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TTC or pregnancy on prednisolone or similar part 12

999 replies

teamdozie · 24/12/2013 17:42

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

OP posts:
MrsPixieMoo · 08/01/2014 16:05

Ladies, some good news. My 8 week scan today was good, correct measurements, nice heartbeat. They'd lost my notes and my usual midwife wasn't there. I spoke to three separate people to ask them to check my blood results as today is the last possible day I could have antiserum and nobody would do it. In the end I interrupted a midwifes' meeting and stood in the doorway until someone looked for me. Turns out I am immune but I really hate having to be so assertive and sharp elbowed to get any information. Rant over. I'm relieved on all counts today.

bakingtins · 08/01/2014 16:11

Good news on both counts mrsP Grin but ridiculous you had to go to such lengths to be told you were immune. What is the point of doing the bloody test if they do nothing with the results? Anyway, huge sigh of relief!

Tumtimes1 · 08/01/2014 16:12

Mrspixie that is really good news! So pleased for you and well done for telling them what's what!

VillageMum · 08/01/2014 16:46

Luna you are in my thoughts xxx

MrsP, so glad you can draw a line under the CP scare! Well done for getting the results out of those midwives! And what wonderful news about your scan, just delighted for you!

willitbe congratulations on your pregnancy! Your story of 'going it alone' is fascinating, wish I had the courage.

Smee and Ari thanks for the warning about tapering pred. This is my second cycle on pred now (last month had SO followed by 10 days of pred and a BFN; this month I'm again having SO, have just ovulated and started pred this morning) and it's either the pred or the synthetic HCG in the ovitrelle, but something is making me super drowsy each time. It's exactly like being pregnant. Not unpleasant, just can't keep my eyes open! No other side effects so far.

Baking hope you are still staying sane and cheerful in advance or the 20-week scan.

Brown so sorry to hear that your pregnancy definitely ended over Christmas, hope you are doing ok?

Team thanks for your encouraging words about my massive egg. It would have had another day to grow before being ovulated - yikes. By then it would have been an omelette, not an egg! If a poor wee sperm manages to penetrate its panzer exterior, I'll be amazed!

Hope everyone is bearing up.

Remembermyname · 08/01/2014 17:37

Hi all

Do you mind if I join you? I've been lurking for a while, then met baking on a thread who encouraged me to come out of the shadows.,

I've been ttc for 7 yrs, had 2 natural pgs which ended in m/cs at 8 weeks. Saw Mr S who diagnosed high NK cells and v high cykotines so had humira and ivig. Many rounds of ivf and another m/c later, had DE ivf in Spain, was on pred, intralipids, clexane and aspirin under Mr S in the UK and Mr S delivered dd 8months ago. Had a shock natural BFP in dec, but inevitably ended in m/c. Am planning on having another de ivf in March as, to be blunt, am not getting any younger.

Just catching up on all your stories. Many congratulations to all the bfps and I'm so, so sorry to hear of the losses.

Hope everyone is ok

teamdozie · 08/01/2014 18:43

Hello everyone!
Luna hope you are ok!

Smee sorry to hear of your bad experience with the pred and with Dr S too. He can be very matter of fact and can see how he can be disliked! He defo hasn't got any bedside manners! Don't give up just her though!

Willitbe my scan is on the 23rd. When is yours?? I'm trying not to think about it! I'm holding on to Bakings mantra!

Jass that's really interesting the sex linked to immune issues!

MrsP that's brilliant news on both counts! But bad that you had to stand there to get an answer!

Village as long as a healthy baby comes of it do t worry about the swimmers lol! How do you feel about this month?

Remember welcome to the thread and congratulations (although 8 months late) on the birth of your little one. Did you have IVIG with Dr S on this successful pregnancy?

Waves to everyone else
Cx

OP posts:
teamdozie · 08/01/2014 18:44

Tum how are you?

OP posts:
Smee3 · 08/01/2014 19:50

Hi everyone. Brownstag & willitbe thanks for sharing your experiences. Brown- that's scary that you're nan has had a bad reaction on 5mg like you say that seems nothing to us! Guess length of time is a. Huge factor.

