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!

Willitbe, I've just sent you a private message to see if you are around. Sorry for the drop in everyone, am mid edit x

Hi all - I have a general prednisolone question please. I am in the middle of weening off the steroids (was on 25mg) and am now on 10mg a day. I am noticing that my psoriasis is coming back on my elbows worse luck and its got me a bit paranoid about coming off the pred.

Can anyone reassure me as to why it is protocol to come off the pred at 12 weeks? What happens then that the steroids are no longer needed? And if it is the placate taking over, how does that work exactly? I did know this at some point I am sure, but I can't remember. Any reassurance would be greatly appreciated. I just need to understand how my baby is still safe even though I am coming off it.

Free I was going to ask you how the edit is going for the film. I am no longer on Facebook or I would have inboxed you on there. Would be great to know how its all going. :-) x

Hi tum don't quote me on any of this, it's just what I've picked up, so others can feel free to correct me.

The placenta is fully formed by the end of first trimester and from then on the maternal and foetal circulations are essentially separated, though nutrition is provided through the umbilical cord. The bit about developing tolerance to the foetus is done.
Steroids in 2nd trimester can be detrimental to development of sex characteristics in the foetus because that requires them to produce their own steroid based hormones.

I know it feels scary to wean off when you feel like your success is attributable to the steroids, but you'll be ok under your own steam. The hardest bit is already done.

Just to report I had 28 week growth scan today and all looking good. Head and abdominal circumferences bang on, femurs short, but they were at 20 weeks and have grown the appropriate amount to stay on same centile so they are not worried. She has inherited short legs from Grandad....

Hi Tum - I remember asking Mr S this very question as I was extremely nervous about weaning off them and from what I can recall Mr S said that being on steroids for too long can cause you to go into early labour and that is why it is best to start weaning off them and also the placenta is fully formed at this stage. That reassured me that weaning off was definitely the best thing. The steroids have done their job and you will be fine .

Lovely and reassuring scan news [baking]

baking, lovely news. My DS's legs were also short on the scans (25th centile, head 95th) but he has lovely long legs now!

Brownstag the FSH doesn't sound too bad and it can change from month to month can't it? I had mine done in Oct last year and it was 6.5 but 2.5 years before that it was 9.5. So somehow improved even though I was older..

I have moved my scan forward a week as I don't think I can wait it out so will have one early next week. I am sure that this one is not going to work, although whether it straggles on for a bit or whether it's already died, I don't know..

Baking that's great news!! Wow 28 weeks! Not long to go!!

Charlie try and stay positive! I know it's hard! I've realised that when you know you just know! But I do hope you are pleasantly surprised!

Luna I hope today goes well! And I hope he doesn't say to no the treatment that you want!!

Waves to everyone!
Xx

Loved reading about Choccy's birth news and Tum's success with the Doppler! Baking, wonderful scan news too.

Team how did your NHS appointment on Monday go?

Village Monday went well! Consultant measured me the same! Ahead like they did at my twelve week scan! She said with all due respect to Dr S these girls do it day in day out! She told me not to worry!

So I went and got a Doppler too! And it's brilliant! But I'm not allowed to use it when DH is away!!

How are you?? Is the two week wait nearly over yet??

Xx

Team great news
Charlie I hope it's positive for you
Good luck luna
Waves to all x
I've to stop all meds at last so next cycle I think I'll test then stop cyclogest and see where that gets me, never wished af to come so much!!

Team great news.

Charlie thinking of you, hope it all goes well.

Am stressing out because I haven't got that brown line on my tummy I had with DD and keep worrying about what that might mean. Am 20 weeks, so part of me is thinking, half-way there, and the other part is being a stress monkey.

Well I am pretty sure I have started miscarrying - blood and cramps so not looking good. But on the other hand at least if it's not going to work, hopefully it will happen naturally and as quickly as poss so I can move on. This time it doesn't feel nearly as bad - I'm not sure if it's because I'm earlier on or because I've now got a DS or because it hasn't hit me yet.

pixiemoo I never got one of those brown lines - is it something to do with the skin stretching? Maybe your skin is less stretched this time because it's used to it after the previous bump??

So sorry to hear this Charlie :( x

Loving all the good news on here at the moment but sorry to hear it seems like a miscarriage this time Charlie. I felt the same after my recent one - upset of course but not as devastated as previous ones. Maybe because I have DS too and also as it was an accidental pregnancy. I am sure if it happens again I will be devastated. It's frustrating though as it sets you back a few months.

Remind me again why you can't take steroids Charlie? Not that they are the be all and end all as you managed to have DS with just intralipids. If you were in the uk I would suggest going to see Mr S and seeing about other treatment such as hydroxy. But of course it could just be one of those other, non nk mcs like it turns out I had.

I found out the other day my recent mc was a trisomy 22. Very common apparently. A boy. It's weird to find out.

