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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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Arianrhod · 05/09/2011 11:12

Hi ladies ... Sorry for the silence but moved house and then went away for a week, fabulous timing (NOT!). Not got anything to report as not seeing Mr S for my first appt until next Monday but already getting nervous. First AF post-ERPC hit me exactly day 31 which is something I guess, at least I'm not waiting months like some poor souls. I've worked out if my body follows the pattern of previous post-MCs I'll probably OV next Sunday, so it will then be another month before we can start to TTC, which is actually ok with me, at least I'll have my results back from Mr S before then and hopefully have something to work on.

Glad to read everyone's news ... I'm alternately looking forward to the 'take on the world' side effect of the 'roids (assuming Mr S decides that's the way forward) since I seem to be tired all the time right now, and dreading the weight gain/'moonface' aspect of them. As someone else said (and I forget who, sorry!), the things we do to ourselves ... !

Hope this morning finds everyone well and fighting fit :)

Stogan · 05/09/2011 11:19

Oh good luck Arian

I think the taking on the world thing for me was because I expected to feel so tired during my first 12 weeks and I think the roids got me thru it, it's when I started to come off them that the tiredness hit me. Even so I would recommend dr s and his programme to anyone and everyone as seeing that heartbeating on the scan and those little legs and arms going nuts has been a million percent worth every side effect ( even the moon face and acne although I'm getting fed up of it now lol)

Best if luck to u hunni xGrin

digitalgirl · 05/09/2011 11:45

battery I think this cycle I remember my temps not being as high as they were normally. They were definitely above the cover line, but again, only really hovering above rather than climbing steadily. Maybe a link to your chart so we can have a good stalk? And Angry Shock about your 'friend'!

stogan welcome! and congratulations for getting this far. I am 8 weeks pg on the treatment, and going to have my first scan this Weds to see if anything's there. I too expected to feel more tired and haven't at all so it's very reassuring to hear that you've been the same. In fact, it's very reassuring to hear that after 9 weeks that Mr S thinks we're through the worst of it. May just book a scan with him for next week if all goes well on Weds. You say you were on 40mg of pred and had intralipids - how high were your NK Cell levels?

ari sounds like your body is getting back to normal fairly quickly, which bodes well. TBH I don't think I've put on more weight than I would normally in early pregnancy, so the moonface thing may not happen for you.

Stogan · 05/09/2011 11:59

High digital , my levels were 1.9 so classed as very high but certainly not anywhere near the highest I've seen. I had a scan at 6 weeks and saw a heartbeat which we had never seen before but that was just at my local hospital at request of dr s they scanned me again at 8 weeks then dr s at 9 and then hops at 11 although baby had grown more and was actually measuring 12 weeks so this wed I am going for an official dating scan and then I might believe this is all real !!!

Congrats to u on Getting this far hunni, I found once I reduced to about 30mg of pred was when started feeling soooooo tired so just to warn u ! The headaches have only been bad in the mornings and then fade but morning sickness has appeared which I never had while on the roids. All in all I can say it's been an experience but 110% worth it as I'm sure u will agree !

All the best Hun, I look forward to hearing all the lovely details of ur scan xxxxxSmile

Iggi999 · 05/09/2011 12:31

Hi, well my steroid-high certainly contined yesterday as I was up till 2am working on a project! Knackered in the morning of course. Got positive opk on Saturday, but still not a significant temp rise so think I need to keep going. No ewcm, do steroids affect that I wonder? Am fed up with all this, and glad to hear from someone for whom it is working out!

freelancegirl · 05/09/2011 12:37

Stogan what was your history with mcs? It sounds like you have been through a lot. Amazing to see the heartbeat for the first time and for it all to be going well.

I have rarely seen anyone with as high levels as me (3.79) and I wonder if that is why I have miscarried when on the treatment. More or less every story I hear is people miscarry repeatedly and are then treated and have a successful pregnancy. Makes me worry that my levels are prohibitively high. I have now encountered a couple of people who have also miscarried on the treatment on the immunology board on Baby Centre but it seems so much more common to have a successful pregnancy on treatment. Which is great in a sense.

