TTC/ pregnancy on Prednisolone or similar part 2

[Arianrhod]

Starting up part 2 of this thread since the old one closed at 1000 posts!

iggi lots of luck for today, hope it's nothing - I know it doesn't help but I know lots of women have spotting and/or bleeding in pregnancy and it still goes ok. Definitely call the EPU, get scanned - it's worth it, honestly, at least you will know one way or another. Virtual hugs coming your way.

free I also started AF properly this morning, so looks like we may be both importuning a friendly witch for a good fertility spell on Hallowe'en? I know exactly what you mean about the scary stuff ... a small part of me was actually sort of relieved when I didn't get a BFP purely because it means I don't have to go through the whole worrying about miscarrying all over again. Bizarre, but there it is.

[freelancegirl]

Just wanted to say hello as the resident thread alcoholic... been out drinking all weekend and feeling rough and a bit anxious and emotional for it. Which is quite unlike me as I am normally a cheery little soul. Glad all you pregnant folk are doing well physically if not quite being the most optimistic bunch in the box emotionally! It's the physical that is important, right?

I am on countdown to TTC. Going away for a couple of days and think I will start when I get back on CD9 and carry on until CD19, should that do it? I was thinking starting the Pred on CD16. Not sure if I can be arsed to temp.

[snoopygirl]

Hi all,
Hope you don't mind me butting in just wanted to ask a question really. I am just about to start taking the pred plus intralipids (IF successful) next month for the first time. I was wondering about how critical it is as to when intralipids are taken. I know it sounds like I'm expecting to automatically get a BFP but I have booked to go away for Christmas from 15th Dec and IF i did get preg I need to think about fitting Intralipids in around that. I think I can just about manage it but it may be couple of days early or late.
I realise that leaving it longer than a week isn't good but it shouldn't be that long. Dr S told me the other day "don't even try to conceive if you are not in country to take Intralipids" which I understand as spending all this money out I don't want to risk screwing it up and I'm sure he likes to keep his sucess rate up!
Surely as it's a busy clinic you don't always get an appointment exactly when you want anyway?
thanks in advance for any advice

[Arianrhod]

Morning all ... welcome snoopy, I can't answer your intralipid question as I haven't had them yet, but othes will no doubt be along shortly who can answer your question.

Virtual hugs to all you pregnant ladies, totally understand your fears and keeping everything crossed that all are groundless this time around!

free 10 days solid BDing should definitely cover all possibilities, I would have thought! I have to say, CD8 myself last night and thinking "will I wear OH out if we DTD now, got to keep him 'fresh' for next week" Now I know all the romance has gone out of the situation!! :) Temping always seems like too much hard work for me, I can just about cope with the trusty CBFM (and backup digi OPKs), don't think I'd manage the thermometer as well! Do you know when you OV, roughly? I know I'll be starting mine CD14/15), yuck, not looking forward to it and it's only my second go at it! Omeprazole from OV as well this time, which also makes me a bit nervous as I saw what it did to my ex-hubby when he had to take it for a while - he put on weight like he was stuffing deep fried Mars Bars every minute of the day, and it was just the Omeprazole! Hoping it doesn't have that effect on me ...

/waves to everyone, hope your Tuesday has started out bright and sunny!

[ChoccyPud]

Morning all!

Hi Snoopy. I can't answer your question but I will say that when for about 5 mins last month Louise was talking to me about Intralipids there didn't seem to be any problem getting in the following working day had it been necessary. That was in a kind of panicked situation though.

If you test from 10dpo, you can up the Pred if you need to as early as possible, so an early BFP would also give you early notice of needing intralipids thus presumably more flexibility in an appointment. I must say I'd want to get in for intralipids sooner rather than later, but I have v high NKCs so I want to bash the little g*ts asafp and as hard as I can!

I'm back to thinking about ttc... I've got some ov sticks left from last month. I usually go by cm but needed a guide last month as I had no idea when I'd be back online! CD6 today so time for fun before getting back to calling it swi from Friday. I also think I might keep using ov sticks as they mean you need only start on the Pred on smiley face day rather than guessing actual ov day. Given that paranoid old me will keep on the Pred until day 14 + BFN I'd rather not start taking it earlier than necessary.

Onwards and upwards! [hgrin]

[freelancegirl]

Hi Snoopy! Welcome to the thread. Do feel free to stick around. I have had one intralipids treatment (it is very surreal having a drip for no proper reason iykwim) but I am probably not the best example as I also had another mc on my first round of treatment. I have silly-high NK cells of 3.79 which I think had something to do with it. But I think a couple of days on either side is not going to be a problem as surely we don't really know exactly when we implant...? You're going away on the 15th Dec, based on when you ovulate what day would you be likely to know whether you have a BFP?

