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.

Free so sorry to hear it's been confirmed as a miscarriage. But glad you can now finally move on and do what you need to do. Do you know when your ERPC will be? In which case I'd definitely stay off the aspirin.
My first two MCs were pregnancies that looked like they never really got that far - neither grew more than 5 weeks. I mc'ed those naturally so will never know whether they had chromosome problems or whether my body rejected 'healthy' babies.
I think you have to take into account that you were on the treatment so it's extremely likely that there was a chromosome problem here. And perhaps it's best to wait till you get answers from the karyotyping tests before embarking on any pre-conception treatment. That's what I'd be telling myself anyway.

I really feel for you on the wasted time thing. It's been two years since we started TTC#2. In that time people have got pregnant, had babies and celebrated their first birthdays. I've just got a load of bad epu scan memories and head full of RMC facts. But nothing is truly a waste of time. You learn more, even if it's 'what not to do' next time. And all of this serves to make us stronger.

I'm doing my best not to compare this pg to any of the others. I had bleeding and cramping with DS which was absolute torture and would definitely prefer not to go through that again. It's fine once it's stopped, it's just trying to ignore it when it's happening is difficult.

Mine seems to have followed the pattern of those two too Digi. I have just heard the ERPC is at 7am on Thursday and I can leave by midday. I am guessing I won't know anything about this one either as the hospital said they didn't really test and also there was nothing there to test! Maybe it was a blighted ovum. I can't find out whether they can also have a yolk sac or not - opinion seems divided. But also, my online research shows NK cells can lead to blighted ovums as well.

Louise also told me that they do indeed have a small number of people who still miscarry and often find an abnormailty but sometimes women do also miscarry on the first round of treatment and they then need to change their management.

The wasted time thing is a real bugger isn't it. I can only imagine how you must feel after having been ttc for two years. How come you are seeing Mr S at this stage rather than before? With me it was only some weird instinct but based on having thyroid problems. I know cramping must be painful and horribly worrying but hopefully not all a bad sign if you had it with DS. Remember this is your first one on the treatment and there is every chance it will work.

free Have you definitely got a 7am slot? From my experience they ask you to go in early and then work out the list. I was seen last , but hopefully your hospital is more organised than mine. I would also check before you go as to whether DH is allowed to wait in the ward with you, as with us DH was turned away and told he'd get a call to come and collect me. It's only when I started crying just before my 'turn' that the nurses said I should have been allowed to have DH with me. In any case I would take a thick book and some trashy mags. You may find it easier to distract yourself in escapism rather than lurking on MN too much. Bring some slippers, because they'll ask you to take your shoes off at the beginning, but then you might want to pop to the loo while you're still waiting.
If you've not had GA before, prepare to feel completely wiped out afterwards - don't plan a meal out, get takeaway or make sure DH has cooked something easy. I found that I didn't even have the strength to feed myself and DH had to spoonfeed me (which was thoroughly depressing).
Above all - take it easy.
I feel very sad typing all this out. Brings back so many memories.

I feel a bit sad for you too, thinking of how you felt afterwards and what you had to go through :(

A bit sad for all of us really. It's certainly totally crap that you have experience with this and also crap that any of us have to go through it too. It's a sad situation all round I guess. No getting away from it. We try to be positive and carry on and we manage really well, as we have to, but yes it is terribly sad too.

All very good advice though, I will stock up on trashy mags and try to see it as a rest and def take flip flops and some comfy clothes. Actually I have to go down to a hospital I have never been to before in Sidcup and yes I think I will be in a queue as they said I should be out by midday. DH is actually only able to drop me off and pick me up so I will be on my own anyway! It's just too difficult for him to let people down with work (he works with disabled people) at such a short notice. But I think I will be okay and it's good he can pick me up.

The only time I have had a GA is when I had the termination when I was 19, ironically. I remember feeling a bit panicky about my breathing afterwards.

I am bleeding quite a bit now but have a situation that tomorrow I really can't get out of so am hoping I will be ok and will just have to dose up on painkillers. Ironically, again, I have said I will help out on a series of videos for charity in relation to child bereavement and I have to get the train to Bucks for a meeting, have meeting, have lunch and come back on the train. All very good unless the miscarriage really starts to kick off! I guess at least if it does they are people who might understand if I am buckled over in pain or similar.