I suppose I probably could take steroids Free but I am so cautious of taking medication. I had epilepsy so always concerned about anything that could set it off, especially as I'm off epilepsy medication. I wouldn't rule them out completely but as I'm 'only' 35 then I'm willing to try a couple more times before going on to steroids etc.

I was looking at DS this morning and (soppily) thinking they are so incredibly perfect that it's not surprising it takes several failed goes to get one. It just seems incredible that lots of people actually can just get pregnant and have perfect baby after perfect baby really!

Weird to find out the sex of a MC I can imagine but reassuring to know it wasn't a NKC problem?

Hello Ladies

May I join? I posted on the RM thread and was suggested to ask my question here as well.

Just going through my 2nd consecutive mc. Have a straightforward pregnancy first time around and have a five year old DS who I conceived on first go.

We started ttc-ing one year ago. I conceived after 3 months, but miscarriaged at 5+3 in June 2013 (natural miscarriage). I was unable to conceive straight away after this first miscarriage and began to panick by January (7-8 months onwards) and got a range of tests, bloods, hycosy scan etc done this February which came up with nothing. I had a surprise natural BFP soon after these tests were completed in February. As I was at the fertility clinic for my tests, they were able to monitor my blood hcg levels from when I got my BFP and they did not rise optimally and I was told at 5 weeks that the pregnancy is not viable. Scan done on monday at 5+5 shows sac but no embryo. I am now beginning to miscarry naturally (at 6 weeks).

So both my miscarriages have been very early and natural so far. I don't think I will be able to get any testing done.

Before we start to TTC again, I would like to get some tests done to ensure that my next pregnancy fx is a sticky one. I will probably go the mainstream route of R. Rai / Lesley Regan, but at the same time wish to explore more on the natural killer cells. I am therefore undecided about whether to see Professor Quenby or Dr. Sh. who seem to be prominent in this area. At the moment my feeling is to first see Professor Quenby and try her protocol first and if that fails perhaps see Dr. S? At the same time I am very keen to kick start things now and I think Dr. S would probably see me soon after my miscarriage is complete, unlike Professor Q who as I understand requires me to wait for my first normal period (so probably at least 4-5 weeks wait of a minimum).

For those who have seen Dr. S - I would be very interested to hear of your experience and success stories. Also how do you feel about taking pred. and any other immune therapy. What kind of side effects have you experienced?

Thank you for reading

Hi All,

Just spent last hour catching up on everyone's news. Have been away for work and then had my appointment with Mr S yesterday. So much has happened to you all over one week.

Village glad the eye test went well and that all was clear. I found it very reassuring and it's great that now your optician has a base picture of your eyes, there is something to compare every future test to. How's the 2WW going - are you nearly at the end?

Duggs I hope that you appointment goes well today

Choccy amazing news and HUGE congratulations to you and your DH

Tum how's the doppler working out? How often do you find yourself using it?

Ari I was interested by your comment re Omeprozole as I was on it for last pregnancy and supposed to take it again if I get a BFP. Is there a reason you don't take it?

Baking great scan news - so happy for you

Charlie I hope that you're doing ok today and not it too much pain. I also hope that you have support where ever you are - was it somewhere int he Middle East?

Team great news re Monday scan and I hope that the doppler has helped to reassure you

Free I know exactly what you mean about learning the sex of the baby following an mc. I find it strange (surreal even) to think that I would have had a daughter.

My appointment went well with Mr S overall and he basically said that as I am on the highest dose of everything, the only thing left to try is IVIG rather than intralipids. He definitely tried to 'put me in my place' by telling me that he won't let his patients dictate the course of treatment they want and it is up to him to decide what someone takes. Had to bite my tongue from reminding him that he wouldn't have patients to treat if we weren't going through such awful experiences, but I'm obviously not a good actress as something in my face must have given my thoughts away as he said that he had no problem if I wanted to be treated elsewhere. Grrrr that man is so frustrating but we really need his help and Team's story inspired me to persevere so are going to try IVIG once we get another BFP (fingers crossed it's soon).

Apologies for long ramble - waves to all xxx

Hi Triple sorry you find yourself here but it's definitely the right place for support and information.

I started with Prof Q on her protocol which didn't work for us (admittedly only tried once) but I know that it has worked for others on here.

I am now with Mr S who's usual routine is to run a load of blood samples to see what your NK Cell levels are. Based on the results he'll then put together a protocol to suit. I am sure he too will ask you to wait until you have had a natural cycle before trying again - this is what I have had to do.
Re Pred side effects - some of the ladies on here have experienced things whilst others haven't so I think it is quite individual. I personally had insomnia (usually waking around 3am) and also bloating and weight gain. My skin was more sensitive but that's about it. For me personally I keep thinking of the end result (see Choccy's lovely news in an earlier post) and the great successes which there are lots of on this thread which help me through and keep me going.

