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

Thanks Elibean we love a good news story on here. It keeps us all going through our various trials and tribulations.

he he Free to £5000 and congrats on being top of the list.

Greenolives have you got room in your suitcase for the rest of us?!

My temp hasn't spiked this month, so I am not sure if I have ov'd. I think the Oestrogen supplements have kept my temp low. Have asked NLC if I can go in for another scan to make sure that I have ovulated and to see if my womb lining has got thicker, but they haven't come back to me. Mr S also said I could take viagra to increase my womb lining but that it has side effects ! I read on an american site that it works best if you take it in suppository form, but they don't prescribe that in the UK, so for now I have doubled the dose of vit D3 which Mr S said could also help.

How lovely of you to drop by and tell us such a positive story Elibean! Fabulous too that you had a forward thinking doctor who was willing to throw what you could at it. I guess congratulations on your babies is a bit late now they are here and growing girls, but it's lovely to hear and thanks again for popping in and letting us know.

Incidentally, I am wondering how you came across us - or more specifically why? I just have a feeling that even years down the line when we are all hopefully in the same position, will we occasionally be going over what we have been through in our heads and still doing a bit of the old Dr Googling! But glad you found us and thanks again.

Confusing about the temp thing BellyD. Hope Mr S manages to shine some light on it. If you do get some viagra I wonder if DH will also be tempted to try it...?!

sue I think my NK are just too efficient. I think mine are the highest on the board at 3x the upper level of what they should be but because my activation was normal I am on the high treatment only. I did take the pred from BFP only this time. It is difficult to know if this one was just a dud embryo or if the NK are getting worse each time and that is what is causing these problems. I think I will ask Mr S re hydroxychloroquine and SO.

For those on SO how do you sort out the scans? I live a 4hour car drive away and my boss does not know I am TTC at present. Can not easily get time off work. So any info anyone can give me on this would be great.

snoopy still thinking of you and hope you are having lots of fun with the kitten.

euro it is supposed to be excellent luck if a bird poos on you. This could of just been a lie I was told when I was younger. So this could bring success to you.

Ari mthfr question. I may be being thick. I thought we were told to take 5mg of folic acid to try and max out what activity we did have. But when I have been taking activated folate only been taking a normal amount because I thought this is the stuff my body can use so do not need loads of it. Am I getting it wrong? I am sure this is only of interest to Ari and me. Sorry to bore everyone else.

Hello everyone else especially all of this weeks new arrivals

Good news elibean ! Well I saw dr G today. He actually corrected my pronunciation of dr s surname how embarassing he looked at all results listened and wrote down my history and suggested I had had some of the immunology testing out there but by all means not all. So £2400 later I am having all the remaining tests - hidden infection off to Athens. Sperm
DNA fragmentation, DQ alpha,LAD, F2sm , FGAy6, semen C&S. Tbh I went with dr s as was cheaper ! But this is it for us now so let's see what comes back x

Lemon I can't remember exact figures but Mr S said my levels were in the top 5% of anyone who comes to see him. I only have the 3.79 figure to hand though - would that be activation? But I AM on the hydroxy so maybe that has been what has made a difference. Also I have no clotting issues etc, just thyroid problems and raised thyroid antibodies.

Wow Duggs that is a raft of tests! Great that they are exploring every avenue though. At least you know you are trying everything you can. Do you actually have to go to Athens or are they sending it off for you?

I confess I thought your pronunciation of Mr S' name was a bit odd when we met up but because you didn't change it when I said it the way I thought it was pronounced I doubted my own pronunciation and stayed schtum

Elibean thank you for telling us about your experience, more hope for us still on the wrong end of all the heartache. :)

lemon I've got v high levels, which reduced after taking Pred in my December pg, but the activation was only a tiny bit lower. I don't think any of it makes logical sense tbh.

euro that is hilarious, poor Mr Euro. I got shat on by a bird on an A level biology field trip - at the start of a day out doing something biology related and far far away from bathroom facilities... That kind of memory never leaves you.

Whoever it was who asked, we're off to Skiathos. Can't wait. Just have to get through two part-days at work and no dh until Monday evening... Deep breaths...

Eek Duggs have you got any blood left after all those tests?! I don't know what half of them are.

