Page 32 | TTC/ pregnancy on Prednisolone or similar part 2

Arianrhod · 2011-10-18T08:55:48+00:00

Starting up part 2 of this thread since the old one closed at 1000 posts! *iggi* lots of luck for today, hope it's nothing - I know it doesn't help but I know lots of women have spotting and/or bleeding in pregnancy and it still goes ok. Definitely call the EPU, get scanned - it's worth it, honestly, at least you will know one way or another. Virtual hugs coming your way. *free* I also started AF properly this morning, so looks like we may be both importuning a friendly witch for a good fertility spell on Hallowe'en? I know exactly what you mean about the scary stuff ... a small part of me was actually sort of relieved when I didn't get a BFP purely because it means I don't have to go through the whole worrying about miscarrying all over again. Bizarre, but there it is.

scooterchaser · 27/10/2011 16:55

Charlie sorry you're having a wobble, Its really hard to get different recommendations from everywhere. I was also told to wait by lots of people telling me how much time I had ,but in the end my appointments came through earlier than I expected and once I had the big bag of drugs I took that as the green light to go for it. I guess listen to your body and trust your instincts. It's such a tough decision, does your acupuncturist have a lot of experience with this kind of thing?

scooterchaser · 27/10/2011 16:46

free hope all is good for your friend and maybe the dates are just a little out or something. I don't know anything about outcomes from 6 week scans cos I never had one that early before but I am sure there are some encouraging stories out there. Wishing you positive mental attitude for the TTC altho know it's mixed emotions at every stage isn't it! I'm already a wreck!

I have spent the entire day sorting out my treatment and it's all a bit mindblowing. Apparently my NK 69 count has raised while on the pred (from 2.0 to 2.69) but the doctor I spoke to showed me that my total count and percentage NK figures have reduced. I don't really know what this means for my chances but I downed the 40mg pred almost before I left the pharmacy! I really hope this dose is better at zapping the blighters and isn't too late.

Then the intralipids thing. I have to have it done at home (to the tune of £300 a time - ouch!) wait in all day tomorrow for the stuff to be delivered and then I will find out on Fri eve which three hours of Monday I have to spend having it 'infused' or whatever. I am lucky I am not trying to hold down a normal job at the mo, don't see how it's possible!

euro don't have any experience of Harley Street but I have been really pleased with Epsom where everybody seemed to know the protocol for Mr S patients and I even got an impromptu consultation today with a doctor because my results have changed and she felt she needed to talk me through all the new paperwork and treatment. Also, at my previous appointment there I got to go in early!!

Last thing, people on the 40mg, have you been given some drug beginning with O for indigestion/acid reflux side effects and do we really have to take it if we don't find we're suffering? Feeling like 11 pills a day is a bit excessive if I don't actually need it all.

Cheerfulcharlie · 27/10/2011 16:42

Well done on the list girls! Particularly impressed at Digi putting them in order of ovulation :-) I bet your DVDs and books are all suitably grouped ;-)

Freelance, I'm sorry to hear about your friend. I have to say I agree it doesn't sound good because with the IVF I suppose she will know the exact dates. I always thought that when people don't see anything at '6 weeks' then it turns out ok, it's because they got the ovulation date a bit wrong and were out by some days or so. I may be wrong, I hope so and that she's not going to have bad news in a week.

Sod's law, just as I announce that I'm going to TTC this month i am having a wobble. I have been having acupuncture since late June and acupuncturist said give it 3 months before ttc to give the acupuncture chance to work, so I gave it 4 months (because 1 month she was away). She knows I'm planning to ttc this month but I made the mistake of asking if she thought it was ok for me to try again and she said although some things have improved I still have 'coldness in my uterus' and although it's impossible to say she would wait for another 2 months. One of the signs of it is cold hands and feet yet I have always had this and really doubt another few months of acupuncture is going to cure this. However, it has managed to shorten my cycles from 39 to about 32 days and eliminate all pms symptoms, so I am quite convinced it has done some good.