MrsP great news on your scan & we'll done for getting assertive! That's what preg moodswings hormones are for, good to see they came in handy for once!

Arianhrod that's awful that you have adrenal fatigue, I'm definitely getting tested. Can't remember who asked about when my symptoms started but it was the day after I stopped taking (i was on 25mg and did 1 day 20, 3 days 15, 1 day 10 then nothing for a day. Now back at 10, will stay there for 2 more days then 5 for a couple of days.

Village- forme the pred gave me lots of energy, could maybe be stress that's making you tired?

Remembermyname- welcome to the thread and congrats on you DD, sorry to hear about your MC in December, I can imagine after one successful preg it's a shock and disheartening to go through an MC again.

Team- you hit the nail on the head there! I'm not giving up, going to try some different drs and May well have to come back to dr S tail between my legs...

My depression has been at its worst which can be another side effect apparently. Difficult to know what's from the miscarriage and what's from the drugs side effects. Had a scan with dr S today, he actually said well at least there was no bleeding while you were in the US so it didn't ruin your holiday! (Wtf?!) yeah cos it's the bleeding that's really upsetting, not the loss of another pregnancy... The hardest bit was that he said whilst we were discussing testing the tissue and cells that he doesn't think it's worth it as I wasn't taking pred from ovulation only from BFP (I.e as far as he's concerned that was definitely the cause) hadn't blamed myself up till this point but now I'm kicking myself wondering what if...

Arrrggghhh! Definitely in the anger stage of mourning. Apparently sac still growing 8+4 without the baby, anyone got any experiences about natural mc at that stage and size? Will it really bloody hurt? Dr S didn't say anything about pain management, he told me to do d&c but I don't fancy it and my last private one at Kingston cost thousands with all the testing.

Free- hope you're having a nice holiday and waves to everyone else xSmee

brownstag · 08/01/2014 20:32

Smee, what a dreadful thing for Mr S to say. I had my DS after only starting pred a few days after a BFP so I really don't believe that can be the cause of your miscarriage, especially at 8 weeks, so long afterwards, and how could he possibly know that for sure anyway?. And of course he can say that if you don't get the products tested because who can say otherwise?! I should get them tested.
None of my miscarriages that late have been natural so I couldn't say what it would be like. Both my miscarriages where I got to 8.5 weeks were ERPCs; one was only discovered at the 12-week scan.

Buzzybee123 · 08/01/2014 21:21

smee I am sorry that Mr S was so insensitive, he seems to have lost the plot a bit and has become very money grabbing, he has become very opinionated as well, I had a falling out with him last year due to his poor attitude. Don't let him upset you with his thoughtless comments, you have enough going on

hello to everyone else, I shall read and catch up on everyones news

bakingtins · 08/01/2014 21:51

Well I was told to only start pred from BFP (Prof Q's protocol) and it's been fine. I would think if it was all wrong in week 3 you'd never have got that far.
I've had 4 natural MC at 8-10 weeks. I have normally had very heavy bleeding and big clots leading up to passing the sac, so you do need to be prepared for that. Never had an ERPC so can't compare the two.

Smee3 · 08/01/2014 21:52

Thanks buzzy we and brown stag, both your posts really helped me tonight xx smee

Smee3 · 08/01/2014 21:54

Baking tins- crossed posts. Thanks for letting me know about your natural mc. I've only had one natural at 7 weeks (sac was 5-6 weeks) so wasnt sure if pain gets worse with extra 3 weeks growth. Xx smee

Tumtimes1 · 08/01/2014 21:55

Hi team I'm ok thanks. Very obsessed generally tho of course but trying to remain relaxed and calm.

Reading stuff like Mr S saying that smee's miscarriage was caused because she didn't take the pred from ovulation only compounds my worry. (I started my pred at 11dpo) I have an appointment booked with Mr S for an 8 week scan which is ages away, but the thought of anything being wrong and him saying that to me, honestly makes me never want to deal with him again. I have prednisolone enough to get me to 9 weeks though. I will see how I feel nearer the time.
I have an NHS scan on the 22nd so just under 2 weeks to go. One hurdle at a time I think!

