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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 · 22/08/2011 11:01

georgie no, I wasn't on met before seeing Mr S. I've always had long irregular cycles. A scan showed my ovaries to be polycystic in appearance, but because my hormone levels tested within normal range no doctor would give me anything to regulate my cycles. Mr S prescribed 1500mg of Met and said I may see some effect on my cycles after a few months - but if anything my cycles got even longer. I was about to start superovulation next cycle but got a bfp on this cycle.

ari he'll suggest pregnacare plus, vit d3 and 75mg of aspirin - he usually recommends you're on this for 8 weeks prior to conception. Depending on your nk levels he may put you on 25mg of pred from ovulation and then once pg you start cyclogest. If you have very high levels of nk cells he'll up your pred dose to 40mg (as with free) and a course of intralipid treatment. .

freelancegirl · 22/08/2011 11:19

I can't add anything about Metformin as am not on it but I will second what Digi says about the aspirin and the vits. If you haven't already, do start taking them now:

Pregnacare plus
vit d3
75mg of aspirin

All ok here I think. No real bleeding since the day of the op but a bit of pink clear liquid every now and then. Now idea what it is. A few twinges but no real pain. I too am just looking forward to my next visit with Mr S now and wondering what he will say. I read somewhere online about someone having a further 6 mcs when on treatment before going on to then have a baby. So it does happen! It seems perseverance is the key. My next worry is of course will my cycles return and can I bloody get pregnant again. Sigh....

Hope all is well with everyone else xx

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georgiepie · 22/08/2011 16:33

Free i had that type of blood and realised a few weeks later that it was a v v light period as it was 5 weeks from the ERPC when I had my next period which was still fairly light compared to normal.

I spoke to Louise this morning who confirmed just how important continuing with the Metformin is. I told her this time I am not planning any other tests and will simply wait to see Mr S on 15th Sept. What will be, will be, or wont be.

I wont be doing the perservance method as we had already decided next cycle was going to be the last so if it doesnt work with everything that we are doing, we will put it down to our old age!

Im on holiday countdown!

xx

digitalgirl · 22/08/2011 18:59

free glad to hear recovery is going well. I think I spotted for about 10-12 days post erpc, and got my next af at 57 days post erpc. But then I was expecting it at 60 days (from experience) so 3 days earlier was a bonus. Fingers crossed your cycles return to normal soon.

freelancegirl · 22/08/2011 19:09

Those three days must have made up for it all... Oh I am glad we can chuckle about these dark days....60 days must be so frustrating for you though, really. I remember after my mc in March I ovulated more or less 14 days later and of course had a WTF style period after that. But I had 'retained products' for quite a while so a bit of sporadic bleeding as well. Not sure whether I will be so lucky after an ERPC though, as it might be totally different. Did you go back for a scan to check it had all gone?

Great news on the holiday Georgie are you going to Mallorca? I love Mallorca! Such a gorgeous island. I don't blame you for having a go and that not persevering after a while. I think if I already had a child and was a tiny bit older (although I am aware I am getting on a bit too!) I would draw a line under it after a while too. I always thought I would want more than one child but now am thinking just one would be nice!!

Are we all seeing Mr S in the same week? Shame we aren't scheduled in at the same time so we could meet for a drink. I am in Epsom on 8th Sept. Gosh, it was lovely to have a drink on the weekend by the way. I had a rotten hangover yesterday after hitting the sparkly wine in my friends sunny garden at 4pm on Sat and ending up still there and dancing under the stars at midnight. Although I would obviously rather be successfully and healthily pregnant than just having had a miscarriage, there as some things about NOT being pregnant, NOT being in that horrible early stage when you can't tell anyone, NOT knicker checking and worrying about scans and being able to eat and drink what the hell I want that can certainly help ease the process if not compensate.

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georgiepie · 22/08/2011 21:13

Yes off to Mallorca and it can't come quick enough!

It would of been good to all catch up in Epsom, hey at some point I'm sure we will. Xx

digitalgirl · 22/08/2011 21:33

I've postponed my Mr S appt because it was so soon after my St Mary's scan - I wanted one in Harley St but they don't have anything till 25th. So may go to Epsom sooner (haven't decided yet), seems as though they have much more availability down there.

free I know that feeling of (almost) relief to not be pregnant. And the release of knowing you can't ttc for a bit just eases the burden of 'being good' a little. Good for you for having a drink and dancing till dawn!

georgie enjoy your holiday. Have you planned lots of things to keep you distracted or is it a book & beach type affair?

