TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

Welcome to the thread Comedyworks. I'm so very sorry to hear about your son. What a terrible shock and a heartbreaking experience to go through, and then suffer several miscarriages on top of that. I wish you all the very best of luck with Mr S's treatment programme.

I'm so pleased to hear you are able to get so much cooperation from Mr S with your documentary Freelance, and that you have Digitalgirl on board too. Bringing this treatment to the attention of others could make the world of difference to so many people. Especially as most of us have had to do a hell of a lot of digging and online research to find out what we know now.

I think I'm probably ovulating today but need to wait a couple of hours to do an OPK and then I will probably end up taking my first Pred of this cycle and spend the next two weeks bouncing off the walls imagining symptoms. Still, at least I'm SWI on the right days this time so slightly more chance!

Morning girls.

Comedy I am so sorry to hear about you little boy. I dont know how you manage to pick youreslf up from something so sad in your life and admire your spirit. x

Cheerful I am not on intralipids too. Mr S feels like the Pred 25mg should hopefully be enough. Its only my 4th day of taking it and the side effects that I have experinced is a big bloated tummy, thirsty and just cant go to sleep before midnight and I usually go to bed at 10pm. Not terrible but not v nice. I guess its only for a max of 4 months so its worth it.

Gosh it was hard performing every night for the last 4! I feel like a robot and its just so unsext and unromantic doing it because you know you have too! I reckon thats it for this month!!!

Freelance not long now before you can take a break, let me know how it feels to not be taking them too.

HAve a good day xx

georgie when are you taking your Pred? Take it as early as you can in the morning and it should have less effect on your night's sleep.

Yes, the SWI on demand really does get tedious and puts sex in a whole different light. We are trying to approach it with at least some sort of humour but it's not easy. And it's sod's law that when you have to do it, it always seems like the wrong time. ie. you're hardly home at all or one of you is working long hours or away. I do hope it works this month for me as next month we are due to be in separate counties for most of the dates we need to be together! Also, if my waist line expands any more from this Prednisolone I'd rather it was for a good cause.

Kittens- I take it around 7am every morning. Fingers crossed for you too this month. How many cycles have you done? Much weight gain? I'm worried about putting on weight as I joined weight watchers in January and lost 2 stone and I'm back into my size 10's. I know it's vain but I'm going on our annual beach holiday in 7 weeks and want my bikini to look nice, don't mind big tummy if I am pregnant but do if I am not! X

This will be my 4th cycle. First time it's taken me more than 3 cycles to get pregnant .

I suspect not all the weight gain has to do with Pred, as there have been a lot of indulgences this year (cake, booze etc) but I think I've put on about half a stone in the last 6 months. Some of it may also be due to my last MC being just before Christmas, which meant that I didn't get a chance to loose that little bit of early pregnancy weight. Anyway, I am feeling very lardy at the moment. The biggest I've ever been . I'm pushing 11 stone at the moment and a size 14 in most things, I'd been a 12 for quite a while and around 10 stone 5lb. My stomach is definitely bigger since being on the pred.

Kittens dont worry hon - half a stone is nothing, I can put that on in 2 weeks (really as i am a piggy!) so you have dont really well not to put too much on. My last MC was May and I have stayed same around 1/2 stone more than I should be.

We have had problems in the past actually getting pregnant and i only seem to fall when were not trying or if i have given up so although I will try to stay positive im not really confident. I still feel our age is against us as were both 42.

Yeah, the age thing for me is probably not helping. I am 41 and he's 46.

All I can say with regards to the weight is that I am learning to love jersey dresses! I usually wear high waisted jeans or trousers or dresses with defined waists so I'm struggling with a lot of my clothes at the moment. I am trying to eat healthily for the most part (apart from the wine in the evenings) but I am not much of a one for exercise which I really must do something about!

Hello - first a disclaimer, I'm not on pred, but I am a serial MCer, unfortunately I didn't take get the chance to see Dr S before I left the UK, so I'm now gambling with my next pg, whenever that happens, over here before attempting to find some way to get tested in New Zealand - hence the interest!