I have a similar issue with going away at Xmas myself actually and I must work out the proposed dates to see if they would interfere with the intralipids! He has told me that if I get pregnant he doesn't want me to go too far away from him. I was thinking of the Red Sea as it is hot and is only 4-5 hours flight away. I really want some sunshine! But I am waiting until I have to test next month (start SWI next week - isn't it romantic ) and then we are going to book. Taking a chance it will be very expensive I guess.

Hi Ari when are you going to start then...? I think I started on CD8 last time, but I did go at it for rather a long time :) I think I ovulate around CD14 but it could be anything up for CD18. The only time I really took note of it was last time I got pregnant so there was a lot of twinges and symptoms that can be put down to implantation etc rather than ovulation. But FF told me I ovulated at CD14. There was some confusion as to whether it might be later as my one and only chart was tri-phasic - ie it went up a second time - and then the growth on the sac was smaller then expected. Digi who is the fountain of all TTC knowledge as far as I am concerned - thought I might have ovulated later than FF had me down. But who knows considering the sac never grew. So anytime between CD14 and CD18 it is.

OOh I didn't know the Omeprazole lead to puffy face as well. Have you seen my moonface video...? I am just now starting to feel more lithe again and can't believe I have to go on the steroids again in a weeks time. I've decided next Weds is Pred day - CD16. I realise that might be two days after I ovulate but it also might be two days before I ovulate!! I guess like with the untralipids it is not an exact science.

[freelancegirl]

Actually Snoopy I have just worked out that if I do get pregnant this cycle I will actually be away this time when I get a BFP as I am going to the US for my brother's birthday on the 12th! It means I could get a BFP and then not be home until 5 days after.

[Coconutfeet]

Hi Snoopy - They do seem to be able to fit people in at New Life very quickly, certainly within a day or so. Would it be worth checking with Louise to see what she thinks? It would be awful if missing out by a day or two made all the difference to the outcome.

Comedy - I wondered about the link between working with kids and having high NK cells too! Maybe we should suggest it to Mr S as an interesting research paper.

Free - sorry to hear you're feeling rough. Hope you feel better soon. Are you sure the anxiety isn't related to the medication as well? I would have thought that 10 days of solid SWIing should cover all your bases. Your dp's going to be worn out though! Have your cycles got back to normal now, post mc?

[Arianrhod]

free Well going on what FF said was my "fertile" time generally I start swi (rather than just for fun) 2-3 days before OV is due, then the 2 'peak' days of OV, plus the following day just for luck. So I guess 6 days in a row, for TTC purposes - but I don't tell OH it's 'that time' otherwise I suspect he'd feel under pressure! :) He seems rather clueless as to my cycle anyway (but I guess why would he know, being a bloke and all that) so I don't think he's ever been any the wiser :)

I don't think Omeprazole leads to moon face, no, it just made my ex put on weight like it was going out of fashion. But I'm hoping it was just he had a bad reaction to it, I've not heard anyone else on here mention it - mind you, I suppose others are taking it alongside the higher dose of Pred, which in itself leads to weight gain, so perhaps they wouldn't know?

Uh oh ... I just quickly consulted Dr Google and yes indeed, one of the main side effects of Omeprazole is weight gain! (for eg. see experience.patient.co.uk/discussion.php?t=30107 ) So what chance do we have, being on both Omeprazole and Pred??!!

[freelancegirl]

Agggh! That is a nightmare!! I never knew that was a side effect of the Omeprazole. Bummer. I have a week on just the Hydroxy left so hopefully that will make me a bit thinner before pumping myself with drugs again. I don't mind putting on weight if I am to have a baby, it's just putting on weight and then miscarrying and struggle to lose it is a real bummer. I am off to stay with my 96 year old Nan for a couple of days too, which basically means a white bread, cake and biscuits fest.

[scooterchaser]

Man this thread moves quick!

Comedy I can't believe after what you've been through, a doctor had the nerve to speak to you like that, I mean do they actually HAVE any training? I read back and broke my heart to hear about your son. I really hope you can find a GP who will give you all the time and TLC you need.

After being messed around to the point of despair, I changed to a new doctor who gave me a fifty minute(!) appointment the first time I went. So these people do exist I promise! That said, I have just had a unhelpful phone conversation with one of the St Helier people....so its swings and roundabouts isn't it.

coconut I taught Reception/Year 1 most recently (PPA cover this year) but taking a break for this term and these days making novelty birthday cakes! DH is abroad a lot at this time of year and I just decided I would rather be penniless than continue to juggle everything by myself.

So my conversation this morning was a weird one. I was told to call in with the BFP which I did and then I asked about my pre-steroid NK results because I had been ill with recurrent throat infections in August and I thought the October figures might be lower than the July ones. The midwife wasn't keen on giving me figures but did eventually look them up.

Turns out that my NK count and activity levels have increased in the period of time before starting the pred. Wasn't expecting that. Anyone else had this?