Am 6 weeks today. Not at all tired, wondering if that's the effect of the pred. My skin is still great too (apart from the eye bags) - no spots, and no dry skin on my fingers which I normally get every few weeks. So the steroids are definitely having some positive effects on me. I'm nearly onto my last two weeks so I guess I'll need to book an appt with my gp soon and see if he'll give me some on free prescription. That would require telling him...

freelancegirl · 22/08/2011 22:41

I think that's sensible Digi, based on my experience of early scans too. And if you have scans elsewhere there's no point in wasting money on his too. I did wonder is there anything he is looking for that other people aren't? But my rudimentary knowledge would lead me to believe that no there's nothing he can see that any other monographer can't.

Am glad you can relate to that 'almost relief' at not being pregnant. That's a really good way of putting it. One a very dark corner of me is almost like I am almost pleased (that's the wrong word of course but I can't think of a replacement) that my fears were justified. And proven. Does that sound terrible? It's a funny old psychological process this post-mc business isn't it!

Glad that the steroids are actually having a good effect on you too Digi! I am pretty sure I have a slight moon face thing going on! I have been less hungry too, but still hungry. Today I took 20mg and 2 days time I will be on 15 and so on. I am actually reducing it a bit faster than they said, every 2 days instead of 3, but am so looking forward to getting off it now it is not doing anything IFKWIM.

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digitalgirl · 23/08/2011 20:50

I've just seen that the lovely PrettyVacant has had a little girl. She's the first person I met on MN who had steroid treatment for NK cells. So lovely to hear of a happy ending. Smile

georgiepie · 23/08/2011 21:25

Ahh it does help hearing lovely news like that. Sounds like you're doing well Digi. Gosh I have spots and am so tired! Keep waking up for about 3 hours during night. I am trying to think of anything else apart BFP and have decided to buy books during holiday chill time!

Free how are you hon? Do you feel better on less Pred?

X

Havingkittens · 23/08/2011 22:36

Lovely news about PrettyVacant. It's always good to hear of positive stories.

Not much to say here apart from the fact the my AF is due any time from Thursday onwards (my cycle is a bit variable) and I have that same cramping that I seem to be getting every month in the few days before I'm due so I'm not holding out much hope. I'm about 12dpo and no BFP as yet. Not feeling massively hopeful and a fit fed up that it's proving to be so much harder this time. I've really been trying a lot harder than I ever have in the past too. I can't help wondering if the Prednisolone are interfering with my fertility, but then again there have been a few BFPs on this thread since it started so maybe it's just me getting old now Sad. I had blood tests last Friday to measure my FSH and LH because of my rather insignificant periods so I guess I'll see what the results are before I resign myself to a barren status! Maybe I'll be surprised and get a BFP before I get a chance to get my results back but I'm definitely not holding my breath.

I never used to have cramps in the week before my period before my last miscarriage either, so I do also still have a niggling paranoia about Ashermans' but from what I understand the pains can be quite bad and mine aren't.

Sorry about the moany post. I was fine yesterday but since I started feeling like my period was coming I'm now back to being despondent. Grrr!

Anyway, how is everyone else doing?

freelance are you ok? I totally understand what you've been saying about the strange and paradoxical sense of relief. I think when you've been in limbo for so long it's nice to just know where you're at and step away from the anxiety.

freelancegirl · 23/08/2011 22:49

Am good thanks everyone. Great to hear about PrettyVacant. It's lovely to hear she has had the baby after all she has been through.

Sorry about the hormone misery kittens. It must be really frustrating. I don't know whether Pred is interfering with your fertility. I think I have heard tell it can delay ovulation? It's so frustrating all round.

Waking up all the night georgie sounds very frustrating too! Roll on the holiday. It is hard to distract yourself I know. Talking of pregnant people how are you feeling too digi?

Not much to say here either really. Apart from hopefully recovering well from the ERPC it's just a waiting game. I feel ok, no real pain and less tired every day. I am really busy, got a lot of work in suddenly before going to a festival on Thursday. I can't really kick start my return to gym/healthy food sesh this week as too much work, not enough time to go the gym and of course the festival will inevitably involve some drinking... especially if it is going to be pissing it down. I am going to need some numbing! But next week will be back to being very healthy, hopefully.

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Havingkittens · 24/08/2011 11:35

I've just phoned up to make an appointment to discuss my blood results and whilst I was on the phone I asked the receptionist if she could check on my records whether the doctor had sent a referral for me to check about Ashermans' which I asked him about when I saw him over 3 weeks ago and she said there was nothing on my notes. FFS! I'm so annoyed by this. He was really friendly and pleasant about it and seemed to acknowledge (and somehow dismiss at the same time) my concerns. He told me that UCH may not see me because I'd already had so many tests from them but that he would refer me anyway. Now I think he just gave me a load of placatory bullshit! I have an appointment with my own GP who has been away to discuss my blood results but that's not 'til the 5th Sept so it will be over a month since the original promise of referral. Aaargh!