Thinking of smee and luna.
X

Smee3 · 08/01/2014 22:09

Tumtimes, I'm not sure how many weeks you are but please don't let my experience stress you out more. I was actively avoiding ttc in November as I didn't want to risk an MC over Xmas. So I didn't get my bfp till 5 weeks and didn't start the pred or progesterone till then, that's a lot later than you. My last mc was a genetic issue so it may well be that this one was too. Try and stay as relaxed as you can the chances are that everything is absolutely fine. Xx

Thinking of Luna too, hope you are as ok as can be xx smee

teamdozie · 09/01/2014 06:11

Smee that is dreadful what he said to you! I knew he was opinionated and had no bedside manners but that's below the belt! I must admit a few months ago I wanted to go to ZW but DH convinced me to stay! As we said we would give Dr S two goes! But I think I may have punched him if he said anything like that to me! I'm so disappointed!

Tum sounds like we may be roughly at the same stage! It's so crap that they are ages away! Try not to fret! You are doing all you can! Like baking said Dr Q has you in pred from BFP so it can't be that bad if that's what some Drs do!

I heard from my NHS consultant yesterday and she offered to see me as little or as often as I like! So trying to convince DH to see her sooner! But if not I may see her in between Dr S scans!
Will you be seeing your NHS dr throughout?

Morning everyone!!!

Xx

OP posts:
Tumtimes1 · 09/01/2014 06:57

Hi smee I'm only 4weeks 3days currently so I have just under 2 weeks until first scan which is the 22nd. I've been thinking on this one, if someone did go to full term but hadnt started their pred till after their bfp, would mr S therefore not be able to attribute the success to the prednisolone then? I'm sure he still would. The more I think about it, the more I think he was talking crap. Don't blame yourself especially over something you can't possibly know with no testing.

Ooooh are we team? How far are you?
I'm actually doing both NHS and Mr S. my first scan is NHS as is my 2nd and I have an 8 week scan booked in with Mr S. in previous mc's I've only ever got to 6.5 weeks so we shall see.

Despite my worrying I do still feel more positive about this one knowing I am armed with all these drugs!! :-) xx

teamdozie · 09/01/2014 10:40

Tum I am 5 today! That's great that you are having a couple on the NHS too!
Positivity is the key!

X

OP posts:
willitbe · 09/01/2014 11:12

Tum and team - it is great to have two others so close in the stage of pregnancy as me. Fretting together!!!!

WARNING TMI re Preg loss below, do not read unless you have to!

Smee - sadly I do have experiences of slightly later first trimester pregnancy losses to share with you. One lost at 8+4, I had not a huge amount of pain compared to earlier losses and/or birth contractions. But the bleeding went from slight to very heavy very quickly. I ended up going to hospital as the bleeding and huge clots was dramatic. The hospital gave me morphine for the pain, but this was more for them than for me asking for it, and that they needed to manually remove some clots from the vagina. Sorry if this is TMI. I was released from hospital as soon as the bleeding had subsided and the morphine worn off. It was a bit of a shock the following day whilst walking around asda, to feel one final need to push, and went to the loo and passed the sac and placenta into my hand (don't know what made me put my hand down there in the first place???) After that there was only slight bleeding and no more cramps at all. All over within 24 hours (having waited a couple of weeks to miscarry)

My last loss at 9 weeks 2 days, was similar, although as I had only had the first scan the day before I did not know how the pregnancy was, the baby was measuring 7 weeks at this stage. The bleeding started in the morning, light and no cramps. By afternoon the bleeding had started getting heavier, and as I was an hour from the hospital I drove myself to A&E just in case. I got there and had to park in the car park and walk upto A&E (the most stupid thing to do!!!!), By the time I had got within 20 metres of the door I was loosing blood heavily and getting some contractions, which were more uncomfortable than painful. By the time someone helped me in the door I had an enormous contraction and a huge (and I mean huge as in felt like the whole of my insides) clot came out blood streaming down me. Passing it was not painful, more the kind of feeling that you get after giving birth, that relief. I had more clots and bleeding with very little pain for another 2 hours, then it stopped, however the hospital insisted I take some meds to contract the womb down to make sure everything was gone, as they had not seen the baby in with the clots, so was still in me. I did not see this pregnancy pass.