I've been gearing up for ttc this Nov for the last 10 months from losing weight, all the testing etc, to taking all the vitamins, metformin to get my PCOS in check, changing my diet, getting my cycles a normal regular length and my hormone levels normal and emotionally feeling fine again. I have been very excited about ttc again finally and counting down the days til OV and now to put it back til Jan is really frustrating, but then I don't want to be silly and rush into another miscarriage for the sake of 2 months.

My gynae is happy for me to try now and my acupuncturist would not have given her opinion had I not asked for it. So, what do I do, do I try and then when I miscarry kick myself for not listening to the acupuncturist? I'm 33, by the way, so I hope i do still have a bit of time. I know there's a highish chance i'll have a miscarriage anyway so I tend to just think, let's get on with it and another one out the way. What would you do - just go for it or wait til Jan? My OH will be swayed either way.

Sorry - self indulgent post and not so NK cell related specifically, but i'm really not sure what to do now.

Original poster

Arianrhod · 27/10/2011 16:20

free would love to see what Customs make of your own arsenal of stuff ... try explaining that lot! :)

Sorry to hear about your friend, I'm sure we all sympathise hugely with her. I've heard it told that an empty sac at 6 weeks could still result in a baby, but IRL I've never known it to be the case :( Is it worth your friend getting tested for immune issues, do you think? And no no no, positive thinking, no nervousness please, take one day at a time and see what happens. No second guessing before we're even there. I refuse to even think about the possibility of "what happens next" when I get my next BFP. Not. Going. To. Think. About. It.

Denial, a lovely place to be (at times) [hgrin]

euro is that Mr S you're seeing? Personally I've never found the Harley St appts rushed, he's seemingly had all the time in the world when I've seen him. YMMV, of course, and you must go where you feel most comfortable :)

OP posts:

eurochick · 27/10/2011 16:07

Thanks ladies. My appointment is on 21 Nov at Harley St but I am considering seeing if I can change to Epsom. Someone mentioned to me that the Epsom clinic is usually less rushed.

The lists are really useful to see who is on here and what stage we are all at.

freelancegirl · 27/10/2011 15:57

Having a little chuckle at Battery armed with an arsenal of drugs and random bottles of cough medicine and grapefruit :) oh the things we have to go through... I will be going to the US for ten days in the 2ww so I will have to take extra Pred, Cyclogest, Hydroxy, extra thyroxine, all the preg vits and aspirin, pregnancy tests, thermometer and of course AF paraphernalia just so I have all bases covered!

Yes battery that is your chronological place on the list so that is where you should be!

Digi very pleased you are soon going to be laying off the arse tablets . They are, literally, a real PITA. Actually I have always gone for the 'front option'.

Am having a bit of a worry about a friend today. She has got pregnant on her 4th round of IVF (one previous chemical) and went for a 6 week scan today and just saw an empty sac. Obviously this is exactly (bar the IVF) what I went through last time and it didn't work out well for me. She has that horrible week wait for another scan. I just really hope it goes well for her. Even though I've had 4 mcs and two back to back this year I feel she really deserves this to go well as she has been trying to have a baby for years and years. I so want this to work out for her.

I just know from past experience that the outcome is potentially not good. Of course people DO have an empty sac at 6 weeks and go on to have a healthy baby but from what I have Dr Googled after my last one it seems much more usual to actually see something at 6 weeks. Does everyone agree. I just KNOW that this might happen to me again too. For some reason I expect it. Oh god, getting a bit nervous about jumping back on the TTC bandwagon next week.

batteryhen · 27/10/2011 11:35

Hello lovely ladies! Here I am, I am now back on line -hooray! I won't do a massive post, but just wanted to say hello to everyone and that I am still here and 'getting on with the job in hand' if you get my meaning.

I am visiting DP presently - I thought i would OV today but actually only got a high again on my cbfm so think it might be saturday as I tend to get 2 peaks and ovulate on the second. So I am here with all my usual tablets of aspirin, pregnacare plus, and Vit D3. I have also been swigging grapefruit juice, and disgusting cough mixture. I am working so hard at getting a bfp - i am exhausted!