I was interested to see the documentary being done by freelancegirl - I just wondered if you get the chance to do follow-up questions, maybe it would be possible to ask..

..if women's levels of NK cells can fluctuate, either through the monthly cycle if they are shed with the lining, or perhaps after MC, etc does it matter WHEN a woman is tested? Does he do repeat testing to get a reading of the level?

Would the level be highest while an untreated woman is actually pregnant or miscarrying? Just wondered whether this has been researched in any way?

and..what, if any, other factors might influence NK cell levels? Are they affected by stress or environmental factors?

Just by the by, I did a bit of stalking on your chart freelance and those 15 high temperatures and a lovely dip on day 9 look quite hopeful to me Did you test? random dizziness, emotional, exhaustion etc may not just be side effects - have my fingers crossed for you in any case.

Oh it?s lovely to have new people join us so we can carry on with our (increasingly geeky) medical ponderings as we try to figure out what has bloody well gone wrong.

Sounds like you don?t need the intralipids George, which is a good thing. Yes it is turing with the SWI! I guess that?s why as a race we were probably not to bother with contraception and take advantage of that early stage in a relationship when you just want to jump each other all the time! Sadly after ten years together it takes some more planning. DH and I managed some good SWI this month but yes we had to do it with some humour. It helps that we both have days when we work from home so we can nip off in the afternoon

How frustrating Kittens that it is taking longer than previously to take prengnat. Am sure psychologically it doesn?t help either ? we know we don?t want to take long to get prengnat as we are a) worried about the hard core drug taking and b) all seem to have an eye on our age. I am 37 in two weeks (36 now of course!!) and DH is a very young looking 48.

I won?t start moaning about my weight again as I am a good 10lbs heavier post mc. The one thing I have in my favour is I have plenty of time to go to the gym so am still pretty fit. A trainer in the gym the other day told me he prefers me like this ? a bit more atheletic looking. So am trying not to beat myself up. But yes, if I am honest, post-mc comforting wine and cake has played a part. Jersey dresses rule! I pulled one out that I really liked today in New Look and it turned out to be maternity? make of that what you will!

Ladybee, thanks so much for joining us! Sorry you are a serial mc-er too. Lovely that you are in NZ! Thanks for the support to with the doc. Digital and I just feel, along with a lot of people, that the subject of miscarriage needs a lot more media attention and we are both working loosely within the industry. It?s a big step for us though so it?s nice to have support! We are covering all kinds of mc though, not just NK cells. If any of you would be up for having your ?journeys followed? too do let us know!

I was looking into that question you posed the other night and I DID find a piece of research online that said NK levels definitely fluctate through the cycle.

Here?s the article:

www.jimmunol.org/content/185/1/756.full

But as far as I am aware no-one checks at different points in the cycle. But then again Mr S checks blood nk cells levels (with just a blood test) and there is a chappie who randomly popped up on the ?recurrent thread? who said they recommended testing actual uterine levels. Although he did say he was a believer that Pred does work. I personally would like to think that my ?top 5%? levels were at a high point of the month rather than a low one!

Secondly when I interviewed him the other day he said the only other sign that someone might have NK cells is 1) having had a previous successful pregnancy during which the body develops a taste for antibodies and 2) having themselves or in the family a history of any autoimmune condition - thyroid (which i have), arthritis, colitis, fybromaliga.... Do you have any of those in the family?

Finally? Ladybee? yes ? my chart. Thanks for being interested! I have had another high temp today and actually, this afternoon, I am not very sure if I might have had a very, very, very faint line on a really crappy cheapie stick. I will have to test again tomorrow morning as I was (having got a negative on DPO11 and 12 (now 15DPO)) I was intending to go off the Pred tomorrow.

I am not keeping my hopes up ? firstly because this almost non-existent line could be wrong and secondly because ? to be brutal ? Mr S has made it clear to me that my levels are very, very high. Interesting night though!

Oops, sorry for my lack of bold! I did it on a word doc first and forgat to add.

Freelance! OMG a BBC faint line?! Oooo come on test again and let us know! That sounds very positive to me! I always find those cheapie tests very accurate. I have my fingers crossed.