Talking of blood tests, you've reminded me, I saw my GP the other day. Talked about all the various things I've got going on, got a referral for counselling. She was lovely actually, and was willing to convert prescriptions as and when I'm back on ttc :) . Also, she said to come back in a couple of months for a whole list of blood tests, can't remember what for though (memory useless at the mo). so I'll do that in time to be able to take the results to Mr S.

lemons my numbers were superhigh too and I have had so many cycles where I have felt "pregnant" for a few days but it never amounts to anything. Mr S's treatment for high/very high levels seems to focus on the activation (mine was only borderline) so I wonder if there is something else we should be doing where the numbers are sky high but the activation isn't. Like you, I am on the high protocol.

I think some people have arranged their SO scans locally, so maybe you could do this? The appointments only last 5 mins usually, so it is really not worth such a long trip if you can find an alternative.

free that number would be activation. The other number will probably be in the low hundreds. I think Mr S said up to 200 was normal? I recall mine was 400 and something so well over normal. But my activation was just under 1, so only borderline.

Duggs thanks for the update. That sounds like an impressive raft of tests! I will be very interested to see what comes back. Did you discuss treatment with him if any of them are positive? My concern would be paying for those tests and then being told that the treatment is pred or intralipids. But I will be paying close attention to your outcome. Did he say how quickly the results would be back? I'm wondering whether I should have further investigations before IVF.

choccy it also happened to my massively bird-phobic friend in Stockholm. She had the longest shower EVER when we got back to our hotel. I couldn't laugh at that one though as she was genuinely distressed poor thing.

Slap me with a wet fish now for reading the mail online.... but I found this article which, despite the arresting strapline, is about IVF/NK Cells and intralipids:

www.dailymail.co.uk/health/article-2145697/IVF-couple-baby-joy-woman-drip-fed-egg-soya-oil-stop-body-destroying-embryos.html

PS you gotta love Mail readers - reading some of the comments down below ' she looks too fat to have only eaten eggs and oil' :)

PPS Did have a big chuckle about Mr Euro and the bird poo

Duggs I had a feeling you would have a load of additional tests so hopefully something else will show up. As I said before, I still wonder how much of this is down to bad luck. I would also be interested to know what the treatment plan would be for you. I think he will be our next port of call if my next pregnancy fails!

Waves to everyone else!

First of all congrats to Comedy and Iggi. It brought back lovely memories of when my DS was born. Snoopy I hope you are OK, Duggs I am glad that you are exploring every avenue. Unless someone tells you that you can't have them then you will get their in the end. I had another SO scan on Monday 2 follies (1 shaded so Dr S says it looks like no egg is inside). No follies on left which is a common theme with me now. I asked about Hydroxy as I said that I could see that quite a lot of people were on it on the 'forum'. Dr S said that Hydroxy was for people who had failed on his pred treatment and I said I have failed 4 times. He then sincerely apologised and wrote me a prescription. He said it was due to me transferring from the NHS but when I first saw him privately in Jan I told him the reason why I wanted to see him privately instead of the NHS, etc, which I am sure he detailed back to me in a letter. I asked about selenium and he said it was just another vit and shrugged his shoulders. I asked about the Alpha test and he said that it was really for people trying IVF. Also Elibean mentioned that she did not have an NKC issue bt she did have a phospholipid issue which is the same or similar to me i.e. DR S sent me a letter in 2006 stating that he thought that I have a primary phospholipid issue (not sure how to spell it) but when I mentoned it and showed him the letter from 2006 he said that it was good that I had brought this to his attention and that he would do some more blood tests the next time I get preg (if indeed I do). Lastly he asked about the timing of my AF's and I said before the last one you could time it to a T (about 27 days) but the last AF was about 21 days. Dr S said that unfortunatley that is what medication does sometimes. Louise also explained that most BFP's happen on SO 4 or 5 which is the same as what everyone else on here has been saying. Anyway DS is jumping all over me so gotta dash. Good luck to everyone waiting to test.

Hi ladies yes DH asked what treatment protocol would be it depends on my results but humira, LIT and then intralipids or ivig test on my blood in Chicago to determine what I may need. There were more but because 40mg pred 2x intrallipids and clexane and asprin failed then I need to explore these other avenues ! I am a good case study ladies x

BtW they seem to have a professional "respect" thing going on as he called him Hassan !!!!

free especially loving the mayonnaise comment on the Mail article. Always makes you feel more intelligent and sound of mind when you delve into an daily mail "rant"/ "article•!