So sorry Freelance.
I once started to mc during a course on bereavement - life does like it's little ironies, doesn't it
I brought a John Grisham novel (think THICK and easy to read). Take whatever drugs you're offered. I just slept all evening/night when I got home. I quite liked the being taken care of, and there was a pleasant haze from the drugs.
My one ERPC was definitely better than the 2-weeks-of-waiting one, or indeed the latest one which mostly happened in the toilets in King's Cross!

Miscarrying in the toilet at Kings Cross doesn't sound much fun Iggii! It's odd as I just can't face reading anything at the moment except miscarriage/pregnancy research. So maybe I need to get my arse back into gear and start reading for pleasure too. Actually yesterday I did order Taking Charge of Your Fertility for the next bout of ttc so that might arrive!

I must remember to see the post drugs haze as a cheap high :) Am wondering when that first glass of wine will also pass my lips. Not Thursday obviously...

Free so very sorry to hear how things have gone today. To add to the list of ERPC experiences, I echo Digi's comments about take some good easy reading and comfortable footwear .. and if your hospital is anything like mine, prepare for the sexy compression stockings and super-sexy disposable knickers, I've had both of those both ERPCs now. Oh the joy of it all!

Like Digi says it depends on their list as to when they'll actually see you. I was in at 7:30 both times, seen at 9am this last time, and told that I would be out (both times) around 1pmish. Both times I wasn't out till gone 3pm, and that's nothing to do with any complications as there weren't any (well, excluding the panic they always have over my low blood pressure). But again, that could well be just my hospital being less than efficient at the release side of things. My hospital regs say OH can be with you at all times, but I didn't see the point of OH having to sit around and wait for me to be compos mentis so he just picked me up when I rang him and told him they were ready for me to go, since he only works a few minutes down the road from the hospital.

I was given paracetamol and diclofenac to take home with me both times; I didn't need either first time, and this last time a couple of nights I took the diclofenac, but that was it (partly because diclofenac makes me dizzy so I wouldn't take them during the day anyway). GA does of course leave you feeling washed out and again I echo Digi's comments about get in a takeway or get your OH to cook/spoil you rotten (although that should go without saying ;) ). Take it easy for a couple of days, and hopefully you'll recover quickly.

I know exactly what you mean about the feeling like you've wasted time - being 43 any months waiting to recuperate is just time down the drain. And ditto to knowing what you mean about not feeling like reading anything other than pregnancy/miscarriage research - for the two weeks I was in limbo before my ERPC while on holiday in Spain I just endlessly spent my spare time reading up on RMC stuff over the internet (via an iPhone ... painful!). But I needed to know what my options were, and my brain just obsessed. I can't say I'm a whole lot better now, but I encourage you definitely to take something that will completely take your mind away to another place entirely while you're waiting for the ERPC, it's good for the head I think.

Me personally I'm trying to cut down on the internet research since I scared myself this afternoon reading that you should wean off agnus castus (vitex) supplements gradually over the first trimester of pregnancy to avoid progesterone dropping (and hence miscarriage), whereas all three times I've MCd I've gone completely cold turkey at the time I got my BFP since manufacturers of these things tell you absolutely not to take them when pg. I did wonder about the wisdom of cutting it out completely, I wondered if it would do something harmful to the body's levels of progesterone, but thought that it was supposed to be harmful to the baby or something if you carry on so weighed up that to be the right choice. I am now worrying silly that I inadvertently caused all 3 MCs by doing this, maybe my babies were all perfectly healthy and I killed them by my ignorance. I am a knowledge-freak, a research junkie, but I'm rather wishing I hadn't found this nugget of information, even though it will be useful for the next pregnancy :( Anyway, looking towards my appt with Mr S on 12th Sept, so trying to be positive.

As I hope you can be ... I know it's a cr@ppy time and I'm so, so sorry you're going through this. Lots of good wishes and PMA coming your way, and do go easy on yourself as much as you can with your busy schedule.