Another loss at 7 weeks 4 days, was reabsorbed gradually, passed the sac at 11 weeks with no pain, and only slight bleeding.

Another loss that I had confirmed at 6weeks 5 days, I just reabsorbed over the next few weeks and had normal period at 11 weeks.

I only have one experience of ERPC at 11 weeks.

Smee - I hope that this is not TMI, but might help you to know the different kinds of experiences that you might have. I hope that it goes ok for you.

LunaGL · 09/01/2014 11:32

Hi All thanks for everyone's messages. Had a busy day organising things yesterday hence the silence.

Have my ERPC booked for tomorrow morning and have managed to get it covered privately through work. Was nearly in tears yesterday morning after a conversation with my local EPU who said that they would only scan me Fri morning and would then need to scan me again next week before they would book me in for the procedure. After so may losses, DH and I agreed that to have the foetus genetically tested was vital as it may give us answers that we have no been able to get before, not having had a pregnancy go so far. At least something positive might come out of this awful situation.
This morning had another scan just to confirm 100% that the baby had died. What is worrying me is that at the scan on Sat showed that the baby was fine and measuring 7+4 which was the exact size, and then a couple of hours later it died. Can't help but worry that my scan (which was meant to reassure us) could have potentially been the cause of the loss. May never know (and the genetic testing may give us better answers) but it's there at the back of my mind non the less.
Re the comments regarding Mr S, I have to say that I agree with his very abrupt and matter of fact beside manner. He wasn’t exactly caring in his delivery of our terrible news and there was no offer of a room for us to sit, or time to digest and then ask questions. We really felt that he couldn’t wait to get rid of us. Louise has definitely been better to deal with. We have decided to have one more go on Mr S’s protocol but then stop. I don’t think that I can take anymore but don’t want to stop after only one try. At least two attempts and I can say hand on heart that we tried everything.

Waves to you all and again thanks Thanks for your messages. Its great to know that you are all there for advice and support in both good and bloody awful times.

VillageMum · 09/01/2014 12:43

Luna don't lose sleep over the ultrasound having been the cause of this. You had bleeding before the scan so tragically something was already happening, although no one was able to pinpoint it. It was just an awful coincidence that things stopped on the Saturday... it's so hard when these losses happen without any apparent logic but do not blame yourself for any part of it!

Know what you all mean about Mr S's brusqueness. So far I've found him efficient and pleasant to deal with, if blunt, but his comment to Smee is just appalling. The sad truth is that the professionals have all become to some extent desensitised to what they are dealing with. And they just do not care, on a personal human level, about our losses - perhaps they can't afford to. I used to expect compassion from them but I don't any more - I try to get through the consultations with as much composure as possible, get the info I need, and then rant and offload to DH about the crassness of it all later!!

Tum I hope baking and brown's experiences of doing fine after starting pred on BFP have reassured you.

Team glad you are getting support from your NHS consultant re scans!

Hello to everyone I may have missed too. Second day of pred this cycle and the incredible drowsiness continues. At least I think it's the pred and not the Ovitrelle. Don't think it's stress, Smee, I'm pretty calm at the moment, and this dopiness feels drug-induced! How are you managing your depression? I'm wary of developing it from the pred too...

willitbe · 10/01/2014 07:08

Luna - thinking of you today, I hope that it all goes well, that everyone takes good care of you.

teamdozie · 10/01/2014 11:26

Luna hope all goes well today! Thinking if you and DH! Xx

Willit how far along are you now?

X

OP posts:
suemays · 10/01/2014 12:33

Good luck for today luna we are virtual hand holding.

VillageMum · 10/01/2014 13:19

Luna thinking of you and hoping you can rest this weekend xx

Team how are you feeling today?

I have a question about pred for all you knowledgeable ladies. Since it's an immune suppressant, does that mean you are more susceptible to catching whatever's around while taking it? Am assuming so since last month I caught the norovirus when I normally never catch a thing! Do you all try and avoid people in daily life with the lurg, or do you just soldier on and hope for the best? Was looking after a friend's DS this morning, the poor lad has a throat infection and badly swollen glands, and it was only afterwards that I suddenly thought, eek, should I be doing this while ttc on pred?