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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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ChoccyPud · 18/10/2011 08:34

Oh iggi I'm so sorry... Go get scanned asafp. Thinking of you.

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iggi999 · 18/10/2011 08:31

Pud S's midwife told me the pred could delay af - don't know how much though. If you're happier taking it till day 14 why not?
Well I made it through my disaster day yesterday, woke up feeling a bit more confident, and now there's blood in the toilet. This is just so cruel. Will probably call epu when they open, though what is the point really.

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ChoccyPud · 18/10/2011 08:12

Morning all! Another BFN this morning but it's still only 12dpo so I'm not due for ~2 days. Am now mentalling and trying not to micro-analyse every twinge and boob-ness esp as I don't always get much in the way of pre-af or early pg signs, plus the Pred masks symptoms anyway... Help!

After last month I don't want to stop taking the Pred until I know I'm def not pg, which I'm thinking means keeping going until I get af properly AND a BFN. I don't want to do anything that'll do any harm either way but equally am a bit paranoid after what happened last month. Does anyone know if keeping on the Pred will cause problems or eg stop af arriving?

Sorry this is so "me me me"...

Free I've been there, it's just suddenly come up close that it's back to ttc for you, having been on "pause" for a while. Absolutely it's scary because we can't help thinking the worst might happen again, but I think you just have to keep saying to yourself that if you don't try, granted the worst obv won't happen but there's also no chance that the best will happen either.

Have a good day all!

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freelancegirl · 18/10/2011 00:02

The OP was me! And yes, it's getting nicely populated in here. BTW we will have to keep an eye out as we will need a new thread soon I think.

Just a quickie from me as have had a really busy day. Impending tax checks from the Inland Rev mean gallons of receipts to go through, the kitchen flooded, the boiler is bust and on top of that I am having to work day and night to get all my work done! In an edit all day again tomorrow and next day. Still haven't managed to get hold of my new meds - GP appt tomorrow before work to convert prescription and hopefully run to chemist and stock u.

I got a letter yesterday from the Inland Rev. Oh, I've just realised I have written this already!!! I've been trying to sit with the receipts and work it all out. SHit, my brain really is stuffed today.

I have developments too - I had been having cramps and sugar cravings all day and, well the short version is I think I have started a period. First proper one after the WTF cycle, around CD27/28. I was so overwhelmed I found myself sitting down have a cry. I am not upset or sad, just hormonal but also a bit overwhelmed at what the near future might hold - it's very scary to think that in 2 weeks I will be back on the Pred and 'trying' again. And that means that very scarily I might soon have the potential to be pregnant again. And of course that means that very soon I will potentially be miscarrying again. I think that's why if feel a bit overwhelmed at the whole prospect. It's been quite nice being in non-pregnant, non ttc, no drug necking limbo.

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eurochick · 17/10/2011 23:21

Just a quick one before bed. Digi I did eventually get my appointment for 21 Nov. They called back while I was abroad for work so my secretary made it. Which no doubt means that the whole office now knows I am ttc....

I can't believe how this thread has filled up. And the OP doubted there would be enough people interested here!

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Coconutfeet · 17/10/2011 21:45

Hello and welcome to choccypud and Emijo. Emijo ? Really sorry to hear that you?re waiting for another ERPC. I hope it goes as well as it can and that you?ve got some lovely support in RL too. We're all here for you if you need to let off some steam.

Ari ?I hope your GP comes good with the prescription. It?s really important that you?re happy with your treatment. Sorry about the BFN.

Iggi ? It?s absolutely horrible playing the waiting game isn?t it. When are you due your next scan? Please try not to panic about your thyroid. I didn?t have any tests with Mr S until I was 6 weeks pregnant and didn?t get the results until a week later. When they did come in my TSH was 5.9 and I only started on thyroxine at 7.5 weeks and (fingers crossed) so far, so good. You?re addressing the issue now which is the important thing. I totally understand that feeling of panic though.

Digi ? Glad you?re starting to feel a bit more human. How exciting about having a proper bump. I feel enormous at the moment too. I?m not going public at work till I?ve had my 12 week scan (which should be next week but I?ve had no sign of an appointment and no-one?s returning my calls) and it?s getting more and more difficult to hide. I assume it?s the pred that causes the bloating? Does anyone know?

Freelance - have you started the new meds yet? Very Envy of your wild night out BTW.