..said with the grammar of a 6 yr old! Blaming iPhone and a bottle of rose x

Ah - I see you all mentioning Dr S: I think that is probably the same Dr (H) S who stuck me on his 'trial' nine years ago. It was his idea to 'throw the book at it' in spite of normal range NKC.

I went back to him when we tried for dd2. I always thought of him as a benevolent teddy bear, he made me feel confident when I'd forgotten what the word meant

Its true that the experience stayed with me, though there is no heartache at all now - I feel very lucky. I wish I were a younger Mum, as it took so long to have my girls, but thats about it in terms of regret! But I didn't google - I'm a regular (veteran even) MNer, and happened to read a post in another section where someone mentioned a thread over here that sounded as though it were about the same treatment I went through. I know others' stories helped when I was going through it, so wanted to say hello

FWIW, I also had IVF - and as I spent the last reliably fertile years I had miscarrying, I also had donor eggs. The first time I tried those, I miscarried anyway - so was in a pit of despair by the time I met Mr S. I honestly think that was the darkest time I"d ever experienced, even though I'd been through life threatening illness in my 30s.

Wishing each and every one of you a path through the hard times to your own personal miracles, whatever they may be!

Elibean Thanks so much for sharing your story, it sounds like you had a long and difficult journey to get your happy ending and it gives hope that the same will happen to me/everyone on the thread

Free and Euro Thanks for the advice re Palma. I last went to Majorca when I was 18 (a VERY long time ago) I spent most of my time enjoying the sights & sounds pubs & clubs of Magaluf but I did spend a hungover culture filled day in Palma too. I remember enjoying being inside the cathedral so the sun wasn't exacerbating my hangover!! Oh how times have changed! This time we are off to family friendly Cala D'or. We may well hire a car for a few days so we can explore a bit so thanks for the tips! No room in the suitcase I'm afraid Belly

Duggs Appt sounds productive (as well as expensive ) I hope it comes up with some answers for you.

Choccy Skiathos sounds lovely, not long now Glad to hear that your GP was lovely and supportive.

I'm still resisting testing today at 12dpo. Planning to test Sunday morning before I leave for the airport as long as AF doesn't show up before then!

I'm sure there was more I wanted to say but I can't remember what!

duggs would you go for ivigs? I think I would avoid them but it depends how desperate I get!
elibean thanks for sharing your story, it gives the rest of us hope through the dark times.

I caved in today and did a preg test. I am 10dpo and it's my first cycle of TTC again so not on superov. I have got a faint bfp but not reading anything into it as have had two chemicals this year already. I will test again in a couple of days but expecting not to see a darker line. I know it sounds really negative but I don't want to get my hopes up. Please don't put me on the first trimester list yet as it feels like the kiss of death to me! If I get to six weeks I will go on there! Aghhhhhhhhhhhhhhh!

duggs would you go for ivigs? I think I would avoid them but it depends how desperate I get!
elibean thanks for sharing your story, it gives the rest of us hope through the dark times.

I caved in today and did a preg test. I am 10dpo and it's my first cycle of TTC again so not on superov. I have got a faint bfp but not reading anything into it as have had two chemicals this year already. I will test again in a couple of days but expecting not to see a darker line. I know it sounds really negative but I don't want to get my hopes up. Please don't put me on the first trimester list yet as it feels like the kiss of death to me! If I get to six weeks I will go on there! Aghhhhhhhhhhhhhhh!

Ok sue better than a bfn.but also hearing you. What r u on now that u were not on the last 2 chemicals? There is a test in Chicago that determines whether u would even respond to intrallipids or not. ( I'm guessing not after my latest experience) so if I was told that's what I needed then I would give it a shot. I'm determined to have this all over by the time the adoption process starts in October hence the aggressive/ expensive approach. I'd like my life/body/mind back either way. I'll keep sharing on here.

Huge congratulations igggi! You made it! How is ds now? I hope you're recovering well.

lemon - that is crappy news. So sorry.

Thanks for dropping by and sharing your story elibean. I think everyone appreciates hearing that it can work out.

