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.

You and me both Digi! I have used the CBFM for a while so it knows my system. Just goes to show it can change month to month.

Free we have a little girl already, she will be 4 in December. I know how lucky we are to have her but it is so sad when she asks if she can have a sister like her friends or when were at a park and keeps asking other kids to be her sister! We would love another for her. If it doesnt happen by November were just going to buy a holiday home in Majorca and spend more time together! I have so much on hold until I find out if we can have another. I resigned from my job in February and although I worked part time i miss it, if i dont get pregnant then i think i will go back.

I have the tipped uterus and it causes no problems at all xx

Hello ladies, just thought I would pop in to let you know how my appointment went
Mr S was great, was only in there for about 30 minutes. he does think I may have an immune problem, so I have had my bloods tested today. He has started me on aspirin, pregnare care plus and vitamin d. He was a bit that I was advised not to take aspirin until I had my first scan, I should be taking it all the time. As I have had lots of bloods already he only tested for immunity, and as I said I wanted to start ttc asap as work are going to send me away for 4 months, he is seeing me in 12 days for results and a plan.So thats it really, at least I don't have to wait for ages. He was quite shocked taht my last mc was at 12 weeks, and thinks it must be my immunity.

He also thinks my factor v is a red herring and it is not causing the mc's. However he does want me to stay on the heparin when I get pg as now I have had it before, he does not want to stop it.

Sorry not to name check, but big wave to all xx

Hey Battery, thanks for letting us know. It must feel good that something is finally underway! Looking forward to you getting your results. I didn't know you had been told that about the aspirin, had it come up we could have told you to start taking it already. But you are on it now so that is good. Interesting that he reckoned the factor v is not causing the mcs.

Am ok actually digi not over-researching any more than normal. I think I have got to the stage where every combination of words I put in leads me somewhere I have found before! I have out googled myself... Nothing I can do but wait. Oh and maybe see what I can do differently next time. One thing I have decided to dig out though is see if I can get the info from the termination I had in 1994 - when they said what had been retrieved was small. I am wondering what that was as it was my first pregnancy. Not sure whether the info will be found though!

Can't find tipped uterus on any of my notes before Cheerful and Georgie but I will ask at the docs tomorrow just in case. I am not seeing my normal doc as she is away but I needed to make an appointment as I need some repeat prescriptions and a thyroid test. I seem to be spending my life in medical facilities all over the place at the moment! I guess we all are.

Georgie holiday home in Mallorca sounds great! Such a gorgeous place. I was out with a friend who is struggling to get pregnant after several IVF attempts tonight and we have the 'what if we can't conversation' and said similar things - we might consider adopting but also might consider just having a fabulous lifestyle to compensate. It might not yet come to that of course but it is good to try to enjoy life no matter what it throws at us we mused.

Glad St Mary's are being proactive Digi. It is good to have another brain on the case I think. What is the TEG is it thrombophilias? I think I have have everything tested but you never know what might have been missed. I also read someone today who said they had TEG when pregnant so i guess that's why they want to test you again if pregnant. Maybe it is something I should look into too.

battery I've responded on sixth form thread...but just wanted to say another hooray for getting your results fast-tracked. Also, if Mr S is right that the Factor V thing is a red herring then at least you don't have to worry about the lost sample.

free The TEG is a very specific clotting test they do, it stands for Thrombo-Elastogram. It's a very specialised test and it's done within the hour of taking blood, unlike tests they do for APAs and other thrombophilias. It's the only test I hadn't had done at my local hospital and was the one of the main reasons I agreed to be refered to St Mary's despite already being seen by Mr S. Basically even if you don't have a clotting disorder like Factor V your blood can still have a tendency to clot in reaction to pregnancy hormones. So they run the TEG test again once you're pregnant - and if it looks like my blood is clotting then they'll either advise 75mg aspirin or if I'm already on it then they'll up it to 150mg.
The other main reasons I'm having 'double care' is that I can get extra scans at St Marys (and use them in lieu of my EPU) but also, they're really hot on karyotyping and testing every miscarriage. So if I do miscarry again then I at least I'll be in the right place for an ERPC.

I am 10dpo today and had painful cramping this morning. Eerily reminiscent of MC cramps. But also it's my number one pg symptom (isn't that brilliant that I've got a symptom that I connect with mc or pg!). Haven't tested so I can stick my head in the sand about what it means.

Digi you are brilliant with all this knowledge. It's such a learning curve isn't it. I am now wishing I could get tested for TEG now I am pregnant too. I did have a referral for St Mary's made but I reckon it must have disappeared into the ether along with my first Mr S referral, which I then actively pursued and had faxed to his office. I didn't do this with St Marys so am probably not in their system.