Hi Comedy and Ladybee! Great to have some more of us, but obviously not great what you've had to go through.

I'm going to put off trying for another month. I'm not sure if I feel relieved or incredibly frustrated about that. I feel like i've put off an exam or something, I still know it's there, looming. I've had 3 docs tell me to leave it one more month- my gp ( regarding an ear infection) , my gynae ( to give it 6 more weeks on a higher dose of metformin) and my acupuncturist who tells me my 'energy' is low and needs to be upped. I don't feel tired at all but apparently i am drawing on my reserves which is not good. So it will now be early sept before i ovulate after this time and even then it's looking like Dh might be away then. I just want to bloody well get on with it, I think the anticipation of all these drugs and the worry of history repeating is probably a lit worse than the reality. Whinge over.

Anyway, good news is that I can get the intralipids over here and my gynae here is happy for us to follow Dr S's protocol so I don't have to fly back. She's not wholeheartedly enthusiastic about it as she has a few reservations about the nk cell theory but she is open minded. Interestingly she said prednisolone is an old treatment and used to be prescribed years ago for recurrent miscarriages then most gynaes found better things while some endocrinologists continued prescribing it. So she was a bit sniffy about it. (incidentally she thinks it's all caused by my pcos whereas Dr S says my levels are not nearly high enough to be pcos properly anyway). With diet, weight loss and the metformin since January I've pretty much got rid of the pcos according to my latest bloods so that is a relief anyway.

Interesting about the nk cells fluctuating during the cycle. When in your cycle did you get tested and what was your level? My level was 2.11 and 473 and I was 5 days before ovulation.

Morning all,

It's been a hectic morning so far. I did another test when I got up and it does look like it is indeed a positive (!). Feeling weirdly unaffected by it a the moment. But I had to spring into action and leg it down the chemist for the extra Pred (now just taken my first lot of 40mcg), get some Cyclogest (just, er, inserted the first one ) and pick up Omeprazole which apparently will protect the stomach from the huge dose of Pred. Also made an appointment for Mr S - they said they wanted this to be at 6 weeks gestation so I had this weird moment of working out when that will be (25th July - day after my 37th birthday) - I say weird as none of it seems quite real yet. And also I am booked in for Thursday at 10am for my first intralipids!

Congratulations to Ladybee for being such a good chart spotter What was the 'nice looking' dip at 9DPO? It was my first month of actually charting/temping so I had no idea what I was looking for. Digi has told me to back away from the temping now just in case as I could well drive myself mad with any fluctuation.

I think the levels fluctuation thing is really interesting cheerful. My NK cell count was a whopping 3.79 and this was tested on 19th May which was CD7. I THINK from what is says in that very technical article I posted that cell levels were found to be lower after a period, ie that the period also sheds some uterine NK cells. Doesn't bode well for me if mine were that high on CD7! I guess it is because of my very high levels that I am just going to have to take each day as it comes. But I guess this is a step in the right direction, for now.

Great news that you can get the intralipids over there Cheerful too! Another month won't make a huge bit of difference and will give you time to bolster up for this rather scary prospect of being pregnant again!

Bloody hell Freelance, you don't hang around do you?! Congratulations! You'd better get back down to New Look and buy that dress! Maybe it was a sign

I am now dithering about the Sperm Meets Egg Plan thing as it says you're supposed to "try" every day on the 3 days from your first +ve OPK and then leave it a day and "try" again the next day. I don't get the point of that. Surely it will be too late, waiting again 'til 2-3 dpo? I can't decide what to do about tonight now! All this "trying" is getting somewhat trying.

The time distortion is baffling too. I mean, I'm now on my second day of pred and it only feels like yesterday since I stopped my last lot, and yet the next 2 weeks is going to go on for what feels like months! If I do get a BFP it will be just as I am going to France for 5 days for a weekend party, so that would be marvellous timing! Anyway, as my OH says, "First catch your rabbit!"

Facebook was fun yesterday, 2 pregnancy announcements and 2 "why hasn't my baby made an appearance yet?" statuses. Obviously pregnancy announcements don't count as annoyances on here 'cos were all in it together. Just hope I won't be far behind.