Actually, my regular GP is super helpful and has said in the past that if I want to get in to see him as an emergency appointment I should drop him in a note and he will try to get me in ASAP so maybe I will go and do that now and see what happens.

Does anyone here know anything about day 21 test results and what sort or ranges they should be in? I've done lots of Dr Googling and I think mine are ok but I'm a bit concerned about the Progesterone which seems to just scrape into what it should be at 10.4.

eurochick · 24/08/2011 12:13

Hi kittens. I was told that at 7dpo proesterone should be 30+ to confirm ovulation but I have seen others on here have been told 25 or 35. Mine was dead on 30.

When googling for this make sure you look at UK sites because the US and some other countries use a different measure.

Havingkittens · 24/08/2011 12:17

Hmmm, 10.4 doesn't sound very promising then does it? Brilliant!

Havingkittens · 24/08/2011 12:54

That might explain why I'm now crying over my bloody knickers Sad. I'd like to say better luck next month but my optimism is dwindling fast. I have to take 2 months off after that too.

Apologies for all my moaning. Feeling sad and frustrated.

eurochick · 24/08/2011 13:17

I'm sorry. I hope my answer didn't upset you. Did day 21=7dpo for you? If not, try to have it repeated at 7 dpo (or if you don't track ov, 7 days before your period is due).

I got my period today too so I am also feeling pretty miserable. Meh.

digitalgirl · 24/08/2011 15:48

kittens this is a link to what your hormone levels should be doing. I'm sorry you're feeling low at the moment, it's such bloody hard work all of this. Potentially you are ovulating but your progesterone levels might need a boost to help thicken your lining. Maybe Mr S could recommend starting cyclogest post-ov but pre-bfp?

eurochick sorry af got you too Sad

free am keeping busy. On a shoot today and recces tomorrow, so not much time to worry about the fact that I really don't feel at all tired. Scan is two weeks today. Hope skies stay clear for your festival weekend (and ds's bday party on Monday).

freelancegirl · 24/08/2011 19:09

Hi Kittens sorry you had been having a bit of a crap time with sorting out appointments. It is indeed very frustrating. I had that when my 2 referrals went missing on the 5th April (Mr S and St Mary's) and hadn't appeared a month later. I chased the Mr S one and got it faxed but then chose to see him privately anyway and St Mary's never arrived. I am getting a new one sent as we speak. But yes it frustrating to have things put back even more, especially when we all feel that so many other things waste time at the moment.

I don;t know anything about the hormone levels but that link Digi supplied and the info from Euro looks informative.

Euro sorry about the period too. Highly annoying.

Digi glad you are keeping busy. Me too! A bit manic at the moment filming and writing before going to a festival tomorrow until Monday. My own fault as I am taking time off and will be without laptop for the first time, well ever! Pointless taking it really but I think I will feel rather lost.

I noticed with my filming today that I definitely have a fat face, disproportionate to my over all weight gain which isn't really that bad. It's the bloody moon face!! Can't wait to be off these steroids and hope it goes back to normal soon!! I should be completely weaned off by Monday although I am going down a day earlier than they said with each dosage. I hope that's not going to cause problems. I am feeling tired on and off and also quite hot from time to time but not too hideous. Not sure what is post-mc and what is coming off the steroids and what might be just being very busy. A bit of all of it I guess.

If I don't speak to you all hope you have a fab weekend and that DS' birthday goes well Digi too. See you on the other side of things for yet more drug talk...

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Havingkittens · 24/08/2011 19:17

No, don't worry eurochick, it wasn't your answer that upset me. Just the fact that I feel like I have less and less control over my reproductive destiny. What with doctors not doing as they promise, and then the fact that I am struggling to get pregnant which I never used to. I actually had the test on day 23 because I couldn't get to the hospital on day 21, so I think it was about 7-8dpo but couldn't tell for sure as I don't know exactly when I ovulated after my surge.

Even though it has been really frustrating having people saying to you "oh, well at least you can get pregnant really quickly" when that hasn't exactly done me any favours so far, it was sort of good in a way as it meant I could at least have more chance of upping my stakes. Unfortunately miscarriages are only half of what I have to worry about with my history, so the fact that it's already been nearly a year since my last BFP is not ideal.