I remember you saying about cramping being your number one symptom when you were going through my 2ww notes! Fingers crossed it is. It would work really well if it was this month. Yes it is such a shame we have 'when I am pregnant' or 'when I am miscarrying' symptoms. This time for me is very different to last time but any symptoms I do get that are the same make me worry and any new ones make me worry. When are you going to test?

I am thinking of cancelling my appointment next Thurs 11th with Mr S (no charge to do this if I do it now). It was a really difficult time for me to make due to various things going on but the only slot he had due to his holidays. This is my thinking:

1. I am going for a scan on Weds at EPU anyway now so is it just a waste of time/money to have one with him the next day.
2. If the scan reveals something is there and it's worth trying to save it I will book straight in for an intralipids session (£350) Thurs AM.
3. If the scan shows something not viable I guess I have to face facts it's over and make arrangements re what to do next.
4. If the scan is still inconclusive I think that is a bad sign, BUT do I go ahead and do intraplids anyway just in case??
5. Either way an extra scan meeting (at £250) doesn't seem necessary at the moment. I can schedule one for the week after or so.

If I wasn't going to EPU it would be different. My only worry being that is Mr S' scanning powers/prowess better than anything I will get at EPU? OR what if something doesn't show on the Weds and then would have miraculously been seen on the Thurs? It would be the difference between me having the intralipids or not! I know there are more important things at stake here than cash so I am not sure what to do.

What does everyone think? At his office in Harley Street he only had a small portable machine so no big hospital thing. The thing is I never have much faith in my local hospital. Aggh! AM I doing the right thing???

freelance I would go with your plan, get the scan at EPAU and go from there. If it does show a viable pg, then hooray and get booked in for intralipids, if it does not show a viable pg (hopefully not) then you can always get a scan again at the epau a week later. Also I called Mr S office today - he has got some very early appts left on tues 16th before his holiday so maybe you could try and book then? It will give you a few more days then xx
digi I saw your reply on the other thread and glad you are starting back on the aspirin too. Mr S was quite determined that I take mine religiously every day along with the other meds.

I have managed to book in to see him again on the 15th for my results. The clinic is still at harley street which is so much easier for me to get to, and DP can come this time too :)

Wave to everyone xx

He's having the holiday AFTER the 16th? I thought he fit me in on the 11th as that was when he was back from holiday. Maybe I got that wrong. I guess it is August...

Thanks for the advice, I think that's what I will do. Gosh, time towards Wednesday is dragging in a way. Thankfully I have a weekend in Brighton followed by a Sunday - Tuesday in Amsterdam to distract me. Seems silly that I 'living pregnantly' (which is really just avoiding the wine...) when I might not even be considered pregnant this time next week.

Great that DP can go with you on the 15th. I was quite shocked when I got my results. I was so busy thinking about the practicalities of it that I forgot I was personally involved and might be getting a diagnosis of some dodgy condition. When he told me about my super dooper levels I was rather shocked. I do hope yours aren't as bad.

free I agree with battery and think you should keep the scan at the epu. What you should do is request print outs of scan pictures and measurements so you can take those to Mr S for your next appointment. Say you're willing to pay for them and they should be happy to give you copies.

Yes that is a very good idea to ask for print outs. I am back at the hospital now actually, just to get thyroid tests and have also asked for hcg levels to be done. Of course it might be too late anyway by the time I get the results, as they will probably take longer than a week to come back. If the scan is in any way still inconclusive on weds I can make the decision then to either have an intralipids on Thursday just in case or not bother/ not need to arrange one.

Right now am wondering if there is anything else apart from nk cells that mean things don't seem to grow for me. Just wondering about my first pregnancy still. According to the nk cell theory it would have been that pregnancy that kicked off the cells, right? But after the termination they had to check that everything was all there as it had measured small. Of course I was 19 and could have just got my dates wrong. Or is there something more to it? Shame the doc said she couldnt find the results from the 1994 test. Wonder if there's any other way if finding where these records might be kept.

Digi, how is your 2ww going and when are you planning to test?

Free I also agree with your plan about going to EPU first. Please dont take this the wrong way but I would forget about what possible reasons there were for size going back to 1994. Its a long time ago, I worry that you will drive yourself mad trying to find out and youre worrying too much.

I had a miscarriage in 1998 and i was only 6 weeks pregnant, it was an accident so had no idea I was or what dates etc were. Its such a long time ago and sometimes in your first pregnancy your body is just getting used to things. I must not of had NK cells in 2007 when I had DD but I must of had them in the last 2 years?!