Good luck with everything

charlie I'm sorry it is not looking good

triple hello again, glad you decided to post! My experience of being on pred was I had some side effects but nothing that wasn't worthwhile since it worked. Main things were I was v hungry so I put on weight despite being careful what I ate, insomnia and heavy/weak limbs. I was on 20mg from BFP-10 weeks then weaning off by 12 weeks which is quite a conservative protocol, Dr S often has people on pred all the time or from ovulation and higher doses. There is an increased but still small risk of cleft lip and palate in the baby and increased risk of small birthweight. Lip and palate were fine at my 20 week scan and I'm having additional growth scans to keep an eye on weight, but all good so far.

baking, I didn't know about the increased risk of low birthweight. My DS was 6lb, not quite low birthweight but surprisingly small for babies in our families and considering he was born at 38 + 2.
Triple, I would echo what Baking says. Very difficult not to pile on the pounds. Voracious greed.
Also, and I don't want to scare anyone, but I have had to start wearing a wig in the last 2 weeks. I don't know whether it is the hormonal rollercoaster I've been on for the last few years, the DHEA, the steroids, stress, being perimenopausal or all of the above, but I just have very little of my own hair left. And yet I'm surprisingly unbothered by it, if it gets me a baby at the end of it. But I think it is a factor in my feeling that when I hit 43, it may be time to stop ttc.
Sorry to hear about the bleeding, Charlie. I hope you're wrong. I agree that having one child already does seem to insulate you somewhat against the full desperation of misery, but it's still very tough.

Well there's no chance that wasn't a MC today...

Triple I was in a sort of similar position to you in that I only had 2 MCs before seeing Dr S. My MCs had got to at least 10 weeks each time, one discovered at 13 week scan. Unlike you though, I hadn't had a child at all then.
I had 'very high' NKCs but nothing else really other than a bit of PCOS which I already knew about. After a lot of deliberation, I decided to just go for intralipids and not take the steroids. (I also took metformin for the PCOS). The intralipids have no side effects and much kinder to your body than the steroids. I presume they might not be as effective but I had Very High NKCs and I still managed to be successful on my first go with them and resulted in my little 19 months old energy ball which is currently jumping all over me and trying to 'help' me write this. I am just going through another MC (first since DS) at about 8 weeks - I did exactly the same treatment as last time (also had acupuncture as last time) but this time not successful. At the end of the day if you get an embryo with a genetic defect nothing is going to work unfortunately. (I am just hoping that's what it was this time).

Brownstag - sorry to hear about your hair. Can't hairloss also something to do with autoimmune problems? Or a thyroid problem?

Thank you for all the information brownstag, bakingtins, luna . This is very helpful indeed. The appetite part I could deal with, but hair loss brownstag seems a bit worrying. The reason being that I already lose a lot of hair (undiagnosed) in clumps, though thankfully I don't have any bald spots yet. It seems to run in the family because my mum had thinning of hair in her early 50s and now there are areas where her scalp is pretty bare. I have heard about DHEA causing hair loss too. As you say though perhaps it depends on how long we use the medication and pred. for.

sorry to hear your news cheerful. i hope you are able to recover soon. That is quite interesting about just trying out with intrallipids rather than pred. I thought Dr. S would not consider any treatment without pred or was he accepting of your decision to only try the intrallipids?

Do we use the intrallipids/preds at the time of each cycle or do they need to be used for some time before starting to ttc? How long do you need to remain on the treatment after bfp?

how long has it taken most people to get preg using one of these treatments? It took me 8 months between my first and second miscarriage this time and that makes me worry whether I need additional support to get pregnant as well. Before I got my surprise bfp this feb - the fertility clinic I have visited had recommended an IUI cycle with superovulation (clomid).
I guess I will start reading Dr. Beers book and wait for my first period and then make up my mind on what to do. Is it relatively easy to get an appointment with Dr. S?

Thanks again.

CHarlie so sorry to hear that.

Maybe it's worth seeing if Mr S would do a phone/Skype consultation? If you don't want to have steroids he might try you on Hydroxy for the next one?

HI Triple welcome to the thread. It seems to be variable on here as to how long people have taken to get pregnant - depending on the usual things like age and egg quality and also just mimicking the general population. Some people get pregnant every try and others struggle. I know Mr S has a super ovulation programme for people who are struggling but haven't read into that much yet. For what it is worth I would go straight to Mr S every time, I was also seen at St Mary's but they didn't find anything.

I am with the rest of them re side effects - hunger, weight gain and (after being on 40mg for a few weeks and therefore pregnant - moon face.). It's not so bad if you are only on them for a short period of time. After about ten days on 25mg I start to feel a bit manic in short bursts. Lots of energy but not always good energy. Sometimes good energy though! Either way they are not too hideous.

My Pred baby was a whopper - 8.11lbs at a week early and has always measured around 90% in terms of weight and height.

freelance thanks. I understand then that the pred /intrallipids treatment is more to help you stay pregnant and will not necessarily speed up the getting pregnant part.

Seems like side effects vary from person to person. Dud you start seeing the side effects after done time or do they appear fairly soon after you start using the drugs?

What is hydroxy?