I got a call back from Annabelle at St Helier yesterday but she is waiting for the Doctor that I had my follow up call with to get back at the end of the week so it will be next week before I hear anything with regards to more pred supplies for either BFP or whether I am allowed to have a couple more cycles before stopping for a break.

I know, it was a bit of a surprise Kittens. I guess I have felt rather odd down in the uterus and ovary area for a couple of weeks. It's been like I have been having construction work done! A lot of twinges and movement. If it wasn't a BFP I would have been having some interesting thoughts about what else it could be.

I followed the sperm meets egg plan actually but I only ever got a very faint line one day on an ov stick so worked it out from what FF said in relation to my temp. SWI was on day CD8, 10, 11, 12, 13, 14 and 15 just for good measure and FF had me down as ovulating on CD14.

The thing that shocks me about that Facebook announcement thing is that people are so bloody confident that being pregnant means you are having a baby! I can't imagine ever being at that stage.

You know, I was just saying on another thread so excuse me if I repeat myself but, for all my bravado about not really wanting to think about it except take it day by day (and this is the awful thing about pregnancy that ends in miscarriage), the moment you know you are pregnant you start to plan. We just can't help it! Although part of me is really trying not to think about it, the other side is imagining 'what if' it DID all work out ok. I can't help but know what certain dates would mean and what occasions would need planning around. Damn!

I honestly don't feel I should be very optimistic given my really high levels of NK cells. But you know what, I am going to give it a go and see how I get on. Catch your first rabbit indeed.

Intralipids booked for Thursday at 10am at New Life Clinic! 40mcg of Pred and progesterone pessary already taken.

wooohooo Freelance! You did it! You caught your rabbit as Kitten's OH would say! Now you know what all those twinges were about :-).

Kittens - I always thought it was best to get all the spermies in before ovulation so they are all sitting waiting to pounce. I also would have thought 2-3 days after ovulation is too late as from what i've read the egg only lasts 24 hours after ovulation. I suppose it depends how long after the positive OPK, you acutally ovulate. I tend to test 2 or three times a day when I'm due to ovulate, but once it goes positive it stays that way for me for at least 36 - 48 hours. Do you have a regular day of ovulation? Could you plan to DTD everyday a few days before too?

On Fertility friend it scores your chance of getting pregnant based on when you did the deed. If you did it on days 3,2 or 1 BEFORE ovulation or on ovulation day or one day after ovulation it gives you a score. Outside these days it doesn't score you as any chance.

I'm not temping so I can only go by my OPKs for guidance at the moment. I am assuming that OV takes place more or less on the day that there are no longer 2 lines on the OPK. Last month I DTD every day from day 8 until about day 15 but probably OV'd on day 16, by which time we, especially OH had run out of steam, and then wasn't feeling well on day 17 so I decided to start a bit later this month. My OV seems to change monthly, between 14 and 16, but 16 was the most regular so I assumed that was going to be the case. I didn't start testing 'til day 11 and got a +ve OPK straight away so that's when I started DTD, and have done every day since. I think I'm now on day 16, but maybe 15 as my period was so scant last time that I don't know which was the official first day,as you're not supposed to count from the first day if it's just spotting, but mine was pretty much like that all the way through. Anyway, my first day without double lines on the OPK was yesterday so I'm now trying to decide whether to go for it again tonight, or leave a night off and try again tomorrow. Doesn't help that someone from LA (mystery caller) decided to phone my mobile at 3.30am, somehow be surprised not to get an answer and then try again (FFS!) and what with that and the prednisolone it took me a good hour or so to get back to sleep so I suspect by tonight I will be very tired and grumpy and not in the least bit amorous!

I guess if it doesn't work this month I'd better start temping. I'm buggered reading any other signs really as I don't get EWCM at all anymore, even after a bottle of Robitussin/carton or grapefruit juice etc! And I have very small hands so find it quite tricky to reach and suss out what's going on with my cervix. Tricky thing is that sometimes I'm up at 5ish for work and sometimes I'm not up 'til 8.30-9.am. If I start setting my alarm for 5am every morning then not being able to get back to sleep because of the pred, and the cat getting excited because he thinks it's breakfast time that's not going to be very conducive to amorous evenings.

