TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

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!

Hello PQ! Glad to hear you're well although hope it's not too stressful for you with the developmental issues. Am sure he will catch up, and he's sooo cute. Coffee welcome. As is wine...am enjoying being able to drink :)

Hi team, that's amazingly brave of you - not sure I could contemplate an ERPC without general anaesthetic! Totally understand your need for closure though and to get it behind you before the weekend. Hope the fertility show was good! I'm OK thanks, feeling a bit apprehensive about follow-up with Mr S this coming Wednesday when we should finally know what, if anything, is wrong with me... all the old wobbles about ttc and possibly risking mc again are coming back...

Waves to everyone.

Welcome back PQ, can't believe your lo is a year old already.

Sue thanks for asking, I haven't been updating my progress as things seemed to change every five minutes. I should probably post on the other thread, but we had 2 Day 2 embryos transferred today. 6 eggs collected after max dose stimms for as long as poss, but three were immature and 1 fertilised abnormally so as there wasn't a choice about which ones to put back they put them back on day 2 rather than day 3. One was average quality and the other slightly below average, so we will have to wait and see. This was a similar outcome to our last cycle, so apart from chronic acne the DHEA doesn't seem to have made much difference, but we will see once the dreaded 2ww is up! Sorry to bore you all with my news.

Team you sound very resilient. What was the fertility show like? We were all booked in to go today too to an egg donor seminar but were given strict instructions by the acupuncturist not to go after ET.

Hi Baking I think I've just developed thick skin! We painted the bedroom that was/will be a nursery (eventually) and I just thought what's the point!!!??

Zita west had some good information! And I like their approach! I'm starting to think that Dr S might be too aggressive for me!! But we shall see what the results say!
Would you recommend Zita West?

Village I know exactly what you mean! I'm starting to think that maybe someone is trying to send me a message!!
I'm also thinking how many MC do I need to have before someone says "you need help now" ..
Good luck on Wednesday!

Hi Belly show was good! We only visited zita west and Dr Gorgys stand. I felt some stands including dr Gorgy were all about money! 3 for 2 on IVF packages etc etc. a lady from zita west was the friendliest and most informative..

Have you had you ET?

Xxx

Choccy / Team thanks for the warning regarding the timings of the meds. I will change my Hydroxy taking to the evening with the aspirin as at some point I will be on Pred so best to get into the routine now.

Am feeling really confused about the different programme and meds so trying to reach Louise now that she's back from her holiday. Mr S said that we would be following a combined programme of Complex and Very High NK Cells but has sent me a prescription for SO which is what we also discussed and agreed. Am just unsure what to be taking and when. It's probably nice and simple but with the information overload at the appointment I obviously missed something.

Village good luck with your appointment on Wednesday. Can I recommend that you record the conversation if you or your DH have a smart phone. For us it would have been easier to have something to listen back to and digest.

team I've no experience with any of the "London lot" but others on the thread seem to have good things to say about Zita West.

village good luck for Wednesday

belly good luck for the 2ww. Fingers crossed.

Thanks Luna for the tip about taping - he certainly does talk nineteen to the dozen! The old pencil and notebook might not be up to it. Hope you managed to get some answers from Louise about the meds.

Team, don't convert that nursery into anything else yet - there is always a way! Even if it's not the route you originally planned on following...

Thanks Baking, hope you are still feeling well and confident

Belly very best of luck during the 2 ww!

Belly you are certainly not "boring" us. Fingers crossed for you honey. Can I ask, do you know what you'd do if this ivf doesn't work out? Have you considered donor eggs? Not that there is any reason it won't - I was just wondering ? X

Thanks Village

We have painted it and we are getting a new carpet put down on Friday! I am going to store all the stuff I have already bought from when i lost our little boy.

Not sure what to do now! Not sure if we are entitled to IVF on the NHS. But I think we need a little bit more help!

It's all so confusing! I feel despondent today!

team it is totally unsurprising you are up and down. Do try to give yourself a bit of time and space to deal with it all, the last few weeks have been worse than ever on the old roller coaster.
I don't really understand the rationale behind using IVF if you are able to conceive naturally, unless it's for embryo selection? Are you having testing on your latest loss? I would think if it was a chromosome problem then selecting embryos becomes an option to discuss, but I doubt it's available on NHS, didn't duggs mention £30,000

I'm doing ok. I have v mixed feelings about weaning off the preds. I can do without the insomnia, hunger and muscle weakness, but I'm terrified it will all go wrong without them. Protocol is to start weaning off if 10 week scan is ok (Thursday) and be off by 12 weeks. I have heard of 2nd trim losses being attributed to NK cells, is that because placenta didn't form properly in the first place then can't cope later? I know I should trust Prof Q as she has got me this far but I can't help feeling anxious. My local consultant has no experience with NK issues (so I am "interesting").