I hope you can relax and enjoy your trips. xx

free I think you have to wait and see how this turns out. I don't know if there's anything else you can look into - other than maybe get your ovarian reserve checked (Mr S may not agree this is necessary). I really do think you've done everything there is to do to ensure that if this a viable pg then it will remain so.

Planning on testing tomorrow at 12dpo. Although not feeling particularly pg today so not looking forward to it. Might put it off till Sunday.

I think unfortunately digi on Pred 'feeling pregnant' doesn't mean much. It hides a multitude of symptoms and brings with it plenty of others! Take it from the girl who doesn't feel pregnant/has the occasional pregnant feelings on 40mg.

Is anyone else eating for england on the Pred or is it just me on the high dose combined with early pregnancy (whatever is going on in there)? I just practically had to run to the shop to get a big box of cereal as mid afternoon cereal was the only thing that was going to hit the spot.

DH said to me yesterday that some of the reports I write for him are not as good as usual and I have been missing things out. He says it is like I have been distracted or something. No shit, Sherlock! Doesn't he know I have 17 tablets a day to take and a whole load of time spent googling/mnetting to squeeze in to my working day.

georgie that is good advice too. Interesting about your mc in 1998. I had a definite one the year after my termination and it wasn't planned either and was a bit of a shock amidst much drinking and further naughty behaviour of an angst ridden 20 year old. But yes, there is something to be said for too much thinking. I was also reading Dr Beer again last night (more lighthearted bedtime reading :) ) and noting that people with very high NK cells CAN actually have successful untreated pregnancies. The chances of it happening are just pretty low. But they can happen of course. So who knows what was going on for any of us back in the 90s!

Freelance, my initial thoughts were that if I were you I would also cancel the DR S aapt to save the money , but on reflection, I think I wouldn't. If it does turn out to be a mc maybe DR S can glean some info from scanning you that would possibly point to the likely reason for miscarriage. He might at least be able to rule some of the possibilities out and he's much more skilled than the docs at the epu and he knows your history better. He may also provide advice on the next steps. You'll still need to know whether to take a break from the pred for a month or two, whether to have tests for anything else and also he may advice how to go about the mc- naturally etc.

Of course we all are hoping for good news and that it doesn't turn out badly but if it does and you can get some more clues from this as to what's going on, it may help in the future for you.

free hope you are having a lovely weekend in Brighton and looking forward to Amsterdam tomorrow. I went years ago with dh (then DP) and we had a brilliant time - lost a few hours which was almost a waste, but I expect you won't be running that risk!

So I tested this morning - and it was positive. Got that 'here we go again' feeling. Glad I started the aspirin the night before I got those implantation cramps. Guess I start the progesterone tonight.

Oh my god Digi!!! Woooo! A positive! Here we go again indeed, only this time you are on pred and other mess that will hopefully work their magic. Congratulations on what is a huge first step and a great accomplishment! You need to celebrate and no, for both of us that won't mean any lost hours in Amsterdam this time! Well done though, it must have been the threat of expensive and complicated ovulation potions that had a helping hand. What is the next step with mr s? You are staying on 25mg I think? Glad you started aspirin.

I meant meds rather than mess, but the two aren't so different :)

A BFP! That's great news digi!

Yay Digi that's brilliant news. Congratulations! Best of luck to you.

Thinking of you freelance I hope you're not climbing the walls too much. Was thinking about your comment about the probability of your first pregnancy kick starting your NK Cells. I'm not sure if that would've been the case based on my own experience. My first pregnancy was a MMC, discovered at 10-11 weeks but stopped growing at 8wks but my second and third pregnancies were not MCs and could have possibly made it to full term but I chose to terminate the pregnancies due to chromosome abnormalities, so I'm not sure exactly when the NK Cells would've made an appearance. Unless there's something about having a termination that causes them, but then again, if that were the case then I assume I would've miscarried the third one, which I didn't. It's all very mysterious!

Just a fleeting visit so not much time for personals.

I am on CD10 and have carefully worked out a schedule which means I can see my mum and still SWI on hopefully the right days.

Yes, we've managed to avoid expensive superov by conveniently getting pg this cycle! Not like we didn't put any effort in. Near daily swi till cd32.

So now I carry on taking 25mg of pred. Start the cyclogest. Continue with metformin, vit d3, aspirin and pregnacare.
Think about booking in for a TEG next week with St Mary's.
Wait another two weeks for a scan. Cross fingers. Forget I am pg. Even though today I am shattered and already feel a bit off colour. Am thinking this is combo of lack of sleep from pred plus reaction to going back on the met.

X posts. Happy swi!

BTW, I started reading Dr Beer's book today. V interesting stuff! Hopefully soon I will have less need to come on here and probe you all for info!