So I asked, am I on the right level of pred then or should it be higher? The midwife then says to me, right this is why we don't normally talk to you about results and sounds a bit shirty about it. She told me 'I will leave your November 28th appointment in with Dr S and you can talk to him about it then.' Hang on a minute, I will be 9 weeks if I get that far....and possibly have got that far on the wrong dose! I asked to speak to any member of his team and she explained how they are all in clinics and the only one I could speak to has to rush off straight away. My heart sank because here I am up against the same old administrative hurdles again and I really thought being in the Dr S system was going to change everything. I finally ask if someone from the team could possibly just check my levels and give me a call to reassure me that I am on the right treatment programme. She agreed to this - but I know tomorrow I'll be waiting and waiting for the phone to ring and might as well just badger them again.

Its not rocket science, all I want is the best chance for this pregnancy and someone to understand that these little questions are really really important to me. I have thought about nothing else all day.

I am on 25mg pred atm. Can anyone tell me that NK count and activation level threshold for taking 40mg? I thought I might get some better advice round here and help hold off the panic!!!!

Sorry for the indulgent post :(

[freelancegirl]

HI Scooter just a quickie as I am on my way out but I thought 'very high' was anything over 1.8 or 2.0 was it...? Mine are 3.79 so I know they were in the very high count. I think I have actually heard of some people's levels going up after taking Pred - maybe on another forum. I haven't heard of many people having them re-checked though. Are you seeing him privately or NHS? Just wondering if there is a difference and privately he doesn't get you to have more tests unless you want them.

Sorry it is a pain, it is the last thing you need I am sure.

[freelancegirl]

Oh and I mean with 'very high' that's when he does 40mg/intralipids.

[Arianrhod]

scooter is this seeing Mr S on the NHS or privately? Not that it should make ANY difference, but I just wondered?

The "very high" NK cells treatment programme kicks in when your NK cell count (activation count? I think, I don't have my results here) goes over 0.8. Mine was 0.83, so I fall into the "very high" category (although nowhere near as high as some, like free for example). I will be on 40mg pred from BFP for that, 25mg up to that point.

Do you know what your new levels are? There's a different treatment protocol I understand with Mr S depending on whether you're high or very high - you can actually look at the treatment plans for each level of NK cell count by logging into his website, you should have been given the password when you were first given the treatment plan?

Hope that helps a bit, and I'm very surprised you met with the attitude you did - surely they prefer their 'patients' to be informed than ignorant?

[Arianrhod]

argh - I meant over 1.8, not 0.8 ... sorry ... :)

[Arianrhod]

Ahem and of course, that my NK count was 1.83 and not 0.83. You knew that was what I meant, right? :)

[scooterchaser]

thanks free both the NK count and NK activation level have gone over 2 now. Think she said 2.5 for one of the figures, but she was vague and didn't want to give me too much information. When I was recommended for treatment back in July, my NK count was ok but activation levels were 1.37, a treatable level apparently.

At my last appointment with Dr S's colleague, I got given one blood test form for NK levels to be taken when starting the pred and another for either post-steroids or at BFP (I have just gone in for this one). It seemed standard procedure (I am NHS) but they don't really seem to have a system for checking these results to see if anything has changed significantly so I guess that's down to me now!

[scooterchaser]

Thanks ari too. I will definitely get on to them tomorrow, its all such a minefield of numbers isn't it!

[Arianrhod]

Well that's interesting, seeing him privately he doesn't seem to do follow-up blood tests to see if the NK levels have changed - or at least, he didn't tell me about it!

Then you're now into the "very high" range scooter, so presumably your treatment protocol should now change to 40mg pred and presumably intralipids as well? Definitely talk to them tomorrow, you need to find out what you should be doing now. Good luck!!

[snoopygirl]

Hi

Thanks for all info ladies. I don't know why but when reading ur replies suddenly cr*ping myself - think it's just dawning on me what I'm about to embark on.
Scooter - I got my results from Dr S last Friday morning and he wrote down the following: 0.8 -0.99 borderline, 1 -1.8 High, over 1.8 V.high. My count was 3.16 so on a BFP 40mg pred is my prescription.

I have been so positive and lookin forward to starting but think I'm gettin a bit over confident and carrried away with all sucess stories. I am 42 at the end of the day so my chances are dwindling and had 5 m/c's already.

Free I am going to Florida 15th - 31st. Well meant to be! If 1st cycle worked then I would be able to get a preg reading around middle Nov so plenty of time to have drip then plus 6 week scan would be just before we go and 8 week drip would be due a couple of days before we come back. Well that's dependent on if AF comes at date i think it will. aaghh!

But I think I will call Louise anyway. If she says don't go or something then will have to hold of the treatment until Dec. I just want to get on with it now though - every month is time running out for me.

