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Conception

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TTC/ pregnancy on Prednisolone or similar

999 replies

freelancegirl · 13/06/2011 16:21

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.

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digitalgirl · 16/09/2011 17:42

OMG! iggi double congrats!!! Bloody hell, you don't do things by halves! Are you accepting the job? What a fantastic distraction to have to keep your mind off being pg! (remember you will have no ill symptoms and the pred gives you loads of energy so you won't necessarily be 'slacking' on the job).

Iggi999 · 16/09/2011 17:48

Thank you - straight back to the land where every twinge is a problem - yesterday twinges just meant wind! It's odd accepting a job when you're pg, but then it's (realistically) likely that I won't be the time I've worked my notice, so no way I'm turning it down.

Havingkittens · 16/09/2011 18:20

Bloody hell iggi, you don't mess around do you? Grin Congratulations! Definitely a good idea to take the job. Fingers crossed for you everything will work out just fine and the great new job will be waiting for you when you get back from maternity leave.

I am off to France on Tuesday, via my family in Sussex the day before, so I can take care of my mum when she gets out of hospital. Will be online though so will check in when I can. I'm going to the Goodwood Revival tomorrow so that should be a nice distraction and then Sunday, sorting and packing.

I POAS today too but too early really. I think I'm about 10dpo, but not 100% sure. Been a bit distracted to keep proper track and on shoots where it was difficult to do my OPKs at the right times. I'm still having crampy feelings but not sure which kind they are.

Stogan · 16/09/2011 20:25

OMG Iggi MASSIVE Congrats YEY !!!!GrinGrinGrinGrinGrinGrinGrinGrin

freelancegirl · 17/09/2011 10:03

Bloody hell Iggi! What a day! Congratulations on both the bfp and the job. Try to be positive about this one, you are on the treatment which gives you s fighting chance. Do you have to do intralipids or just carry on with the pred?

Can I be really honest with everyone? I used to be really empathetic with everyone I read about- having a lump in my throat if there were more mcs of when people got pregnant but I am still feeling strangely detached from it all, like it's not really my world. Like when you don't have children and a friend tells you about something their child has done and you're only half interested as you can't relate. I feel a bit like that now about the whole pregnancy and TTC thing. I can't seen to get excited about bfps and I am a bit matter of fact about mcs. Is that just a defence mechanism? Will it all kick in again when I start to TTC in November?

I hope I'm not coming across as insensitive, I was just whether any if you could relate?

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Iggi999 · 17/09/2011 11:07

I think your mind is probably putting up barriers to protect you Freelance, it makes sense after all you've been through. No point getting all excited about every pg, with our experience.

Is anyone else finding their hair is coming out? Every morning when I wash it my fingers come out covered in strands.

I wanted a bfp so much and already hate it. Every twinge or stretch takes on so much significance. Have got to get my head round it Confused

freelancegirl · 17/09/2011 11:23

I am trying to be positive about if for you Iggi. It's the first step and it's a very essential part of the process! And let's face it, it doesn't really matter if you are miserable as sin throughout the process, as long as the drugs do their job there is every chance you are going to make it this time! Obviously it would be nice to feel good too and not to stress about every twinge or non twinge, but that's unlikely given any of our histories.

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georgiepie · 17/09/2011 11:48

Iggi OMG that is brilliant news. Apart from boobs feeling bit heavy I have had no symptoms so please try to relax as much as you can. The twinges will be just a bit a settling and stretching. x

Kittens Hope you enjoyed Goodwood? Its such a cool day out. Are you getting dressed up?! I hope things go well for you Mum when you get to France on Tuesday, so sorry to read your sad news.

Free I do think it is your defence mechamism kicking in and I think that is completely normal. You are doing what we all do after Mc's prepare for the worse a a BFP when it comes will come with mixed blessings an a ton of anxiety. Again I think you just getting on with other things until Novemeber is a good idea, kind of put it on the back burner and enjoy the alcohol.

Stogan Hi, did you decide to take any time off work? Think you should then after a couple of weeks do the reduced hours. xxx

Stogan · 17/09/2011 13:26

Hey georgie I went the docs and he was so lovely I thought he was going to tell Ne to reduce my hours but he has signed me off for two weeks! I'll be honest I was gutted as although I knew I wasn't coping I thought a couple of hours a day off would do! But the doc said I had enough on my plate so taking work out of the equation would help. I'm coming round to it bit I'm still a bit disappointed in myself but honestly, coming off the pred has really took it out if me infect I'm off for an afternoon nap now ! Fingers crossed at 17 week I will be fighting fit again.
Now all I have to worry about is our meeting with Mr S on wednesday, hope my little one is hanging in there !! X

georgiepie · 17/09/2011 13:33

Slogan- that's good news having time off. Enjoy it and make the most of it. Please don't worry about Wednesday. You're over the worse period and now placenta is doing the job the NK cells won't or dont come into it. It's time for you to look forward hon. Smile xxx

Stogan · 17/09/2011 14:39

Thanks georgie I no we should be ok now but I'm a worrier on a very high scale ???? jest wish it was this time on wed and then ill eventually let OH buy something for baby. Thanks for ur very kind and comforting words xxx

Hope everyone else is having a nice weekend x

freelancegirl · 17/09/2011 15:46

Stogan, that is great news about being signed off. Spend a couple of weeks relaxing and doing things that make you feel good. It's lovely to be able to go for walks, have a nap, see some friends and just generally look after your health and well being.