Hi Ari good luck with the appointment. Glad too that you have a period after the ERPC rather than weird things going on. I am hoping mine comes too (my ERPC was two and a half weeks ago). I am definitely having some weird symptoms of something at the moment - ovary twinges earlier in the week but I actually have sore nipples and glossy hair now as if I were pregnant still (when actually I didn't' have these symptoms when pregnant). I have lost a whole pound this week Grin pathetic I know but at least it is moving in the right direction now I am off the Pred.

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Havingkittens · 05/09/2011 13:18

freelance do you have all the relevant vaccinations for traveling to Carribean or Asia? I was supposed to go to Costa Rica around the time of my second pregnancy but decided not to because of not having vacs and also the malaria tablets - although I actually didn't bother with taking the tablets last time I went or the time before as I wasn't really in high risk areas. I've not been to any of the Caribbean islands or to that side of Mexico (only been to Baja California side) but I have been to the Caribbean side of Costa Rica which was beautiful. I know what you mean about not putting things on hold in case of pregnancy. You could pay the extra for insurance on the flights/hotel etc so that you can cancel if you are pregnant perhaps? Well done on the weight loss by the way. A pound off is still in the right direction, as you say. I am looking very flabby at the moment, it's just depressing!

stogan welcome to the thread. Lovely to read that your pregnancy is progressing well. Most heartening! Sorry to hear you're having a hard time with the steroid withdrawal. They are pretty nasty. I hope it settles down soon.

digi my OH is bloody useless with the appointments too. It's astonishing! He does have a really bad memory though and it's not just this stuff he forgets. I have taken to putting his, solitary, single bloody tablet that he needs to take but forgets, in my bag with all my pick-n-mix selection of pills so that when I take them last thing at night I can give him his one at the same time so he won't forget. That seems to be working so when I'm back on the Pred I will just take that in the morning and save the rest for bedtime so I can continue with this regime. I am on day 12 today so putting in another concerted effort this week as this is my last chance for a few months now. Bloody hope it works.

I've just been to the doctor, he told me that my Day 21 test results look fine and my fertility is far from dwindling. Also that according to my results it looks like I did ovulate, soooo, I just have to trust him on that as he is my GP, not Google! He also didn't think there was cause to worry about Asherman's based on my results and what I have told him about my cycle so I shall have to stop stressing and just try and get pregnant. He has given me a prescription for the Omeprazole (or whatever it's called!) so I hope that sorts my angry guts out. Although the pharmacist told me it can cause diarrohoea or constipation which seems kind of futile as it's just one stomach problem for another!

Thanks for all your thoughts regarding my mum. Still some tests to do in the next few days so it's just a waiting game. Story of my life really - waiting for news with a lump in my throat! My heart is in my mouth, I'm hoping it goes back to it's rightful place soon and not into my shoes!

Best of luck for your scan this week digi, I will be thinking of you and checking in to see how it went.

Good luck to everyone else who has appointments or is SWI this week. x

Stogan · 05/09/2011 13:22

Hi freelance I had 4 mmcs between nov 08 and feb 11 but we had 18 months off ttc for tests and to get married. Each time baby has never actually got passed 6 weeks but the first time we thought it was a normal pregnancy and went for a 12 week scan on Xmas eve to find an empty sac, we were crushed and needless to say was the worst Xmas ever.
So to see a baby and a heartbeat at 6 weeks and then to see 3 more scans with the baby growing as it should is just too good to be true but I guess I need to start seeing that this could actually happen, it's hard tho as I know ur more than aware xSmile

Stogan · 05/09/2011 13:23

Thanks kittens, glad to see things seem to be looking good for you too hunni xxSmile

digitalgirl · 05/09/2011 13:52

kittens Great news the day 21 test was fine. Guess it really is just a matter of hitting the jackpot then. And I'm sure it will be worth the wait Smile.
Hope your mum's tests are ok.

stogan must have been amazing to see the heartbeat for the first time. I've had two mc's where I've seen the heartbeat. One was very very slow and never picked up. The other was fine, but then stopped very suddenly - we later found out that this was chromosomally abnormal. So I'm hoping that if we see a strong heartbeat that all will be well as I've had the 'bad luck' pg now. (well, haven't we all?). Can I ask are you still taking cyclogest?