Ari x

So sorry about your mc freelance. I would echo what everyone has said about the erpc. Take stuff to do - I was admitted on the friday at 0800 and was not taken to theatre unitl 4pm on the saturday. I was weeping with the frustration of it all. Afterwards, I bled for a day and spotted for about 3 days. That was in June, and I am still waiting for AF, but I was quite far on. After my first erpc at 12 weeks (but baby died around 10), I ovulated 3 weeks later and had AF 2 weeks after that xx. I also know exactly what you mean Re wasting time. I am 38, no kids and 3 mc. When I first got pg last year, my friend had just got engaged. She is now married, and 24 weeks pg. I could scream with the frustration, my body is still not back to normal, and I just want to get on with things. So I do feel your pain too xxx

digi I hope you are just plodding along and have nothing to report x

Thought I would update - saw MrS yesterday. My NK cells are in the high category at 1.51, so I am starting on the steroid plan. They did say they wanted to see me after the first cycle, then if I get pg at 6, 8 , 10 and 12 and 20 weeks for a scan. I can not afford all of those so I know my nhs consultant will scan me then. They did say that a 9 week scan is important though as they can see if the heart is strong or not, so I am better of getting scanned with them. I thought after I should have asked what they would do / could do if the hb was slow??

I hope everyone else is ok :) xx

Thanks guys, it is really good to hear how it went for you so I can be more prepared for what is going to happen on Thursday. I've had half a bottle of wine tonight and a Chinese takeaway with DH, watched a bad movie and generally tried to remain ok.

Ari I really don't think you have done any harm yourself with the agnus castus. I really really think that you have to really work hard to cause a miscarriage via anything you have done yourself. Am a research junkie too and I know how a little knowledge can be dangerous! But we are all indeed building up our own medical library here. I know that today, for example, to a certain extent I knew more than the GP I saw at EPU. He was about 12 and I had to stop suggesting things in the end as he kept saying 'I don't know'.

It seems we can all relate to that wasting time thing Battery. I hate the fact that we are all here but it is quite comforting to know I am not alone. Glad you didn't bleed too much after the ERPC but hope you get AF soon. What date in June was the ERPC? As soon as you get it, are you going to start SWI and start taking the steroids? Any steroid questions let us know! It;s good that you got the diagnosis from Mr S and a protocol. I have been chatting to some ladies on the Baby Centre Immunology thread and they are all really positive about his treatment.

It's funny though, all the stories you read about the treatment are about women who have X number of miscarriages, get treated and immediately have a successful pregnancy. Of course that can't be the case as there are at least 15% of people who either don't get pregnant or miscarry. But that 15% is apparently individual chance rather than the clinic as a whole so I guess those are pretty good odds.

It's weird with this miscarriage as given treatment you think I would be more positive. It is like I was expecting it though. Is that just having had my fingers burned before and a natural defence mechanism or did I know deep down this wasn't a viable pregnancy? Not having many symptoms (as apparently Pred can mask them) is a bit odd too.

Now, here's a final bit of interesting info for us. A friend on another thread who has had one 20 week loss followed by two earlier losses emailed Prof Quenby yesterday. She emailed back and passed on a leaflet for a new self-funded clinic she has set up. Basically, with a GP referral she will test for Uterine NK cells rather than just blood levels as Mr S does. You get a consultation, ultrasound scan, endometrial biopsy, uNK cells test results and telephone consultation to discuss results all for £260. Of course the treatment is probably the same but it is interesting and something I might consider just in case.

Aww, freelance sorry you've reached this point. I really hoped there would be a glimmer of hope. Best of luck for Thursday. I had the same experience with going in at 7am and waiting ages too. Easy reading is a good idea, as is an iPod so you can block everyone else out.

I didn't really have much pain after most of mine. I was given Diclofenac but it gave me really bad stomach cramps. I would avoid it if you are prone to any sort of IBS or reflux problems normally. I had Dihydracodeine or co-codamol for most of them and although they can make you a bit constipated they are quite good for helping you sleep if you are feeling upset.

I agree too, the time wasting is very frustrating. I'm creeping towards 42, TTC 4 years, 6 pregnancies later and those who were struggling to conceive when I was feeling quietly pleased with myself for being pregnant the first time have now had their second. I just hope that I get pregnant this or next cycle so that I don't have to wait the 2 month gap off the steroids otherwise I will be 42 before I have a chance of getting pregnant (if at all, considering the age my mum and grandma both started their menopause).

Today I was on the phone speaking to the guy who was dealing with my internet advertising. He's quite chatty and on today's call he proudly announced that since he'd spoken to me last he had just found out he is expecting his second child. Wooohooo! Thing is it's all just part of life. What everyone is put on this earth do do, apparently. So others don't think twice about passing on this kind of news to strangers without considering their circumstances.