It's hard to keep up on phone but am a bit worried I didn't sound positive enough about Iggi. What I meant was if you weren't feeling positive I wanted to feel positive on your behalf! When mr s was giving me a stern talking to he said you have to trust him and trust in the treatment and that's what we all need to do.

Who said about hair falling out? Weirdly I am having the opposite. My usually fine-Ish hair is actually thicker and glossier than normal, no idea why. The only difference is I have added magnesium to my arsenal of drugs, but haven't yet consulted doc google to see if that's connected. Surely can't still be down to pregnancy a month after ERPC?!

I am too finding the legacy of pred causes more side effects then I expected. Am pretty sure my aching limbs might be connected in some way. Talking of which, I can feel soreness setting in from holding my phone so I best go. Am also going out for cocktails :)

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Stogan · 17/09/2011 17:26

Thanks freelance, enjoy ur cocktails xxGrin

Havingkittens · 17/09/2011 22:40

georgie, thanks for your thoughts. Yes, I did dress up a bit for Goodwood. As much as possible given the chilly weather anyway. I do tend to lean towards the 40s and 50s in my day to day style though anyway. The day was a good distraction for the most part, apart from the rather unwelcome visit from my period 5 days early. I have mixed feelings really. On one hand I could do without the extra stress of worrying about M/C right now, but on the other hand it would've been nice to have some good news. Now I have to take my 2 month break, which again, on one hand is quite timely but on the other hand means I will be at least 42 if or when I do get pregnant.

freelance I can sort of relate to what you've said. Maybe from a slightly different point of view. I find it quite hard to be excited about anyone's pregnancy after so many losses. I don't think I can ever feel the same way about pregnancy again, whether it be personal or general. I also, as much as it pains me to admit, feel pretty jealous and bitter whenever I learn of people's BFNs. I used to feel thrilled for people, especially those who I've shared these horrible experiences with but now that pregnancy is proving so illusive for me nowadays, when it never used to be, it's that bit harder to hear now. I do feel delighted to hear of all your scan news making good progress though as it gives me the hope that if I do manage to get pregnant the treatment we are on has some hope of working. I guess what I'm saying is that it was easier when I had a "better luck next time" attitude. Now my attitude is "will there even be a next time, and if there is will it fail again?... and then what?"

I can't remember who said about the hair falling out but I did wonder if I was imagining the face that mine seemed to be falling out more than normal the last few times I've washed it. Although it doesn't feel thinner, thank god!

stogan great that you've got a bit of breathing space now. One thing that I am very aware of these days, whether it be to do with pregnancy or my particular circumstances at the moment, is that work, and even money can be recouped later - there are some things that are too precious to put second to that!

Iggi999 · 18/09/2011 09:15

It's my hair that's falling out. You do lose hair after a full-term pregnancy (I can vaguely remember) so I suppose my last pg had an impact too. Just another annoyance!
Freelance if you are even a little bit positive then you are more positive than me! I did do a clearblue digital test today and was pleased that it came up "2-3" weeks (af due tomorrow) as in my last pg it was at "1-2" wk4, and wk5, and 5.5...
But I've had perfect hcg levels in the past, followed by that nightmare scan experience.
A dear friend had a second trimester mc recently and that kind of demolished any hope I have of a positive outcome for me. But I know I have to have a pg (or 2) on the treatment before I could let myself give up, so it's a step on the road to that at least.

freelancegirl · 18/09/2011 12:25

Just a quickie from my phone re hair. They say it seems to fall out after a pregnancy as it has got thicker and stopped falling out when you are pregnant, so hopefully Iggi yours will stop falling out soon. I know mine felt like it went very fine after the first mc this year. I was also was wibdeung why mine isn't thinning now and us feeling thicker than it has for a long time, and dr google tells me that magnesium can indeed help with hair loss and up make it healthier. I started taking magnesium as dr google also told me it's s good one to take to help prevent miscarriage but the hair is an added bonus. Maybe you and others might want to take it? Think am taking either 100 or 150 mg on top of my pregnacare. That and selenium as well as the vit d, omega and aspirin.