Stogan · 05/09/2011 14:01

I am digital yes , still taking it until 16 weeks. R u on it too?

Our heartbeat was 162bpm which dr s said was excellent so I'm happy if he said that, the man is a genius in my eyes even if things were to go wrong now ( everything crossed it won't) I have so much faith in dr s just for getting u's this far ! X

digitalgirl · 05/09/2011 14:05

I've got enough to last me till 12 weeks, so would have to get another 4 weeks if we get that far. I'm finding it very comforting being on progesterone, like I've got a safety net.

Stogan · 05/09/2011 14:20

Yeah I had to get more of all the drugs when I went to see dr s last time, he worked it out exactly to the day for me too , shame coz if I had any extra I could have sent them to u, I might have some spare prednisolone tho once I finish next Monday. If u need anymore? X

Arianrhod · 05/09/2011 14:36

Can I just ask you ladies, are the steroids that Mr S prescribes you expensive as a private prescription? If so, have any of you been successful in getting your GP to prescribe them for you, having seen Mr S's prescription? I'm just wondering in advance.

freelancegirl · 05/09/2011 14:45

Yes I have a nice GP (my first nice one ever, so much so that I ask to see her every time I go for an appointment as I have the kind of practice you can see whoever is available) and she has given me the NHS prescription. Particularly handy for me as I have an exemption certificate due to my thyroid medication so it is all totally free. But you hopefully can get your GP to prescribe you them Ari.

It's so nice to hear all of these good news stories. I know digi you must be bricking it about Weds but really hope it goes well this time.

Can I just pick your brains regarding some very TMI info about my cervix...? I have just been for a smear (need annual ones due to dodgy cells before and am pleased I can now have one as I am not pregnant) and the nurse took a long time to find my cervix. Firstly she said I am indeed ovulating as there is a lot of EWCM and then she eventually found it and it is very deep and low to the back. No-one has ever said this before! I am about to turn to Dr Google but wondering if anyone can shine any light on this. I was once told I have a profound vagina by a doc!

It is looking normal though after the ERPC which was good. And she was such a lovely and informative nurse - almost made me have a lump in my throat to be treated so nicely by someone in relation to all that has happened. She says she bets next time she sees me I will be sporting a huge bump and that she tends to be good luck for people with such difficulties. Sweet of her.

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digitalgirl · 05/09/2011 14:48

Yes ari I've been to my GP who is incredibly sympathetic and has basically prescribed me everything that Mr S has. I've just shown him the letters I've got from Mr S plus the prescriptions I currently have. And now I'm pg I get all prescriptions free. I wish I'd known earlier how obliging he was going to be as I already paid for private prescriptions for 4 cycles of pred and 8 weeks worth of cyclogest and it cost over £100.

So thanks stogan but will hopefully be popping back to my GP for some more pred when I need to start weaning off.

digitalgirl · 05/09/2011 14:50

x-posted free - when you're most fertile, your cervix changes shape and rises up very high so it can be harder to find. So even though it seems deep at the moment, chances are if you had a smear this time next week she wouldn't have mentioned it.

freelancegirl · 05/09/2011 15:04

Ahh, thanks Digi. Our resident cervix expert. I have still never found mine. She said it was deep and far back and covered in EWCM so that must be the case. BTW I bought that Taking Charge of Your Fertility book and was reading it on the train, rather embarrassed of the drawings of naked women crouching to find their cervix with a finger when I realised someone was looking over my shoulder :)

Good to know am definitely ovulating though. The ovary pain has gone on about a week on and off. No wonder I might have stuffed it up last time in terms of getting dates wrong. Be interesting to see what happens next month when I chart and SWI again. I will have to SWI for a good ten days in a row to be sure of catching it!