Forgot to say Freelance, yes, I know that feeling of odd sensations. Last time I got a BFP it felt like someone was down in there with a tiny little drill, boreing a hole in my uterus lining.

Fingers crossed for you!

Yes it is really hard trying to juggle everything we need to juggle for ttc! Especially on the Pred. My sleep has been a nightmare too. It's a bloody full time job. I would say definitely have another go tonight for good measure. I think Cheerful is right, it IS perhaps best to front-load, but also drop in a couple of sessions afterwards just to make sure!

I tentatively asked Louise at the clinic whether people do actually have babies with my levels and she said: Yes people do have babies with your levels and you are doing every thing in your power to increase your chances of a successful pregnancy! so hopefully there is some hope...

Freelance that is fantastic news. I have everything crossed for you. You are doing the right thing taking it a day at the time but how exciting! The Cyclogest is it best front or back?! Im just trying to find out as much info as possible and sorry if that is TMI!

Kittens have you tried the clearblue fertility monitor? Its about £60 and test sticks around £12 a packed but it is so good at pinpointing ovulation. I usually SWI on day 9, 11, 13, 14 & 15 by day 16 the monitor goes straight back to low so I know prior is best for us.

Well I am very hungry today and cant stop eating chocolate and scones with lots of jam! Apart from that not much to report from me.

xx

Scones and jam?! Mmmm... I have just been spooning Golden Syrup from the tin Am not having much luck today with work...

Georgie I don't know yet about the front or back thing (how's that for a gear change from scones and jam!) but have been wondering myself. I have heard some people, on Dr Google, say they choose back instead of front as there is less discharge. They also say to take it at night, am guessing so that you are lying down and it has more chance of absorption. I took mine at 10am today as that's when I had just picked it up from the chemist and I wanted to get it in my system straight away. I think I will move to night time tomorrow though. First intralipids on Thursday at 10am. I keep waiting for it all to go wrong, but I guess that concern is to be expected. Am a bit dizzy and weird today but not sure whether that's the drugs, the lack of sleep, the early pregnancy symptoms or just spending too much time looking at a screen! Lots more strange feelings down below though, have to try not to mental about them as there really is nothing I can do.

I have a Persona monitor but the sticks are so expensive. I'm using the internet cheapo opinion sticks and they give me a fairly good idea at about 25p a day.

I'm really hungry too and constantly needing a wee. Both not ideal as I am at RSPCA vet with a 2-3 hr waiting time and didn't get a chance to get lunch beforehand. Also have horrendous heartburn and no Gaviscon

freelance just remember with regards to weird feeling down there,there is stuff going on in there. Not necessarily bad stuff either. I know it's hard not to feel negative or anxious but twinges are to be expected for the right reasons too!

Thanks Kittens, that makes me feel a bit better. I guess having not had a successful pregnancy before I only have non-successful ones to recall so I don't really know what is normal. I am sure pregnancy after miscarriages has exactly the same mentalling potential whether you already have children or not, but having no good frame of reference doesn't help either!

You are an RSPCA vet or you are at one? Either way, how wonderful! Although less wonderful not being able to go to the loo...

Whereabouts are you all in your cycles?

I'm at the vet with my cat for a 6 month check up after diagnosis of early kidney disease. I'm sat waiting in my car so he doesn't have to be surrounded by Staffys!I myself am a make up artist rather than a vet.

I am currently playing space invaders with my egg, so CD16 now.

I've had 2 pgs that got to 12 wks/Nuchal Scan stage so I know about all the odd twinges you can expect from normal pregnancy. There are plenty, trust me!

Ahh, poor cat. I do love cats. And I hate Staffy's. Grrr. Why do people always have to have Staffy's off a lead? You rarely see, say, a Lab off a lead walking down the road.

Did you lose the pregnancies after having a successful scan at 12 weeks or find out at that stage you had lost them? I got to two days before my 12 week scan last time but it has been a mmc at 7 weeks.