I'll have my fingers crossed for you digi.

Digi your efforts towards SWI this month have indeed been award winning it would have been one of those months where you would have thought, well if THAT didn't do it what blood will?!

Can I ask you, at what stage have your other pregnancies seemed to have stopped? Really hoping the Pred and meds do the trick for you this time but understanding too a certain detachment.

My best friend, when asked by text the other day how things were going, must have been shocked when after my second empty sac scan I said something like 'at least if it goes wrong early I will be able to get it out earlier this time' as she responded with 'I think you should get some counselling as to whether this (ie having a baby) is something you actually really want'. I was really upset by the response. Now is really not the time for my best friend to be questioning whether I actually want a baby! I still feel rather furious actually but in RL I am ignoring it as there is no way she can understand my need to be a bit detached and look at the practical side of things. I am sure if this time or any other time if I do manage to keep a pregnancy I will become attached to the baby once it is here! Or at least further along.

I am so pleased we all have somewhere we can discuss this stuff! It's nice to know there other people randomly researching/thinking about how NK cells might affect them. Kittens that is interesting about your first pregnancy having been an MMC as I thought that Mr S implied NK cells ofter kick in after a first successful pregnancy, therefore thinking that for me that might have been the termination. But I guess the key issue is OFTEN rather than always and the research is still so new anyway that maybe that is not always the case. Well, obviously it is not the case with your example.

Euro glad you have started Dr Beer's book. I have kept it by my bedside since it arrived months ago and keep dipping in and out of it. I don't know what reflection this has on my brain capacity but every time I read it I find something new. I keep forgetting to go through it with a highlighter.

Today's randomly googling - been checking out whether there is a link between blighted ovum (in reference to my so far empty sac) and high NK cells is this page, which has answers by Dr Beer himself on as far as I can tell. It seems they think blighted ovum IS more common in those with immune problems, so that too would back up the theory that the first pregnancy doesn't always have to be a successful one:

health.dir.groups.yahoo.com/group/immunologysupport/message/30060

Could there also be a link between chromosomal problems (Kittens) and high NK cells or is that just physically impossible?

free All my previous pregnancies stopped at different times between 5 weeks and 8 weeks. The last one was pretty spot on for dates - so had only just stopped developing a day or two before I started bleeding and went in for the scan - so up till that point it had grown well. It was chromosomally abnormal and I do wonder if it hadn't been whether it would have been part of my 30% chance of making it through untreated.
The two before that didn't develop well from the start. Small for conception dates. One that did develop a hb wasn't particularly strong. The first mc was during breastfeeding so wasn't too sure when I ovulated - got a bfp about 11 weeks into that cycle and started bleeding the next day. Scan showed a sac around 5 weeks but it could well have been spot on for conception date.

I'm sorry your friend upset you. I think it's impossible for anyone to understand how it feels to be us unless you've been through it. Unless you've been through a mc you can't understand how difficult it is to just assume a bfp means a baby. You're perfectly normal to be thinking the way you are - remaining detached and trying to prepare yourself for making the best of a bad situation. I've seen women deal with it much more hysterically - venting their darkest fears on a daily basis whilst locking themselves away from the rest of the world. Not that that isn't understandable, but they clearly have needed some counselling. I think you're doing amazingly well working through your thought processes here on mn, rationalising them. You OBVIOUSLY want this, otherwise you wouldn't be taking such steps to protect yourself for potentially going through it again. She was out of line saying that to you - but I don't think she'll ever get why.

Hi there, sorry am in Amsterdam for a couple of days so only have time for the occasional lurk.

It's interesting that there hasn't really been any pattern with your mcs Digi. Hope this time the medication really does do it for you. It's funny actually taking all this medication as I know that taking it gives us a much better chance of being successful but for some reason I can't apply that to myself at the moment. I guess because mine might not be growing properly from what the scans have shown so far. Only got to wait until Weds though and I should know something then, one way or the other. You are right about the friend too. I only feel comfortable with certain people at the moment anyway for some reason.

Hope you're feeling ok now? getting any symptoms? I am just hungry and have a lot of sugar cravings - that can be the Pred. I have been having a bit of left side twinging again so must make sure they also check my tubes on Weds, no-one has looked at those yet.

How are you getting on with Dr Beer's book Euro? Hi to Kittens, Cheerful and everyone else xx

Digi fantastic news on you BFP. Really pleased for you. I know its a long journey but as Free has mentioned you are doing everything possible for a positive outcome.

Well i am on day 18 and only just ovulating, this is late for me as usually day 14 and I have a regular cycle of 28 days so not sure what is going on. Back on the pred which I started yesterday.

Waves to everyone else xx