[ChoccyPud]

Scooter my NK count is 247.1 and activation is 2.11 so I'm v high too (not up to free's standard but hey!). Anything over 1.8 is v high according to Mr S's notes on my results. The treatment plan is therefore 25mg Pred from ov then 40 from BFP. Plus intralipids and all the other stuff. He keeps tweaking the treatment programme but it's available on the website as Ari said.

Def get onto them to push for confirmation and intralipids appointment if you need one but if all else fails try speaking to someone at New Life instead. Sorry you seem to be getting the brush off, it hardly helps does it?!

I had some more blood taken when I went for my bp and general check after a couple of cycles of Pred but I think that was for liver function not another NK count which I hadn't heard of before either. Maybe they do it for non-very-high people in case you need to go to higher doses?

[Arianrhod]

One step at a time snoopy ... and given that I'm 44 in just over 2 months time (and still trying!), you're a mere spring chicken ..

Seriously though, yep it's somewhat overwhelming what we're all trying to do, but I'm trying not to think of it all at once, just get as clued-up as I possibly can and then just focus on the day-to-day side of it. So, today I'm CD8, I don't do anything so don't worry about it. In a couple of days I'll have to start CBFM testing and making sure I'm DTD at appropriate intervals, and that's all I'm worrying about then. Then OV, start pred (and supposedly omeprazole although you know, I think a healthy dose of Gaviscon now and again might be in order instead!!), and that's all I'll worry about at that time. And so on, and so on.

If I start thinking about high dose pred, progesterone, intralipids, scans, and then having to possibly face my fourth MC this year, etc etc, I think I'd go quietly insane. So I won't, until I have to actually do them. Or I'll try not to, anyway!

The planning is a bugger, I'll grant you - but again, worry about it when you get to it! :)

[ChoccyPud]

Sorry, Snoopy only just saw your post. Nothing wrong with positive thinking! The way I look at it is nothing in the Pred treatment will help me actually conceive; that's all still down to me. Also nothing in it prevents all the other things that could go wrong eg chromosomal problems. What it does do is hopefully damp down those nasty killer cells enough so they don't zap the pg. So, you're doing all you can, and that's the thing to keep in mind. :)

[ChoccyPud]

And wot Ari said

[Havingkittens]

Hello there, been lurking but not really feeling up to posting recently as I've been feeling pretty miserable and my head is a bit all over the place at the moment, so have been mostly sticking to the frivolous threads.

I had an appointment with Dr S's Clinic (NHS) today. I guess he is away for half term or something as I saw a colleague of his who was very nice. Not a great deal happened but she said she would write to my GP to suggest he refers me to the fertility clinic at St Helier. She didn't think there was a problem as my last Day 21 test results looked fine to her but she said, because of my age, it was best to get me into the system asap just in case they feel they need to give me anything to stimulate my fertility. She did say that I should be checking my blood pressure regularly whilst on the steroids, which Dr S only said I need do once I'm on them in pregnancy - ie. for longer than 2 weeks at a time. She also sent me for another blood test to check my NK Cell levels again as they've not been checked since March. She wanted to see if there had been any change.

I've not seen anyone else mention being re-tested, although most of you who have been seeing him privately have not been on them for as long as I have without getting pregnant as far as I can remember, so I don't know if they are inclined to check after, say, 6+ months.

Scooter, although she sounded shirty to you, I suppose maybe the lady you spoke to had a reason for saying what she did. I suspect that may also have a lot to do with why Dr S asked FF to remove any posts discussing his treatment as he doesn't want people coming up with their own theories on what he should be doing for them. I know it's frustrating not feeling in control of the treatment we are receiving but if you put yourself in their shoes, if she regularly has people questioning their protocol when perhaps there is no need her exasperation could well make her come across a bit terse.

Iggi I did ask the lady I saw today about having my scans (if and when I ever need them) at my local hospital and whether she could write a letter to them recommending the regular 2 weekly scans and she said that was not a problem, so it could be worth you contacting Dr S's office.

[Coconutfeet]

Oi, watch it, I've just turned 44, so can beat all of you I think! [hwink]

Scooter - I've got very high activation of killer cells rather than a high count ( 0.8-0.99 is borderline, 1-1.8 is high, above 1.8 is v high). Very high being the point you need 40mg of pred and intralipids. I can completely understand why you need to get this sorted ASAP. You definitely need to talk to someone to put your mind at rest.

Kittens - Sorry you're feeling rubbish. I can't help with the retesting question, I'm afraid. He didn't mention it to me at all. Hopefully someone else will come back with something.

I've just realised that I haven't actually taken my omeprazole. He didn't prescribe it to me first time around and actually I haven't had any problems so I just shoved it in the cupboard when I got the next prescription. Does anyone need a pack to save themselves a few quid? I can pop it in the post if you pm me your address.