more than once so have no expectations of him remembering anything about me. Am sure i will change my tune if it doesn't work and he's not changing my meds, so its good to be forewarned. You definately don't get long appointments for the money.

That's funny about his name. Having kittens i'm impressed your OH got even close to his name - DH the other week pointed at a picture in the paper of a completely different Fertility consultant and said 'oh look its our doctor'

Oh I am laughing out loud . . Bird pooh and care DH pointing to dr s but not dr s! Hilarious thing is at least with dr s he is clear dr g is Greek origin so DH just heard yarrrddddd nk ck lk £ £ £ biopsy. . Trial . . Womb. . Sperm . . . Abstinence . . . Rahhhh ! I was frantically writing down things in my "little book" like a lunatic -(think bubble from AB fab in the 90's) fax. . Sent. . Urgent. .. Somebody . Female!!! That is what my notes look like haaaa you have to laugh don't u! Roll on my 50th birthday only 20 more year to retirement and no chance of reproducing can't wait !!!!!

Posted this on the superov too ..

Aarrgghh Morning ladies .. 12 dpo and I just got a faint BFP on a FRER. I don't know what to do - I feel like sue, I just think because it's faint it's going to turn out to be another chemical. Second cycle of no Pred. I don't know whether to take te Pred and book intralipids for Mon if poss or just wait a few days and see what happens. sue how are you doing?
I should just say, the pregnancies that have turned out as 'real' although I then miscarried, I always got a really strong BFP on 12dpo. The ones that turned out to be chemicals I only got a faint at 12dpo. :(

ari that's great. can you get a blood test today? My epu does same day hcg bloods and that's what convinced me to go ahead and book intralipids. FWIW my FRER was very very faint this pregnancy (and I was used to getting a much stronger response).

my tuppence worth would be to start the pred at least.

fingers crossed

duggs you are so funny.

My DH has facial blindness (ok not the properly diagnosed medical one) but he can meet a friend or colleague of mine 10x and unless they are wearing exactly the same clothes/makeup/hairstyle he looks right through them. There is no way he could pick Mr S out of a line up of ob/gyns. One day he is going to bring the wrong kid home from school, I just know it.

Said on the SO thread..but these 2 BFP's from Sue and Ari after coming off pred say a lot.. pred does muck up some people's cycles.. Dr S HAS to listen to what we are saying to him with these examples. Nothing for months.. then you both come off and BAM.x

Hello to all - London, CareBear and Abney in particular as haven't 'spoken' to you all for a bit.

Oh my goodness Ari! So that's you and Sue we are watching like hawks and who are POAS like mad for the next few days! I won't yet say the C word but it's hovering...We all know what a worry it can be.

All I can say to both of you is you should have seen the BFP I got with this pregnancy. There was barely a line there at all. No 'BF' about it.

It would be so wonderful if we had a couple of new pregnancies on the thread!! No pressure or anything ladies...

I remember when Mr S and the team were so happy that my scans were doing well it almost felt like added pressure - like I didn't want anything to go wrong for (obviously many other reasons too) worry that I might let them down.

Am chuckling away here Dr Hfurrhr and the DHs/OHs all being so crap with knowing how to say his name! Mine is exactly the same! How hard can it be?! We are obviously taking the whole thing a lot more seriously than they are :) I bet they wouldn't do that at work!

PQ that's madness about DH's (albeit undiagnosed) face blindness.

Mind you I was in Soho yesterday getting my nails done (I had four hours to kill between finishing a voice over and meeting friends for dinner) and ended up sitting next to a girl I know and wracking my brains for about half an hour as to what her name might be. So unlike me.

I can't remember now whether I have ever been pooed on by a bird. Not in a major way I don't think. But I also forgot to mention that the other day I saw a magpie that had been squashed by the side of the motorway! Tried not to think too much about it...

KIttens one of the friends I have sent to Mr S came back with no issues with NK cells. So I think it is quite common in the people that end up going to see him, maybe because we have all kind of sussed we might have a similar problem in order to find our way to him, but there are people who go along and are fine. Which much be frustrating too as then you think - well, what IS it?

Wild and crazy pregnant bird here didn't get in until 2am! But the last hour or more was spent getting home. Had a meal out with friends in Soho. Was great! But having already spent several hours hanging around by the time I got to walking around tubes etc on the way home my lower bump was killing me. It felt 'ligamenty'. All ok this morning after a good night's sleep.

wow free that's very rock n roll of you 2am and in 3rd trimester

I realise I was a bit vague with my Dr G reports and some of you were hoping to get a bit of an insight so I have been looking around online and have found the following :

List of The Level 1 and Level 2 tests.
The level 2 has to be sent to USA

My level 1 tests were:

1. Full blood count, liver function tests, Urea and Electrolytes
2. Thyroid function tests (both free T4 and TSH)
3. Immunoglobulin panel (IgG, IgA and IgM)
4. Autoimmune antibodies (must include anti-nuclear antibodies,

thyroid peroxidase and anti-mitochondrial antibodies)

1. Anticardiolipin antibodies (both IgC and IgM)
2. Thrombophilia (must include lupus anticoagualant, Factor V Leiden

and Panthrombin gene mutation)

My level 2 immune tests aka the 'Chicago Tests' completed at RFU were:
Natural Killer Assay
Th1:Th2 intracellular cytokine ratios
HLA DQ alpha (male)
HLA DQ alpha (female)
MRTHR
Leukocyte antibody detection

I believe Dr S does level 1 only, but of course some people will have been tested for some of the things elsewhere I should imagine.

I have now had level 2 and also the hidden infection tests sue always talks about.

I should have results back in 2 weeks and DH had sperm fragmentation test which is back in 5 weeks.

I will keep you posted.

x

Ignore the bit about RFU.. that was some one else's post I was just copying their list. Mine were done at the Fertility and Gynegological Academy Dr Gorgy but other places do them, including Dr George Ndukwke at Zita West.. no appointments free until October can you believe?

Ari Fingers crossed! I would start the Pred.

Sue Any development with your line?

Free I am amazed at your stamina - 2am is hardcore!

Very interesting Sue and Ari have both got BFPs after not taking the pred. I hope they both work out. It's a complete dilemma whether to race and get the intralipids or wait it out. I think on balance i would probably go for it on Monday. I presume it's not possible to walk into a private clinic today to get HCG tested and then again on Monday?

Like Free and PQ I had also fancied a ceasarean when I first got pregnant but have now wholeheartedly gone the other way. I honestly thought having a CS seemed like the easier, less risky option but the more i looked into it and weighed it up the more I could see that in my circumstances (i know other people have other issues that need to be considered) it was actually the opposite. The main things that changed my mind were that the risk of all the very unlikely things (like death, scary hemorrhaging, hysterectomy etc) were all slightly raised for CS (but still very low of course), but also as i would like to try and have another one day it seems like the CS option could increase complications in future pregnancies and birth. I also found out lots of other benefits which I hadn't known about such as they think the baby's immunity is better if delivered vaginally and breastfeeding and bonding is supposed to be better/ more immediate due to the oxytocin you produce in labour. Having decided I wanted a natural birth I then looked into ways of making that more likely to happen and came across hypnobirthing. I've now completed the course and both me and DH both feel much more confident about labour and delivery (even though i did not do the hypnosis due to epilepsy as a teenager). Also because I have no family living in this country if I have a CS I will probably have to hire some sort of live-in help after the birth which i would really rather not do.

My friend saw Dr S recently and he said that raised NK cells are not a reason for pre-term delivery - as coconut confirmed with Louise.