I would like to be added to the list that digi has organised so well!

I hope I don't mess it up. I have put myself on the top as i am due to ov on Saturday (feel like I am pushing in ) Hope this is ok xxxTTC

batteryhen- High activation NKC, and factor v leiden. TTC/OV 29 Oct
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Stogan - V high NKC - BFP ON 9/7/11 cycle#2 - 20+5 Due 10/03/12
Digitalgirl - High NKC - BFP cycle#2 - 15+3 Due 16/04/12 next scan 7/11
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - 12+2 next scan 15/11
Iggi - High NKC & Hypothyroidism - 9+2 next scan 7/11
Comedy 8+6 due 1/6/12 scan 2/11
Scooterchaser - V High NKC - BFP cycle1 - 4+4. Due 01/07/12. Scan in two weeks

am worried now that I have messed it up? xx I think it is ok

digitalgirl · 27/10/2011 10:48

Interesting how many 'V high' there are here.

iggi Just echoing others on the steroids masking symptoms. I had no symptoms at all other than boob soreness. I think I've had about 2-3 random days of nausea in total. It's totally normal. And I actually think any weird symptoms I'm experiencing now are more withdrawal from the pred rather than actual pg symptoms.
And well done for getting through your booking in!

Going for flu jab next week. They do a walk-in thing at my local GP surgery which I imagine means sitting next to a bunch of people who have left it to late and catching actual flu at the same time as getting the jab .

Can I just say I'm REALLY looking forward to coming off the cyclogest this weekend. It's been a fantastic comfort blanket and I was so pleased to be on it through the first trimester but to not have to remember to insert stuff into my bottom on a nightly basis would be good.

digitalgirl · 27/10/2011 10:30

Updating for today - have left Iggi and Stogan as is, but added a day to all the other pg ladies.

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Stogan - V high NKC - BFP ON 9/7/11 cycle#2 - 20+5 Due 10/03/12
Digitalgirl - High NKC - BFP cycle#2 - 15+3 Due 16/04/12 next scan 7/11
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - 12+2 next scan 15/11
Iggi - High NKC & Hypothyroidism - 9+2 next scan 7/11
Comedy 8+6 due 1/6/12 scan 2/11
Scooterchaser - V High NKC - BFP cycle1 - 4+4. Due 01/07/12. Scan in two weeks.

Original poster

Arianrhod · 27/10/2011 09:38

Morning ladies -

Adding in my thyroid bits to join in with coconut and free, loving the organisation and seeing where everyone is!

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Stogan BFP ON 9/7/11 on our second cycle I'm 20+5 and due 10/03/12, v high NKC and had pred cycle plus intralipids at home
Digitalgirl - High NKC - BFP cycle#2 - 15+2 Due 16/04/12 next scan 7/11
Coconutfeet 12+1 next scan 15/11 V high Activation of NKC, Factor II gene mutation and underactive thyroid
Iggi 9+2 next scan 7/11 High NKC & Hypothyroidism
Comedy 8+5 due 1/6/12 scan 2/11
Scooterchaser - V High NKC. BFP cycle1. 4+3. Due 01/07/12. Scan in two weeks.

euro definitely stick around, I was on here even before I had my first appt with Mr S; as scooter says, it's all about the hand-holding and morale boosting here!

scooter so pleased you had a better response and have the prescription coming through. I understood intralipids to be Mr S's practice with v high NKC too - at least, he's lined me up to have them when I get my next BFP - might be worth giving them another call and asking? I'm very sure they won't mind you calling again, and it's worth it for your peace of mind.

iggi I've heard for some women the steroids can almost completely mask all pg symptoms - but they may well come back with a vengeance when you're off the steroids, so try to enjoy the lack of them now!! (even if that seems a bit counterintuitive, since we all want our symptoms to keep us reassured our pregnancies are still going strong, I know).