Thanks Kittens. I do indeed have a sensitive tummy and am bloated and constipated enough as it is so will bear that in mind! I really feel for you with the ttc for four years and six pregnancies later. I don't know what to say. It;s so frustrating being our own doctors to a certain extent, even when we are actually seeing very expensive specialists. You are right about other people too, they just blithely are not aware of anyone who they might upset by chatting away happily about pregnancy. I guess I wouldn't do either in their position. If I ever do manage to get pregnant and carry it to term I am sure I will not mention it to so many people!

I am still Dr Googling and just wondering whether what am doing with Mr S is actually enough. Reading these Beer based success stories, they seem to do so much more! I worry that maybe I am just missing something and he will never find it.

www.miscarriage.co/?page_id=71

Hope your meeting goes quickly and without incident free

I'm sat in St Mary's EPC waiting for the teg. Remarkably quiet here compared to when it's the RMC on Tuesdays.

Bloody hell, the amount of time we spend in hospitals etc! Hope it goes well at St Mary's.

Another positive story for you. I went out for a drink with a friend last night who asked how I was getting on with the baby situation. When I told him about the NK Cell thing he said "Oh yes, that's exactly what happened to our friend. They had their first with no problems and then this presented itself when they were trying for their second, but they have just had their second because of the steroid treatment."

Just thought I'd share that. x

Free I'd be interested to hear about that new self-funded clinic of Prof. Quenby's? £260 sounds a reasonable amount for such a test/consultation, although I would as you say be interested to know what the treatment is. I'd also be interested to know how many more incidences of high NK cells are detected this way, with uNK testing, when compared to blood testing. And I know what you mean about the Dr Beer method seeming to do so much more in the way of treatment, having read his book ... but I also know I couldn't afford a lot of what they talk about, I see some ladies mentioning they've spent upwards of £10K+ just on the treatments alone when under the Dr Beer regime and that's just out of my ball park unfortunately.

Hope all goes well tomorrow!

lovely story kittens

had my test and I'm back at work now. they'll call me back with the results later. hopefully it'll be clear.

I've also booked in for a scan with St Mary's in 3 weeks on 7th September, when I'll be hopefully be 8+2 (coincidentally the 'date' it all went wrong last time). So I think I might move my appointment with Mr S further back, which was pencilled in for the 10th. Seems silly to pay for a scan only 4 days after I've had one.

I was feeling quite good about that story until I told it to my OH, who is supposedly the optimist in this relationship. He replied "Yes, but you're not going to be told the stories where their friends tried the treatment and didn't end up with a baby" - um, yes, thanks for that! Now I'm feeling despondent and hopeless again and on the verge of tears when I was feeling quite chirpy this morning. He's gone off to work and left me with that bombshell. FFS!

I am perfectly aware that there isn't a 100% success rate. Sadly Iggii & Freelance have found this out and I do hope my earlier post isn't insensitive given those circumstances, in the same way that we are fed up with others' pregnancy announcements. It is still helpful and inspiring to know of people that the treatment has worked for though isn't it?

When do you get your TEG results digi? Will it make a difference to your treatment? I think you're right about moving your scan date with Mr S. Maybe a week after the NHS scan would be good? I thought he recommended a 6 week scan too. Are you not having one that early? I am quite loath to have a 6 week scan. All the other times I've had scans that early they've not been able to see much and then I've had an agonising wait for 2 weeks. I'd rather go in for the first at 7 weeks when they can get a more definitive idea of what's going on.

freelance I don't know if you've got much chance to get on here today what with your meetings but I hope you are doing ok. I'm thinking of you. x

kittens silly OH, doesn't he know that we KNOW that there are obviously women who decide to stop trying and therefore don't become a success story - but how do we know it's not because they've just decided to stop and maybe if they had one more go it would have worked?
Anyway, it's good PMA to think of other's success as an inspiration.

They're supposed to call me back today with the TEG results. If there's an issue it'll just mean I up my dose of aspirin from 75mg to 150mg. Although, when I mentioned this to my acupuncturist, who knows Mr S v well, he reckons that Mr S doesn't see much difference between 75mg and 150mg so I may call the clinic and see what they recommend.

Ideally I'd go in for a 7 week scan but it'll be right before a big weekend of weddings and I don't think I could face dealing with inconclusive or bad news before that weekend. I'd rather pretend all was well, have a nice time seeing friends get hitched and then deal with the reality of my situation when we get back.

