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.

Iggi, we'll all be thinking about you on Monday. The waiting is hell isn't it.
Battery hen - have you used clexane before at all? I've only done it twice but I've managed to leave bruises. Not sure if that's normal or not.
Well, the pred is really kicking in now and i'm knackered. Was awake for a couple of hours in the night worrying about the Buzz Lightyear cake i'm supposed to be making for ds's birthday next week (displacement anxiety I think - I'm normally like that). It's been a similar pattern all week. I've got a bloody essay to write today too and I can hardly keep my eyes open. Gah.
Hope everyone is having a good weekend.

Thanks so much free and thanks to your DH too, they arrived safe and sound this morning! Now if only I could get an appt to see my GP .. I think sometimes it might be easier to get an audience with the Queen!!

Arian - The whole getting an appointment with your gp thing is crazy in some places isn't it. I sprained my ankle quite badly earlier this year and needed a physio referral. I had to wait 2 and a half weeks for the appointment. Are you feeling a bit calmer about your diagnosis now?

Coconut - yes I have done the clexane before. The trick is to get a good pinch of skin, put the needle in quickly but inject slowly. And most of all DONT RUB it after or you will bruise! And don't do it where waist bands can sit and rub on it.
Sorry to not name check but am on the phone as we have just moved house and not on line yet! Hope everyone is ok though x

Thanks battery! I think I'm faffing around and putting the needle in too slowly. Actually I yesterday was better as I don't seem to have a bruise from that one. I'm such a wuss about it though.
Hope the move went well and things aren't too chaotic. We really need to move (in one bed flat with toddler and potentially another on board) but we've been putting it off as neither of us can face it.

iggi thinking of you for tomorrow. I really really hope everything's ok. Have everything crossed for you.

battery well done on the move, hope you're settling in well.

coconuts in all the panic of med-swapping last week I don't think I congratulated you on your good scan last week. When is your next one?

free what a good man your dh is! Hope you're having a lovely time being pampered by your parents.

ari my sympathies with your difficulty getting in to see your gp - I didn't bother with my first prescription as I was about to go on holiday and was hoping to ov while I was away - so paid full whack for the private meds. In the end I didn't ov for bloody ages.

Well I'm about 12 weeks today so I took my last full dose pred tablet today. Tomorrow I have an appointment to see the gp and get the 5mg tabs and go down to 20mg. I'm wondering if he'll have a Doppler - is that something gp's have? Or maybe he could use a stethoscope to listen? Either way I think I want someone to check for the hb this week as my nuchal scan isn't till next week.

iggi thinking positive thoughts for you.

Hello, just out. I'm sure I'm 6 weeks already (just) but scan showed a fp of 4mm which they said was less than 6 weeks (anything less than 5 is I believe). They saw a heartbeat.
I don't know what to think, what to do - hope is such a dangerous thing for me, my worst mc have been the ones I let myself believe in!

oh wow iggi seeing a heartbeat at such an early stage is surely a good thing for now. I know it's very hard to think positively, in case it still goes wrong...but maybe an attitude of 'pregnant for now' might be less emotionally exhausting than 'waiting for it to go wrong'. Hope that doesn't sound too finger-waggy (which is probably the last thing you want). Such early scans are notorious for not providing complete reassurance (hence me sticking my head in the sand till 8 weeks) - but at least you've been reassured that something is there, and it's heart is beating away despite all the stomach pains you've had. Is it worth sending an email to Mr S and asking advice re: the pain?

Great news iggi. I understand your trepidation, but all you can do it take things one step at a time.

I have a question for anyone who's come off pred after long term use. Are the withdrawals any different to coming off between the 2 week bouts? (OV-AF) I have been feeling really crappy these last couple of days, kind of achey, hot and cold and tender skin, a bit like when you're coming down with something. My body would've been expecting my steroid input to start again at the end of last week so I was wondering if this was likely to be withdrawal. Or whether I just have a lurgy. I'm a bit concerned as I am supposed to be going back to France on Wednesday and don't want to put my mum at any risk of infection as she is already very weak.

kittens I've just taken my first bunch of 5mg tabs for the 'pred weaning' today - so I'll let you know if I feel dodgy over the next few days. It might be completely psychosomatic but my 'treacle head' has returned and I'm feeling rather tired today. No aches and pains though. It does sound like you're cmoing down with something. Hopefully you'll be over it in a couple of days?

Thank you Digi, I need some finger-wagging, you are right about the emotionally exhausting bit! Have spent the afternoon feeling quite achey (do they have to press so hard for the scan? I guess so) so optimism fades fast!
Glad I have Mr S next week.
Havingkittens to be honest I felt worse coming off after the usual 2 weeks than I did when I last mc, though I was only on them for 3 weeks IIRC. Headaches and general unwell feeling I think.

Hi everyone, just a quickie from Spain. Great news Iggi about the heartbeat. Amazing to see it at such an early stage and should surely be a good sign. Like Digi says just try to take it every day as it comes. I think if/when I get pregnant again I really want to try to pretend I am not, if that is at all possible.

Digi good news for you too, getting to 12 weeks and coming off the Pred slowly!

On that subject, Kittens I have been pretty up and down since coming off the Pred and I was on 40mg of course. Even weeks later I am getting random body aches - like when you're coming down with the flu - and also tingling in my feet and fingers. I have no idea whether it is related but I have a feeling it might be. I think it's a not very nice drug tbh.