I have to echo what so many people say too - every pregnancy IS different. With my DD I felt no nausea at all, no cravings, no weird symptoms, nothing (but then, that was my first pregnancy, and I didn't know I should be worried about lack of symptoms then!). With these last three pgs, even the early miscarriage, I've had nausea, seriously swollen bbs, major tiredness, and generally feeling yucky. I know there were 5ish years between my DD and my three pgs/MCs this year, but I would have thought one's body would react much the same - this just brought it home to me that every pregnancy really is different.

And iggi ... you ARE a real pregnant lady ... really ... I know you're probably in denial, but we're all rooting for you and your baby [hgrin]

OP posts:

iggi999 · 27/10/2011 09:09

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Arianrhod - V High NKC TTC/cd9/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Stogan BFP ON 9/7/11 on our second cycle I'm 20+5 and due 10/03/12, v high NKC and had pred cycle plus intralipids at home
Digitalgirl - High NKC - BFP cycle#2 - 15+2 Due 16/04/12 next scan 7/11
Coconutfeet 12+1 next scan 15/11 V high Activation of NKC, Factor II gene mutation and underactive thyroid
Iggi 9+2 next scan 7/11 High NKC & Hypothyroidism
Comedy 8+5 due 1/6/12 scan 2/11
Scooterchaser - V High NKC. BFP cycle1. 4+3. Due 01/07/12. Scan in two weeks.

Stogan · 27/10/2011 08:08

Xxxx

Stogan · 27/10/2011 08:08

Oh and I had v high NKC and had pred cycle plus intralipids at home

Stogan · 27/10/2011 07:14

Hi everyone

I'm missing from the list can I be added please, would do it myself but on phone and would have to type all out individually

We got BFP ON 9/7/11 on our second cycle I'm 20+5 and due 10/03/12

Thank you, hope everyone is ok xxx

scooterchaser · 27/10/2011 07:05

Hi iggi if it helps I have hardly any pg symptoms either and even at this stage had my nose in a box of ginger biscuits when pg with DS. I mainly have cramps like AF is about to show. I find it comforting to think that pred could be masking everything and making me feel so different, things still could be going in the right direction, we have a good chance.

How was the booking in appointment? I can sympathise cos I remember going and the midwife writing down all my appointments on a card, she got to 36 weeks and I just thought, yeah right! Often they don't know how to deal with us because they are used to things being textbook for most women. The local midwives seem wary of me because I had complications with my successful pregnancy too, feel like it's a case of 'oh dear here she comes!' Anyway, I just know how you feel to be the odd one out and looking at everyone else with their baby-dreams mapped out for them, really hope you had a sympathetic midwife who understood where you're at and didn't try to dismiss how you're feeling.

On a positive note I held my best friend's 5 day old baby yesterday, one of six little babies born into my friendship group in the last two months which has been hard for me to stand by and see (my next due date was November) Anyway, I'm proud to report I just really loved it. My friend has also had a horrendous journey and it's so encouraging to see her come out the other side. Good things can happen!

iggi999 · 26/10/2011 22:41

Had booking in appt today. Did feel something of a fraud next to the "real" pregnant people. Though for once I didn't want to kill any of them so I guess that's progress.

iggi999 · 26/10/2011 22:39

Hello, haven't been on laptop today just phone, can't copy list yet.
Having my daily a minor freakout as just thinking how sick I was at this point with ds, and how completely un-sick I am now. I actually felt more queasy about a week ago, don't feel it at all now. How much can the steroids mask?

freelancegirl · 26/10/2011 22:06

Too much Rose prior to TTC/pregnancy is almost obligatory snoopy :)

I am glad the general consensus is that there aren't that many calories in the intralipids comedy. What with the weight gain from the Pred, Omeprazole, pregnancy, eating to compensate for stress and no alcohol we don't need any more needless calories!

OOh 12 people on the list now! Who is missing...? Iggi, Stogan, Battery...?

snoopygirl · 26/10/2011 21:15

hey Comedy lipids here I come...."bring on the pies for me if I get a bfp"!! sorry too much rose tonight... gettin it down me while I can!