Comedy ? I also wanted to say that my heart went out to you when I read what you?ve been through. I cannot imagine how terrible it must be to lose your child. You really deserve some good luck for a change. Also, you mentioned that you were in teaching ? what do you teach? I?m primary ? Year 5 at the moment.

Right I?ve got to go to bed. The lack of sleep is really starting to get to me now.

Night all.

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Comedyworks · 17/10/2011 16:43

Hi all and thank you for your kind comments about my son I do appreciate them.

Iggi - I agree with Free and am sure this will not make a difference it is the NK cells that need a bashing and the steroids are working away doing that. I haven't even got inti the lower range that he wanted before getting pregnant and so am not entirely sure what my levels are. I really understand where you are coming from though as this is a really hard time of constant worries - I feel even sicker (if thats possible!) every time I think of Wednesday.

Digi - 14 weeks - congratulations and hope you are relaxing a bit more now (obviously you are when you get a seat on the tube!)

Take care all

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iggi999 · 17/10/2011 15:12

Thanks Free, I was hoping you'd read Smile I don't think anything would calm me just now other than a very long drink, the one thing I can't have! Looks like you'll be back on the road again, in a day or two..

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freelancegirl · 17/10/2011 15:02

Hi Iggi just a quickie from me as I am really busy but I just wanted to step in and say don't worry too much about the TSH. Yes ideally it is good to keep it around the 2 mark or below when pregnant but realistically 4 is still not too high and a lot of the time people wouldn't even treat anyone with a TSH below 5. Am pretty sure that it has caused no problems whatsoever and it is good that you are not taking a bit more thyroxine. Does that mean you are now on 225mcg?

Also to iggi I can completely relate to the being tired of all the med taking, nicker checking, agonising over every symptom or non symptom. I am so enjoying not doing that at the moment! But looming on the horizon is the whole kit and kaboodle (sp?) again.

Ari I can't help you on the folic acid query as it's not something I have (yet!) needed to look into but I hope you work it out. The glucose test is interesting, I was considering having one done myself too. It's to check that the Pred isn't affecting your blood sugar levels I think, as it possibly can. I was going to get mine checked as I have had (or been imagining of course) some symptoms that might relate to high blood sugar such as sugar cravings and thirst. But haven't checked it yet and seem to be not so bad now.

Actually I have sugar cravings and a bit more PMT like feelings today. Am on CD27 post WTF AF and wasn't expecting AF until at least CD33 but will see what materialises!

Digi that is great news that you a) are 14 weeks and showing b) that you can now safely kick people out of seats on trains and c) managed a wild night out :)

Hello to all, gotta run xxx

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iggi999 · 17/10/2011 14:34

Hello, not a random moan this time but a thyroid fear! I have just got blood tests from a week ago back, and my tsh is up to 4.10 (when I found out I was pg I had it done and it was 2.9 - I increased my dose by about 10 mg) Doc has told me to put it up by 25mg beyond my pre-pregnancy dose of 200. But I've spent a week or so now with an out-of-range tsh, that must be it now surely? God I am so freaked out.

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ChoccyPud · 17/10/2011 14:01

Am on iPhone at work...sorry for any stupid typos.

Ari sorry it's def no "positive" news this month but i think you're right to be pragmatic about it. Glucose test seems standard tho I can't remember if there's a particular reason.

Sleeplessness is shite - I feel really detached at work today, concentration and retention on details non existent which isn't ideal given what I do for a living. Not sure there's anything you can do except try to take a bit of exercise in the evenings to use up some Pred-fired energy. I tend to get v tired and dopey about 5-7 (perfect for drive home) then dont feel like a trip to the gym but perk up at bedtime esp towards the end of the month. Like now. See you here at 2am sometime! :(

Congrats on 14weeks digi fantastic! iggi try to stay positive or at least neutral and wait for Friday. You never forget the previous "furthest" but you're doing everything you can to make sure this one works.

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Arianrhod · 17/10/2011 13:16

Woohoo digi, 14 weeks and a second-trimester bump. You're going great guns! :)

Yep, def. sure of when I OVd and def. out for this month, started little bit of spotting this morning which is usual for day-before AF arrives in full force, and bang on the nose at CD27 today. No matter, onwards and upwards.