Thanks for that link digi, I had a look at that earlier actually. That was the information that made me think my results were normal but that my Progesterone might be just scraping in at an acceptable but not ideal level.

Weird day really. Felt really fed up so OH took me out for a walk and then we ended up going to the pictures to try and cheer ourselves up (benefits of being self employed). I had really bad period cramps combined with prednisolone induced indigestion which has been plaguing me all week. I was suddenly overwhelmed by a massive wave of nausea, you know when your mouth starts watering like mad, and ended up having to run out of the cinema to throw up. Lovely! So now I'm in bed with my laptop and a belly ache feeling sorry for myself. Boooo!

batteryhen · 24/08/2011 20:59

Poor you kittens xx as if AF showing up is not bad enough - let alone giving you an upset tummy too.I looked at your levels too - if you were a bit later than 7-8 dpo then your levels may fall.Also check that your levels are in the same measurement as the one on the charts - some labs measure in mmols, some in mls etc etc. And yes it is so bloody annoying when referrals go missing. You can ask your gp to fax your next one too so it definitley goes off xx I am also with you on the mentalling on the ashermans - I have not had AF since my erpc......

free glad to see you are busy, but not so glad about the moon face! I am wondering if the moon face thing will get me too :( But I could get a face like the surface of the earth as long as I get a baby at the end of it xx

digi glad things are progressing well for you. Keeping busy is definitely the key ! xx

freelancegirl · 24/08/2011 21:45

It's understandable to be upset and have lows kittens. Not sure what the nausea is but the Pred can't help. It's all such a bloody struggle. Glad you went out for a walk and to the pictures and I hope it cheered you up. When on 40mg of Pred Mr S also prescribes Omeprazole which is meant to help with the resulting stomach problems. If these are bothering you it might be worth exploring that? It's something you can get via your GP and obviously doesn't interfere with the treatment if it was prescribed to me by the man himself.

Hi Battery, what date was your ERPC? How frustrating still. Just trying to work out how many weeks it had been. Asherman's is my next worry lined up too I think. That and the moon face of course. I weighed myself today and I have lost a couple of pounds this week (I had reached a rather scary 10 stone 6 a few days ago and am now 10.4) but I think it was staring at my face all day in an edit that made me realise it is definitely bloated. I have hamster cheeks Blush I bloody hope they go soon! In Jan before Miscarriage 2011 Number 1 I was 9.3lbs.

Remember though I have been on 40mg of Pred when pregnant, starting the 25mg dose on the 28th June and increasing the dosage two weeks later so was on it for 2 months almost in total. So hopefully you ladies on 25mg won't get it! I agree, I didn't really mind putting on the weight when I was still pregnant as soon I would have been able to explain to people why. It's just now I have miscarried I have no visible excuse. I was just so bloody hungry too! And always craving sweet things. Less hungry now though, but still not able to always stick to what could be safely called diet food. Pred should be finished on Monday and then I really do have to get my arse into gear. Until then I guess I am still in recovery.

Oh, as I write, DH (the cook in our house) just brought me a bowl of hot berries and custard Confused so of course I am going to have to eat it. Will try not to beat myself up about it too much until Monday and Off The Pred Day.

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giraffesCantChaChaCha · 24/08/2011 22:06

Hi sorry am gatecrashing. Title caught my eye, am on pred. Are you on pred to HELP ttc, or are you on pred and worried about the affect it will have on ttc/preg? Read a few posts and am still unsure! Blush

Wish you all luck ttc

freelancegirl · 24/08/2011 22:37

Hi Giraffes. No need to apologies, the thread is for anyone. Why are you on Pred?

The people on this thread are on Pred and some other treatments because we have had recurrent miscarriages and have been diagnosed with High Natural Killer Cells. We are being treated or waiting to be treated with Pred to help calm the immune system to reduce the chances of the body attacking the foetus as a foreign object. None of us were on Pred (ie for other reasons the medication is prescribed) before starting to try and most of us are taking it from ovulation (so when TTC), and onwards if or when we get/got pregnant.

It doesn't help with TTC but is said to help prevent recurrent miscarriage for those who have an over active immune system. I am aware people take it for other conditions such as arthritis, Crohn's and colitis but that's not any of us yet.

Hope that helps!

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giraffesCantChaChaCha · 24/08/2011 22:45

Ah I see, thats interesting. Sorry to hear of everyones mcs, have lost 3 myself. Am on pred for bad asthma, been on it more and more recently and had to be weaned off it as too dangerous to stop out right. Never heard of it being used like that before. Fingers crossed the pred works for you all - its a good drug but has some crappy side effects eh~?!