Hi All

Just came back on to update you all about my news.

But I've been very quickly catching up, congrats Choccy. Team, Sue and Free I'm so sorry you've had bad news again, am thinking of you all. Sorry for anyone I've missed, I haven't caught up properly with everything.

About me, I went for a follow up with Mr S and it wasn't good news. He thinks that I probably have CHI, a condition which affects the placenta, and it has a high recurrence rate. He suggested that next time I double up on hydroxy and Clexane, take steroids until 20 weeks and do intralipids from 4 up to 32 weeks (which was the plan last time too with the intralipids). But he said he can't promise anything and is running out of ideas. I'm so glad we went to see him as we were planning on trying again in the new year but this has made our minds up that we won't try again. I was thinking of seeing Dr Gorgy but having researched a few things I think the only thing different would be using ivig but there are still no guarantees with it all. For the newer ladies - over the past 3 and a half years I lost my son Oscar at 5 months old as he was born prematurely and I lost my son Joey at 5 months pregnant in August, as well as having 7 early mcs. I just can't risk losing any more babies and going through the agony of another funeral, we really are at the end of the ttc journey. We are now looking into surrogacy. I know some of you follow the blog of the lady who lost four sons to CHI and is now having twins through surrogacy, she gives me great hope.

Love to you all, I hope we all get our babies one day soon xx

Hi Baking I've relaxed a bit this afternoon as I spoke to Louise for Dr S's office and she made me relax! I just get so anxious! She told me to just wait and see what happens with the results and go from there. I must come of the steroids, and not TTC until we see him and I have had a clear cycle!

I thought of IVF cause I feel that maybe we need help in putting a healthy baby together! But like above we have to wait!

I'm glad you are doing well! It's so nice to have good news! It gives me and I'm sure everyone else hope! Try not to stress about coming off, although I know it's hard not to! It's all so exciting!

Mollie hello! I'm sorry to hear about your recent news! But I'm glad now you have some clarity and you can move forward!
Xxx

Baking, second trimester losses can indeed be caused by nkc according to Mr S but that's when you've not been treated. I know it's nerve-wracking coming off the meds when you are pregnant but in my experience no one has had a later loss for anything but other complications - nothing to do with nkc. You will be fine.

Mollie so sorry for your news. I don't know about that condition but will look it up. I'm relieved for you that you now know you're not going to face going through it again and I really hope the surrogacy works out. Please do keep us updated xx

Mollie you've been through so much but surrogacy seems like a positive option for you and wish you all the luck in the world. Who asked about embryo selection? It costs £3k approx. I had it done and i will do again as I've had at least 2 trisomies out of my 6 pregnancies and I suspect at least 3 more were chromosonal ( I was on treatment for those). Good luck pebbles. I've now got AF too so hopefully will start IVF on my next cycle end of this month.

Hey mollie ... Yes, I for one have been following that lady's blog for a long time, and am so pleased she is finally having success with surrogacy after the sheer heartbreak of losing four babies. I wish you all the best in the world and hope that you too have just as much success.

Mollie I am so sorry to hear of all the heartache you've been through. I wish you all the best on the next stage of your journey

Thanks all. I do feel relieved and more positive than I have in a long time. Its always good when someone can give you an answer and then you can have a way forward. I found a facebook page for CHI and can't believe how similar all of the stories on there are to mine so its good to feel not so alone. Quite a few people on there have done or are thinking about surrogacy. I will still come on here to see the good news from you all and keep in touch and will update you of any progress.

Have a good evening xx

Sorry to barge in but I am desperate for some advice and understand you ladies know a lot more than me on this subject.

I have a history of secondary infertility, but I got a surprise natural BFP a few days ago after a 6 wk Mc after IVF in early September. I don't have proven immune issues as only got as far as level 1 tests which showed raised IgA and IgM, but did have a sore throat for at least a week following ET during the IVF cycle which made me suspicious (HCG never got at all high so things went wrong much earlier than 6 wks).

Well now I find myself with a sudden onset sore throat (just this afternoon) and am terrified the same is going to happen again. I was so happy this morning as got a nice darkening line on a second test. I have had a cold for about 3 weeks which had just about gone. I know this could just be the start of another one but is there anything I can do in case it's not?