Saw Mr S and he sent me to the pathology lab for another blood test, this one for blood glucose levels. Not sure why, stupidly my brain was too fuddled/asleep to ask (five nights in a row atrociously rubbish sleep and I wasn't prepared to question anything much), but he also told me to start taking the omeprazole alongside the 25mg pred next cycle since it upset my stomach this cycle. He didn't suggest anything that could help with the sleep upset though, sadly :)

I did ask briefly about his thoughts on taking l-methylfolate instead of synthetic folic acid and he seems to think it's not necessary. I'm wary about this though - there's a lot of medical evidence out there (proper evidence, studies and the like, not just hearsay) that backs this necessity up. But I guess Mr S is speaking from an expertise in his own field, yes?, which isn't the same as those whose field includes the study of the long-range effect of this particular genetic mutation I suppose, so while I truly respect Mr S's opinion and obvious expertise, I'm still going to ask my GP to switch my prescription from folic acid to metafolin (Merck-branded l-methylfolate, which I think is the only prescription variety of this in this country). Hopefully she won't mind, and if nothing else it will just give me peace of mind.

Hope everyone else is doing great today?

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digitalgirl · 17/10/2011 12:58

ari sorry no luck this cycle...but is it still too early to call it? What dpo are you today? Are you absolutely sure when you ovulate? Good luck with your appointment today. I had one of those 'see me after 1st cycle of pred' appointments, although I waited until a few weeks into the next cycle. It was actually really helpful for me because I was able to raise my concerns about my cycles still being really long.

free Camden was good thanks. Managed to get there about 10 minutes before sis came on. Then left just after midnight, feeling quite rock and roll! Glad to hear you're making the most of your non-pg time too.

choccypud like the abbreviation! It makes me want one right now!

comedy sorry, I didn't mention it before...I do remember you mentioning your DS before, it never fails to sadden me just how much you've been through. Good luck with the scan and intralipids on Wednesday. Have everything crossed that all will be well.

iggi These mc milestones are bloody hard aren't they? But, as I said before today you are pregnant...and you will be right up until your scan on Friday when hopefully you'll be even more pregnant! You just need to get through to the end of today to feel like the 'curse' has been lifted. Thinking of you.

stogan when's your 20 week scan?

scooter are you 10dpo today? Any testing news? Smile

euro did you get your appointment?

coconutfeet do you have another scan coming up soon too?

kittens hope your mum's doing well and you haven't had any fisticuffs with your stepdad.

emijo and suemays hope we haven't scared you off and you're still lurking out there.

Think limbs aren't as achy today and headache has definitely subsided. I am 14 weeks today. For the past couple of weeks I've been turfing able-bodied young men out of the 'reserved for old people and the pregnant' seat on the tube. And now I have a genuine second trimester bump that can justfiy this.

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iggi999 · 17/10/2011 10:09

7+6 today and have realised this is exactly the time that I had scans where the hb had stopped with 2 of my pgs. So have convinced myself it will all end today. Tired of the twinges, pains, and staring at the toilet roll. Have tried saying all this to dh but he doesn't quite get it.
Ari is it you who has an appt today? Good luck with getting more info.

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ChoccyPud · 16/10/2011 17:13

Sorry to hear that Ari :( let's keep fx for Halloween...I can hear the dodgy jokes about conceiving on Halloween being formed in dh's mind already Hmm

Hope all goes well tomorrow - And it's not too late to find you're pg this month anyway!

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Arianrhod · 16/10/2011 16:50

Afternoon ladies, just thought I'd stick my head round briefly to say ... as predicted, I'll be waiting for some kindly witchy spell for OV time on Hallowe'en, my second FR test blew a big fat raspberry at me this morning. Seems a bit of a waste of time trekking all the way to see Mr S tomorrow now, just to report ... well, nothing really! But I know he wants to see people after their first round of pred - and oh what a delight that was. I'm so pleased I'm not taking them for another couple of weeks (albeit tinged with some wistfulness as to why I'm not still taking them, I suppose), and I really don't want to think about what the higher dose will be like! I've had rubbish sleep for the past three nights and my first ever (in my life!) experience of crippling indigestion not once but twice yesterday. I'm presuming this was all courtesy of the pred. Nice stuff we're taking!

Welcome ChocPud and sympathies for your own BFN this morning. It's a bugger, this waiting game, isn't it?