Skiathos sounds brilliant and exactly what you need, choccy. In case I don't get back on, have a great time.

duggs - I hadn't realised that there was so much more you could be tested for. How long till you get results? Also, I'm trying to imagine how you were saying Mr s's name. Maybe I've been going round getting it wrong too...

free re the birth, obviously you will weigh up all options and decide what's best for you, but I've had 2 induced labours and needed stitches both times and I have to saythat they've healed up really quickly. slight issues with incontinence for a while but that sorts itself out with exercise, and could also be down to me not understanding quite how important pelvic floor exercises are when pregnant! a vb doesn't necessarily mean a mashed-up fanjo.

my phone is doing weird things. going to post now and come back later.

There r a lot more immune tests out there I guess most of us hope the dr s tests and treatment is enough! I have been saying shaaaaaarrrta not sheeta I think or I alternated as I haven't heard people saying it much.

duggs I am now on hydroxy as was only on it for two weeks on the last cp. I am also taking selenium and high dose fish oil tablets plus drinking green tea every day. Everything else is the same. I thought his name was prenounced sheehartah! Glad to hear you have a new plan in action. It makes you feel better when you have a plan! I still think you will get there in the end!

choccy enjoy your holiday!

Elibean that is an amazing story and so glad it had a happy ending for you. I had a sneaky look at your profile as you mention wishing you had had your children younger (but that was of course dependent on the struggle you had) and I think it gives hope to some folk on here who are also in their 40s and worried about that being a factor too. Your girls look beautiful! Am glad it no longer hurts and you are no longer spending long nights googling 'NK cells', 'miscarriage' etc etc like many of us have been doing!

Now.. Sue... A faint BFP huh?! Ok, ok... no excitement from this end and no list adding until 6 weeks as I realise it is very very early. But it is a good sign of potential :)

Maybe I have been getting the name wrong Duggs! I say sheh haaa ta and I thought I heard you say Sheh Heee Ta. Oh no! I won't know what to call him now... I love Elibean's description of a benevolent teddy bear :) I know that some people are struggling on the treatment but overall I am so glad we all found him as he really does have a great success rate and also listens with a sympathetic ear. Like Elibean says, helps to impart confidence when it feels like this is something that has been lost.

Olives I think you will love Mallorca as an adult. Although it must have been fun as a drink-swigging 18 year old too!

Skiathos sounds brilliant and exactly what you need, Choccy. Hope you have a fab holiday.

Coconut it is really good for me to hear positive birth stories like that, so thanks for mentioning. It seems that everyone I have spoken to recently has had lasting differences in their bits and that has really worried me. Plus getting the baby out as quick as pos due to any issues with the placenta having been damaged by the NK cells. I think i was freaked out about a case study in Dr Beer's book who said her placenta was so ropey looking it was passed around the room in awe! But also her baby was fine too.

Has anyone else with thyroid issues heard that babies are more likely to be born back to back? Not sure whether this makes things more complicated for us...? There was some research on it a few years ago:

news.bbc.co.uk/1/hi/health/8425901.stm

Oh no, I am now totally paranoid about how I pronounce Mr Shehata?s name. I have an appointment with him on Monday and it is going to have to be, ?I?m here to see Dr S? or just ?the Doctor?!!

I had my first appointment at St Mary?s this week. I asked to be referred by my NHS consultant because I have always had raised clotting results, but they have never really investigated it properly, just suggested I take aspirin. St Mary?s do seem to be experts in this. Wish I had done this sooner really, but I liked my NHS consultant at the local hospital.

Anyway, I thought some of you TTC-ers might be interested in his opinions. I am reserving judgement until I have gone back to ?the Doctor?, but here is what he said.

First, he said not to take aspirin before BFP as it can interfere with implantation.

Second, he said superovulation would be totally unnecessary for me. (Well I had already decided that ? couldn?t understand why it was recommended when I was getting pregnant after 4-5 month anyway and plus can?t afford the scans). He said that my AMH of 5.8 and FSH of 10 was totally normal, and, if anything, good for someone of my years ? 40!!

Finally, he was not in favour of pred, but I think we all know that anyway!

He also said that because all my other losses have been at just over 11 weeks (ie followed a pattern), and because this last pregnancy had a small gestational sac growing behind the embryo, he thought this one was more likely that this was a chance genetic thing, rather than an underlying problem. So pred would not have made any difference anyway, I guess. Overall it was pretty positive, and I will compare and contrast after my meeting with Dr S on Monday.