I have a lovely consultant gynacologist (who was going to perform a hysteroscopy) who today agreed to prescribe me more Cyclogest. He is not a great believer in immune issues but if I begged he might just prescribe prednisolone, I suspect. When I saw him last week he was quoting papers by Prof Quenby so I think he is not totally anti treating for immune issues. However I fear it might be too late- if this is an immune attack would it make any difference? Can anyone advise please?

Missmidden so sorry to hear you're having this worry and stress. I'm new to all of this too so hope one of the very knowledgeable ladies on here will be able to advise...

mollie it's such great news that you have found a way forward. All my very best wishes for the next stage, may you be holding your baby very soon!

baking hope you are doing OK and feeling more confident about weaning off the meds - it certainly does seem to be a very controlled programme, which is reassuring.

team hope you are feeling better too. I can relate to your anxiety as mine has had a surge over the last 24 hours. Just take it day by day and week by week. Once you get your results you will have more clarity!

DH and I went along to our follow-up appointment with Mr S yesterday. I've been diagnosed with high NK cells - not a surprise, given my four mmcs. So I'm on his high NK cells protocol: pre-conception aspirin 75mg, multivit, Omega 3, Vitamin D 50mcg, with 25mg prednisolone at ovulation and 400mg cyclogest at BFP followed by intrallipids at 6-7 weeks. This will all be familiar to many of you! He's also put me on hydroxy: given my grand old age of 44 and the fact that this is probably my final attempt at pregnancy, he wants to throw the lot at this. For the same reason he's suggested superovulation (with letrazole) next month. His approach seems to be to get that pregnancy going and to get on with it!

Now it's all real though, and we have a way forwards, I'm having serious ttc wobbles! Anxiety, fear of the whole journey starting again, of the physical and emotional toll, of my life changing, even, grotesquely, of it all working out. I feel profoundly ungrateful, but I can't help it. Is this normal, ladies?

Missmidden, just wanted to add: I'm on Mr Shehata's pre-conception protocol at the Miscarriage Clinic in London and Epsom, but I know that Dr Quenby's protocol is to prescribe prednisolone only from BFP, so it should not be too late to take it in your case. I don't have her contact details (perhaps one of the ladies on here could provide, or you could look her up at Warwick) but I hear that she's very approachable. Maybe you could call her and speak to her directly? Best of luck and I hope everything works out for you! x

Back again Missmidden - found the details online for her at University Hospital in Coventry. You can contact Professor's Quenby's secretary on:

Tel: 02476 96 7528
email: [email protected]

I'd just ring and ask to speak to her asap. All the very best to you. I know what this worry is like xx

missmidden I'm a patient of Prof Q and her protocol is progesterone 400mg twice daily from as early as poss (I was taking it from CD 21) pred 20 mg once a day from a BFP, clexane 20 mg once daily as soon as pregnancy can be confirmed to be in the right place.
The pred is broken down by the placenta so not much crosses to baby. There is a slight increased risk of cleft lip/palate, and of IUGR, I've been advised I will need growth scans in 3rd trim if I get that far. For you, there are likely to be some side effects but nothing too terrible, I've been v hungry & thirsty, weak arms, insomnia, fat face.
Good Luck!

baking If it helps we're told by our clinic to avoid salt and sugar as much as possible to help avoid the 'fat face' (and general weight gain) that comes with taking steroids.

Hi mrsM, cautious congratulations on your BFP. I know there are a few people who have started steroids slightly after their BFP and been successful. I recently had an accidental pregnancy (I'm beginning to think there's something in an 'unfussy uterus' theory as I've been pregnant very easily 6 times) and didn't start until 6 weeks. Unfortunately it didn't work BUT I have very very high levels of nk cells - Mr S said in the top 5% of people he sees - and I have also had a little boy on the treatment so please don't let me scare you. Do try to get treated ASAP to put your mind at rest that you have covered all bases. Hopefully this will be the one for you. Keep us updated!

Village great you have seen Mr S again and you have a plan of treatment! It's normal to get those fears. Having a baby is such an enormous thing even when it's much wanted after miscarriages!

Thanks free, I think on some level I must have stored up trauma from my mcs which I 've never really dealt with - and now it's just waiting there to bite me! A successful pregnancy also now feels possible for the first time and as you say, having a baby is such an enormous, seismic thing that I need to get my head around it again. Am beginning to feel the first glimmers of excitement since this morning! Hopefully anxiety won't surge that badly again (pity Clearblue doesn't make a monitor for this ).