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Iggi999 · 18/09/2011 13:04

I take a magnesium that's combined with D3 and also calcium (I think the calcium was to counteract the steroid effect).
I've spent a lot of time today thinking about how much I want to stop all this uncertainty, I can't bear to live with it anymore. But that I started thinking the only thing certain in life is death, so maybe it's better to just embrace the uncertainty!

digitalgirl · 18/09/2011 13:21

stogan glad to hear you're taking some time off.

I think we don't realise how much we're putting ourselves through until afterwards. During this first trimester I've thrown a huge party for DS's birthday, been to two weddings and a naming ceremony, attended three birthday parties, directed a one day shoot with a 5 year old and a two day shoot with a 7 and 10 year old, gone to a pub quiz, started DS at pre-school, started looking at primary schools for him, started planning DH's 40th birthday party. Not quite sure how I'm going to keep going if I have to wean off the pred.

Oh and iggi my hair is falling out too. It has done in my previous pregnancies since DS which freaked me out because I thought it was supposed to get thicker in pg. But I think it's just what my body does in the first trimester. It's not looking thinner, I think more is growing to replace it - and perhaps that's the stuff that stays put till after pg.

kittens glad you had fun at goodwood, it always looks like such a laugh whenever friends have shown me photos (haven't been to a festival since galstonbury in 2003 or thereabouts). I hope the break from ttc does you good, and eases the stress. And I hope you get to spend some good quality time with your mum. How long are you staying with her?

freelance I completely get what you're saying. I think it's natural to find it difficult to relate to people ttc and getting bfps when you're not directly in that situation yourself. In fact I found it extrememly difficult to relate to people with regular cycles just going a few days from AF to ttc again then the 2ww - while I was waiting weeks and weeks for a bloody egg to turn up. You may remember me moaning about it before. I think, as someone else said, it's purely a self-defence mechanism rather than anything darker. It's difficult enough being excited for your own bfp when it happens (I now find them to be a massive anti-climax), when we know there's so much more that has to happen before we can believe it means a baby. I'm pretty sure once you're back on the ttc wagon, the whole bfp/2ww thing will take on more meaning. I think it's good that it isn't right now...and hopefully that means time will go quicker because you're busying yourself with other stuff.

Speaking of not getting over-excited, I'm afraid I'm letting myself get carried away. I mentioned buggies to DH yesterday, and started talking about getting DS's sleep sorted (he currently joins us in bed every night from about 3am) in time for 'the baby'. It felt so weird saying it. And I almost wished I hadn't, but fuck it - if I have to post-pone all my hopes and dreams again then so be it. But for now, I'm thinking this baby will happen. I think I'm 10 weeks today - although by my last scan I'm only 9+5, will get a new measurement this Weds at St Mary's anyway. Fingers crossed it's somewhere between 10+1 and 10+3.

georgie when's your next scan?

Stogan · 18/09/2011 13:34

Crikey digital how do u do it??? Saying that when I was on the pred I felt like I could have taken on the world I felt great but sooooooo sick today it's awful. I've been completely off them for a week now so hope I start to feel better soon, nice knowing I don't have to go to work though, although I will still worry about it!!!
What times ur scan on wed? Good luck, sure all will be grand.
I see dr s at 2pm and can think of nothing else (well that and tomato soup ha ha !!) x

Havingkittens · 18/09/2011 13:36

I just wanted to apologise for my post last night. I don't want any of you to think I am bitter about your BFNs - far from it. I'm bitter about not being able to join you, that's all! And the fact that I don't feel excited on behalf of those having BFNs, well, I guess you all know that BFN = fear rather than excitement for us. But I do feel excited on your behalf when I hear of the good scans (even if I am also jealous as hell!). I was just trying to say to freelance that I kind of know what she is feeling as I also feel like I'm sort of looking in through a window at a world that isn't mine. Similar to what digi has just said about regular cycles etc.

Rationally I feel at the moment that I should take a break from MN as I am now officially not TTC until December and I am not in a great place emotionally at the moment, so worried about being such a dark cloud around here. I suspect that may not happen in reality because I am nosey and want to know how you lot are all getting on!

I can't remember what Mr S said about what would happen if I don't get a BFN within the 6 months. I will try to speak to his midwife tomorrow before I go. Wondering if he will do anymore tests or whether that's hoping for too much on the NHS.

digi, I don't know how long I am going for. I just booked a one way ticket and will see how the land lies when the test results come back in a week. I suspect I will just go back and forth a bit. If I get a call for a couple of days work I might fly back just to do that. You know how it is being self employed! I have a little next egg, but that was going to be my emergency IVF or private treatment fund. I'm going to have to draw on that though for now as I've already had to pass on quite a bit of work.

Better go. I need to go out and spend some time with my man before I disappear!