Seriously though, does anyone else get achey/stretchy pain after an ultrasound? I have felt craqp for hours now. (Last self-indulgent post for today I promise! Just freaking out )
HK hopefully you'll start to feel better (or worse even) soon, so you have an answer about whether it's the withdrawal or a bug. Not what you need on top of everything else.
How is Spain free, hope you are still being looked after

Iggi, really good news. That early stage is so hard isn't it. I think the best thing is to try and disengage from the whole process as much as possible. Easy to say, but really hard to do - I know I'm struggling with that as well, just trying to take one day at a time. I have to say i haven't had pains after a scan, but have had quite a few at other random times.

Kittens, thanks for your good wishes. I'm due for another scan next week so not too long to wait. Sorry you're feeling rough . I hope it passes soon.
Sorry not to name check everyone. I'm crawling off to bed.

Ahh, I'm starting to feel a bit more normal again. I have been feeling rubbish since Saturday so maybe the lurgy has run it's course/withdrawal has passed. Or maybe it was a stress reaction to all the stuff that's going on in my life. Who knows? Things regarding my mum are looking pretty bleak so it wouldn't be unfeasable if that were the case. I am pretty much having to come to terms with the fact that my mum has aggressive, stage 4 cancer and doesn't want chemo anymore, which leads to a sad and inevitable conclusion.

iggi I've often ended up having funny pains after ultrasounds. It's not surprising after all that pushing and prodding.

. Sorry to hear things are as bad as that Kittens.

Hope you're feeling better and that the pains have subsided today iggi

kittens I'm so sorry it's not looking good for your mum, I hope you get to spend as much quality time with her as possible.

Kittens I am so sorry about your mum.

Iggi that is really good news about the heartbeat.

I took the plunge today and emailed Mr S's clinic to see about getting an appointment and to ask if I needed a referral, etc. So I might have proper reason to join this thread soon rather than just being an interested interloper!

Hi ladies

Just checking in to see how everyone is doing after my weekend in Paris !

Off to get hb checked AGAIN tomorrow at 8.30, will I ever relax !???

Looking good Iggi xxxx

Thanks. I'm off to France again today. Mum's home from hospital and sounds much brighter and cheerier, like a different person. I'm really looking forward to seeing her.

My OH reckons he has what I've just had so I guess it was a 48 hour bug.

Hey everyone, hope you're all doing well? Been off on a first aid refresh course the last couple of days, so just catching up with what's been happening.

I'm now on the 25mg pred, started yesterday (thank you free :) ), and so far had no rushes of super-energy, more's the pity . I am wondering what I'm in for with the full regime, but guess I'll find out soon enough!

I finally managed to get an appt with my GP for tomorrow morning, so I'm desperately trying to cobble together enough info to persuade her to accept Mr S's findings re the hypothyroid, and I'll consider it a bonus if she'll prescribe me the pred/omeprazole/cyclogest.

Off to research intralipids now ...

So sorry I have been MIA for a wee while, I have been lurking when I can and keeping everything crossed for you all. I have tried to have a break from thinking about pregnancy for last few months to get my head together.

Kittens - So sorry to hear about your Mum :(. Life is so cruel sometimes.

Iggi how are you doing? Are you still getting cramps and feeling rubbish after your scan?

Free so sorry about your loss. Hope you are ok and having time out before trying again. It is scary and you never think you are strong enough to put yourself in that position again, but we absolutely are.

Congratulations Digi, wow 12 weeks!! That is awesome.

Hello to everyone else Euro, Stogan, Arian, Coconut, Battery and anyone else I may of missed. Hope you are all well.

Got a BFP last week after taking Clomid. Started on 25mg of Pred, Clexane, double dose Folic acid, and Progesterone 5 days ago and feeling good. A bit fast and frenetic on the steroids but hubby finds that hilarious so every cloud I guess :). Had my first Intralipid this morning which went ok. Scan booked for 17th of Oct. Just trying to think nice thoughts and stay sane until then. Am going to GP next week to see if I can get these meds on the NHS, will keep you posted.

Yey brownie Congrats hunni
Everything crossed for u xxx?

Wow Brownie that's great news. Cautiously optimistic mini Mexican wave back at you. Doing the intralipids feels odd doesn't it? Wired up to some drip in a random clinic somewhere.

Hi all, I've been travelling back from Spain today and also today is the due date of my first mc of 2011 (the first one that counted and the first where I actually, naively, thought I might be 'having a baby' so that all feels a bit weird and upsetting. But these things are bound to upset us aren't they.

Kittens really glad to hear that your mum is sounding brighter. Hope it all goes ok in France. Ari glad you started the drugs :) let me know if you need any more now I am in the UK and can post you some. I am actually trying to work out, by a process of elimination whether any of the meds/supplements I am taking are causing the weird symptoms I have been having - tingling and some numb feelings and vibrating in my hands and feet - are down to that. I am reducing thyroxine by 25mcg a day for a bit (test in Spain showed was slightly on the over active side - TSH of 0.015 if anyone is interested!) and also cutting out the Magnesium as these symptoms seemed to start when I started taking that.

I also have some more Mr S news, potentially. When i got home this afternoon I opened a letter that had arrived from him when I was away - that summary he sends you after an appointment - which said he had been thinking about my very high cells and they might just be too high to deal with with high dose steroids and intralipids!

At the appointment he did tell me about one patient whose cells were extremely high like mine and she kept having mcs on the treatment. He finally tried out giving her hydroxychloroquine (anti-Malaria tablets) as an experiment to see whether they would help - I think he said something about them also suppressing the immune system - and she went on to have a successful pregnancy. In this letter he says he is considering the possibility of trying me on them too. I have taken them before for travelling once and they weren't too bad, although no anti-malaria drug has been much fun in my opinion. Worth a try maybe, am not sure. He says it is something he is still thinking about.

Welcome back Stogan and good on you to Euro too for making that appointment. Hope iggi is feeling better. And waves to Digi, Coconut, Battery, Scooter and anyone else I have missed too.