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Stogan · 05/09/2011 15:18

No probs digi all the best Hun x??

Iggi999 · 05/09/2011 18:44

Love the cervix stories Smile
Bit cross though that my GP refused to give me the S prescriptions on the NHS - she has been very good and really phrased it as she COULDN'T not WOULDN'T. Hmm.
Kittens Mr S prescribed me the same medicine for heartburn etc that you've just got. Ironically haven't needed it this time. I had to laugh at your DH and the vit pill description - I often wave my large collection under DH's nose to make a point!

freelancegirl · 05/09/2011 20:18

Yes that's a bit rubbish of your GP saying she couldn't. Is it something to do with being Scotland (you are Scotland aren't you...?)?

My DH is good with his pathetic one little tablet compared to my top count of 18 conception vits but the one thing he isn't so good with is drinking. We don't tend to drink on weekdays unless we go out, thankfully I have never got in the habit of cracking open a bottle of wine over dinner as I don't think I would easily get out of it, but on weekends we are very much pub and restaurant people and do definitely drink too much. I have started to 'limit' myself to three small glasses of wine a day (a day of drinking that is - not every day!) which is probably still too much but he is really not very good at limiting himself. Face it, we are going to have to start TTC again soon and I want him to be in good working order!

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batteryhen · 05/09/2011 20:50

freelance I agree with thre cervix thing. I am a smear taker, and sometimes the cervix is in an odd position, - at different times of the month, and also according to what position you are in. Nothing to worry about at allxx
ari my gp also precribes whatever Mr S says. he is lovely and just says 'give me the script and I will prescribe'
iggi did she give a reason why she couldn't prescribe? Considering pred costs very little, it seems a shame
digi I am very excited about your scan - I have good vibes coming your way,and am feeling very positive for you. I would postt my chart, but have been temping but not charting - ie too lazy to write it down. The main reason being that as I didn't bleed at my last af time,I didn't know when to start on fertility friend. However I looked at some past charts and saw that I have been a slow riser before. Also had progesterone done today so I will know tomorrow if i have OV.

Just got back from my appointment with my reflexologist. She says that my womb feels healthy,no scarring etc. She aslo said both feet in the fallopian area were hot which is unusual as only one is normally hot after OV - according to the side which ovulated. Immediately I thought - oooooh 2 eggs! How nice would that be! Anyhow, she was very reasssuring and lovely.

big wave to everyone ...my steroid high is kicking in - I feel a bit manic today. And HUNGRY!!!!!

freelancegirl · 05/09/2011 21:01

Oh my goodness battery you're a smear taker? Why didn't I just come to you Grin. Hey you learn something new every day. Are you a nurse? She was lovely this smear taker. I told her about the ERPC as it was only a couple of weeks ago and I didn't know if that might be relevant. But good to hear it all looks good and is normal. Of course there's that dreaded wait for results now though.

I can completely relate to that hunger feeling on the Pred. That combined with getting up earlier and then early pregnancy (I don't know why I feel the need to say 'early' pregnancy being that I have never had anything that was late pregnancy!). Thankfully I am starting to feel less hungry now. Battery go for a jog around the living room and, feck it, have a biscuit or three. Glad your feet indicate your womb is in order!

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Iggi999 · 06/09/2011 06:39

Have woken up cross as my temp still hasn't shown a significant rise (it used to go up to 98 day 2 after ovulation and stay there). Wish I knew what was normal on steroids! Not looking forward to telling DH more action is required from him. (Too old for this game!) Hope everyone else has decent days Smile

batteryhen · 06/09/2011 06:43

iggi - My temps have been barely above the cover line too, but today at 5dpo - they have shot up. Maybe the pred makes the rise slower?
free I went to the gym yesterday and will go again today. I feel like I am fighting a losing battle!

Have a good day everyone x

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