Digi thanks for putting the cycle No on, lovin all the early sucess.

x

Comedyworks · 26/10/2011 20:35

Really pleased they have sorted you out scooterchaser - the intralipids are basically a drip of lipids (fats) which take about three hrs to go in through a vein in your arm. Painless and no side effects in my experience of having had two now. The huge bonus is that I was told at the first one that it wasn't 5000 calories as I had thought it was but a mere 200 - so had a pie to celebrate!!

Thank you snoopy and arian for your comments

Welcome Euro!

scooterchaser · 26/10/2011 19:48

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Arianrhod - V High NKC TTC/cd9/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Digitalgirl - High NKC - BFP cycle#2 - 15+2 Due 16/04/12 next scan 7/11
Coconutfeet 12+1 next scan 15/11 V high Activation of NKC, Factor II gene mutation and underactive thyroid
Comedy 8+5 due 1/6/12 scan 2/11
Scooterchaser - V High NKC. BFP cycle1. 4+3. Due 01/07/12. Scan in two weeks.

Updating my stats as had it confirmed today that I have moved into the very high range and get my prescription for 40mg pred tomorrow. Really hope that the delay in taking the higher dose won't have affected my chances but I spoke to a midwife who couldn't really answer that question and my next Dr S appt is a way off. Can someone tell me what intralipids are please? Sorry for ignorance but I thought they were something also prescribed for v high NKC.

euro second what free says, please don't feel like an interloper, everyone has a slightly different story and its all about the hand-holding and the same goals!

Just want to say thanks everyone for holding my hand yesterday when I was going spare! And giving me so much info. I was very relieved and surprised that I did receive a callback today as promised, and the same lady was much nicer to me, restoring my faith in the system a little bit.

Comedy I have permanent major thirst and real bouts of the jitters which began a few days in the pred. I have read drinking lots is a good thing for early pregnancy though so just as well!

Digi I love the way you have organised the list, imagine your house is super-tidy :)

freelancegirl · 26/10/2011 18:41

Nah Euro, you're with us until proven otherwise :) and even then you can hang around if you wish of course. A friend of mine (mad on MN after mc and now a RL friend after meet ups) actually went to see Mr S recently and did not get diagnosed with immune probs! Do you have a date for your appointment yet?

eurochick · 26/10/2011 17:53

I always feel like a bit of an interloper on this thread s I have no diagnosis, just a suspicion that this might be the place for me, but I will add my name to the TTC list anyway. Feel free to boot me off until I get my results! I just wanted to check in with the thread.

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Arianrhod - V High NKC TTC/cd9/ov 1st Nov
eurochick - awaiting first appointment (in Nov)/cd9/ov 31 Oct-2 Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Digitalgirl - High NKC - BFP cycle#2 - 15+2 Due 16/04/12 next scan 7/11
Coconutfeet 12+1 next scan 15/11 V high Activation of NKC, Factor II gene mutation and underactive thyroid
Comedy 8+5 due 1/6/12 scan 2/11
Scooterchaser 4+3. Due 01/07/12. Scan in two weeks

freelancegirl · 26/10/2011 17:27

PS This is so bloody comforting having us all here and all with similar treatment!! Who else can we talk about NK cells, weird soya drips, steroids and sperm ingesting with :)

freelancegirl · 26/10/2011 17:25

Am loving the list, tres organised Digi! I am adding my thyroid bits to join in with coconut

TTC
Suemays - V High NKC TTC/ov 31st Oct.
Freelance - V High NKC TTC/ov 1st Nov. Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Arianrhod - V High NKC TTC/cd9/ov 1st Nov
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids
Havingkittens - High NKC TTC again from November

BFP
Digitalgirl - High NKC - BFP cycle#2 - 15+2 Due 16/04/12 next scan 7/11
Coconutfeet 12+1 next scan 15/11 V high Activation of NKC, Factor II gene mutation and underactive thyroid
Comedy 8+5 due 1/6/12 scan 2/11
Scooterchaser 4+3. Due 01/07/12. Scan in two weeks