I want to find out more about it too Ari so will let you know. Sorry you have been feeling a bit low Kittens, I think it's things like that that can set us off. Today I have been feeling really emotional, not about my situation but about that poor honeymoon woman who's husband was killed by a shark! Such a tragedy, then you're there in another country in your honeymoon room, I keep thinking of things like his clothes will be there and have to be packed etc, what she must be going through. And then of course u have been watching videos and reading stories all day from children who's mummy has died... No wonder am bloody emotional! All quite distracting from thinking about my situation and tomorrow too, although am a bit nervous thinking about the anaesthetic. I think emotionally this time it helps as a baby wasn't seen, either I killed it off early or it was a blighted ovum I guess! Am now really looking forward to the 9th when I see mr s and see what he says about trying anything different.

Digital I would second that about waiting for the scan, it's so bloody expensive and what can he tell you that early anyway! And it would freak you out if it was too early to see. I think I will ask him next time whether he is looking for anything Epu / St mary's in your case are not. Otherwise if (when??!!) I get pregnant again I might leave it until 8 weeks. Also I would ask him if a scan outcome would influence treatment? On some of those dr beer testimonies they bring in more treatments as things develop, big mr s doesn't seem to do that as far as I am aware.

Well I'm looking forward to hearing what Mr S says to you Free since you're seeing him 3 days before I see him for the first time. Everyone keeps saying I should have questions to ask him but I really don't know what, other than "I haven't had any tests done at all, neither has my OH, will you please test us for everything!". Feels a bit like when you go for a job interview, and they expect you to have a ramp of questions to ask them, but your mind goes blank and you can't think of anything to ask! :)

Good luck for tomorrow, don't be nervous about the anaesthetic, it's amazingly fast - one minute they're applying the drug, the next minute you're awake and wondering where the last half an hour or so went :)

It's exciting to be having your first appointment with him Ari, means you can soon get on with things. Same as me - I am keen to find out what our next plan of action is. I think I will look into that Professor Quenby thing too. I haven't done anything about it for a while as I have been too caught up with my own issues but I am trying to cobble together some sort of documentary (and digi and I have met up to talk about this too) about this treatment and miscarriage. I have already interviewed Mr S and Prof Quenby would be an addition to that. So I am going to give her a shout at some point, now when I have a dearth in mentalling before trying again!

Unless you are getting private health insurance to pay for it Ari I would ask him what tests you can get done on the NHS. It seems like if you get him on the right day he can be quite helpful telling you what can be done on the NHS and what can't. Otherwise the raft of tests will set you back around £1000. I had had most things done on the NHS and then only needed NK cells.

Thanks for the reassurance about the GA too. I have a bag packed with ballet pumps (I don't have any slippers!), magazines and some food and drink just in case for afterwards too. Leaving home around 6.30am so will give you a shout tomorrow and let you know how it goes. Onwards to the next step.

Digi did they call you back re the results yet? A girl on the freak out boards recently found out she had TEG problems when pregnant (St Mary's as well) and you are right they just doubled her dosage of aspirin. It just makes things a bit more confusing when experts don't agree with each other doesn't it (re Mr S not necessarily agreeing without the aspirin increase and St Mary's not necessarily agreeing about NK cells). Even more isolating for us as patients trying to take what we can from each of them!

No news on my test results. Bit slack of them to not leave a message. Laf said she got her results the same day but they were abnormal, so maybe they only ring you if they need to.

Glad you got through the day today free will be thinking of you tomorrow morning. Hope it goes smoothly.

Free thinking about you, hopefully you'll be into theatre v soon and it will all be over and done with. I have to say, one of the worst things I find is having to be in hospital so darned early, up even earlier than a normal working day! :)

BUPA is paying for mine and OH's tests, thank all the stars, and my GP said she wasn't going to do anything on the NHS since Mr S could do everything necessary anyway!! I wasn't particularly impressed, but there you go. So I'll be asking Mr S to run every test possible, really not looking forward to having to give even more blood, I hate needles :(

Hope everything's going smoothly Free and taking care, rest afterwards until you're feeling 100%.

Free, I hope everything went well for you. Rest up and I'm thinking of you. I have been there twice so I know how you must feel hon. Xx

free hope this morning went ok