/waves to everyone, hope you're all having a fun/relaxing (whichever you prefer!) weekend. In a moment of "oh bugger it, if I'm not pregnant I might as well" madness I made the hour trip to Reading to the O2 shop to treat myself to an iPhone 4S (since my 3GS is starting to throw problems), having telephoned first to make sure they had what I wanted .. to find a queue of people outside the shop, being handed tickets to wait in line for a phone, and they'd sold out of the one I wanted anyway! Blow that for a lark, life's too short to queue for a flippin' phone, I'll wait till it's available online. I knew there was a reason I hate shopping (other than online)!!! Should have known better ...

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ChoccyPud · 16/10/2011 13:35

ChoccyPud it is then :o

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ChocolatePud · 16/10/2011 13:33

Thanks free good to be here. Nickname was suggested by my fave choice of dessert and on the basis that if I end up popping almighty 40mg Preds for months I may as well think about lovely chocy stuff even if I can't have TOO many! ChocPud is already in use so although I answer to most things Wink I'll have to stick with the long form or get more creative! I'll see if ChoccyPud works...

Anyway, BFN this morning but no huge surprise at this stage as we all know. Will go again on Tues.

Not seen if Ari has tested again??

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freelancegirl · 16/10/2011 11:47

Hello all! Welcome ChocPud as you are now known. Or maybe Pud? That's cute! It's good to have you here with us, although sorry about your losses of course. But we are really getting a bit of a gang of us now! It is indeed great for swapping info, support and just generally a relief to have other people that speak the same language of hard core drugs and mysterious drip feed afternoons spent in random clinics.

So you are testing today Pud? Let us know how it goes! I agree about the taking of the Pred a couple of days longer. It surely can't due that much harm. Or that much more harm should I say.

Comedy my heart went out to you when you mentioned your DS. I guess you must have told us before but it is unspeakably awful. Do feel that you can talk about these things with us if you need.

digi sorry you are having side effects. I had limb aches and muscle aches too. Let me know if you get any weird vibrations in your bum Grin. My limbs have stopped aching now (including the carpal tunnel symptoms) so that is a great relief. Must have been down to the Pred withdrawal. But I am also keeping a careful eye on it. How was the gig in Camden?

I was out last night too- although probably drinking a damn sight more than you were :) It was a great night actually, drinks round a friend's house, pub with more friends and then even dancing! Staggering home from dancing we found a pub that was blaring out music with everyone singing along and went in for another couple of drinks. It was fab! I woke up at 6am feeling very bad about drinking etc but hey, I might be pregnant again soon so I guess I can enjoy it while I can. Need to make sure there aren't too many nights like that though due to imminent ttc.

I too was really bloated on the progesterone last pregnancy. Really annoying to look so pregnant when I didn't actually stay pregnant.

Good luck everyone with scans and testing etc this week! xx

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Comedyworks · 15/10/2011 23:16

Digi - I had some really bad side effects coming of the pred on the first cycle - was told to drink as much water as possible, not rocket science I know but hopefully you'll start to feel a bit better soon.

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Comedyworks · 15/10/2011 22:56

Mine is Wednesday for scan and intrallips - I'm the same Iggy - within about 24hrs the positive effect of the scan was diminished!

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iggi999 · 15/10/2011 21:55

Digi, hope the after-effects start to wear off soon, that doesn't sound like fun!
My next scan is on Friday at local EPU. I've discovered I "believe" in the baby being alive for about 2 days following a scan, then that's it!

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digitalgirl · 15/10/2011 21:40

chocpud welcome! Good luck with testing this cycle. I'm sorry for your losses - you're amongst sympathetic ears here.

comedy and iggi when are your next scans?

Today is my first day of no pred. I woke up with a thumping headache and my leg muscles are absolutely killing me. All I did was go for a short walk in the woods yesterday with ds for a bit of fresh air. Does not warrant an entire day of feeling like I ran a marathon. So I'm guessing that's a withdrawal symptom from steroids. Hope tomorrow is better. Am going to nap now as have to go out at 10:30 - dsis is singing at Koko's in Camden tonight.

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Comedyworks · 15/10/2011 14:24

Thank you chocolatepud and hope all your treatment starts to work soon. Sure will feel more confident after next Wednesday.

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ChocolatePud · 14/10/2011 22:22

Comedy I'm so sorry to read about your ds. Saw your post after I'd posted mine. You definitely are due some luck and hopefully next week's scan will make you feel more confident about this pg. You may already know this, but one of the things Mr S told me was that at 8-9 weeks the placenta takes over, meaning that the NKCs should hopefully be beaten and the pg is more secure.

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