Best to all of you. xx

georgiepie · 18/09/2011 17:12

Kittens big hug, thats what I want to give you. I cant imagine what you are going through with your Mum and TTC worry on top. I really hope the break (although not relaxing for you) will give you a new focus for a while and that your Mum gets better xxx

Hi Digi good on ya for thinking happy baby thoughts. I hope to be where you are by week 10! I go for a scan at East Surrey on Thursday morning. DH coming with me as in the past its always been at that EPU i get bad news. I am really trying to be cautiously optomistic this time and keep thinking what Mr S said to Free - believe and have trust in his programme. I wouldnt worry about a couple of days out, mine were too and I know 100% when ov was. Its all going to be ok for you, your through that 9 week mark. Wink x

eurochick · 19/09/2011 11:29

There have been a lot of ups and downs on this thread lately!

I think I am nearing the time when I get the immune stuff investigated. I have an appointment with my NHS gynae in 6 weeks to get the results of my ultrasound, HSG and my husband's repeat SA, but I have already been told that my u/s and HSG were fine and my husband's first SA was ok, so I am expecting a "diagosis" of unexplained infertility.

At that point, I want to move to seeing a reproductive immunologist. I have a few questions. If some of you could help me out with a bit of info, I would be very grateful.

Do you all see Mr S or is there anyone else? I know ARGC now do immunity testing and a couple of other consultant names have come up on my internet research but as far as I can remember Mr S is the one I think you are all using.
Did you all get referred by your GP/gynae to him or did you (can you?) self refer?
He practises out of the Miscarriage Clinic in London. I am not having miscarriages. From my reading around (including the Dr Beer book) it seems like Raynaud's gives problems with implantation so I never get that far. Do you know if he sees non-miscarriage patients at that clinic?
What was the waiting time between being referred/contacting the clinic and your first appointment? I would ideally like to line up an appointment so it falls just after my NHS gynae appointment as otherwise I might run into the Xmas period.

Thank in advance to anyone who answers! I realise that I should probably call the clinic with some of these queries but as I work in an office with paper thin walls and nosy colleagues, I thought I would see if I could find out some stuff from the experienced posters on here.

Good luck to all with your treatments. I hope to be joining you soon!

Stogan · 19/09/2011 13:38

Hi euro

So sorry to hear of your struggle but you have come to the right place here !!!

I went to dr s after 4 miscarriages but as far as I know if u self refer he will see you for all sorts of fertility issues.

I self referred as my local NHS are useless and I'd probably still be waiting for an appt. ! I called the clinic in early feb and got my first appt with dr s on 26th feb, could have had it sooner but I was out of the country so the wait time in my experience has never been long.

I hope this helps. Any more questions just ask, between us all on here we've either experienced it or are going thru it !!!!

Best of luck hunni xSmile

digitalgirl · 19/09/2011 14:05

euro I've heard Dr Dimitri at the ARGC also does research into immune probs - so he might be the best one to get an overall fertility check-up with. I'm not sure what Dr S does about assisted conception (other than the superovulation program), but I know that ARGC has the best success rates in London and my friend's SIL went there and is now heavily pg with DC#2 (she'd had one mc, then her ds, then 18 months no ttc success).

kittens hugs to you, even though we're all currently in different situations we all understand why you feel so down at the moment. I honestly didn't think you came across as bitter, but I wouldn't blame you if you did. TTC, especially under our cirmcumstances, is an emotional mine-field and there are going to be times when you can just about deal with your own situation let alone process how others are feeling. At times like that I did tend to self-impose MN breaks, but curiosity always gets the better of me in the end too!

freelancegirl · 19/09/2011 21:11

Hi all, been without internet access all weekend hence only short posts from me. Euro am pretty sure Mr S sees people who aren't implanting as well. Like you said, Dr Beer's book seems to indicate that is down to high NK cells and it might even be classes as a very early miscarriage.

Kittens I too am sad for what you have been through and are going through. I am not yet affected by people getting BFPs as I have only just had one then not had one myself but i imagine if I struggle to conceive next time how it could get to me. Same with you digi and the long cycles. It must have been very frustrating for you. Hopefully that it is all behind you now.

I am really hoping that I have some positive news tomorrow in the form of that longed for post-mc period. I am having a tiny bit of brown cm today and it will have been 33 days since ERPC tomorrow and 18 days since what I thought might have been ovulation. It would be such a relief if my cycle starts getting back to normal.

digi I think you need to allow yourself a little bit of forward planning and optimism sometimes and thinking about how you might juggle the childcare is a good start! Face it, we know that realistically nothing you can do or say will change any outcome and you allow yourself to stress about it, so you might as well allow yourself to be happy about it too!

Hello to all the rest, sorry it is a quickie from me but trying not to over do teh typing and rest the hand xx

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