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 Cherieblossom and welcome, hope all goes well for you in this ttc cycle.

Team, are you considering IVF in order to have CGH or similar?

Brown 7 follicles if one of your ovaries is compromised sounds pretty impressive to me .

Baking, how did your OSCAR appointment go?

Well, CD3 today and started letrozole yesterday. No funny side effects so far though I do wonder if having the follies stimulated this way is going to feel different to usual...

Waves to everyone, hope you have all had a good weekend.

Village, good luck with this cycle. I didn't ever have any side effects, but I was more aware of stuff going on my ovaries, and ovulation itself was more painful than usual (I always feel have Mittelschmerz but this was much more obvious).

Hi brownstag
I don't have NK cells but my IBD got so bad in early pregnancy in the past that it made me miscarry. Basically my immune system was fired up and caused the m/c. The foetus got analysis and there was no genetical problem.
It actually happened 3 times :-(.
I take pred and 6MP for IBD as I really want to avoid another mc.
So fingers crossed...
I am positive though and feel like this will be different in a good way.
Let's hope my gut feeling is right.

pebbles have been trying to pm you, not sure if you have got it??

Thanks Brownstag, I always get Mittelschmerz of the 'yowzer' variety too so am curious to see how letrozole will affect that.

Hi village yea I am thinking about it. But because karyotyping has always come back clear they have said there is no point!

I've just seen Dr S with regards the latest and once again karyotyping was fine. So the plan of action now is still steroids but 25mg, carry on with hydroxy and aspirin. But I will be on cyclogest from OV not Positive and intralipids from OV and then at 6 wks and the main part of the treatment will be IVIG! And the highway dosage which is the most expensive!
Oh yea I nearly forgot and heparin twice a day!

We are going to start SO which will take the presure off!

baking how are you?

Xx

Highway = highest

Mr S is now prescribing IVIG? Wow, I'm impressed. I haven't heard of him prescribing that before.

Sorry to hear your history, Cherieblossom. So has your IBD been a recent thing? Did you it not have it during your first pregnancy?
Team, good luck with the SO. It must be so frustrating knowing that there's nothing genetically wrong with the babies you produce, but your body just won't let them grow.
Just can't decide what to do with my remaining months of being 42. I want to do IVF but everything is stacked against me. My husband doesn't really want to do it; I haven't quite got the 5k and my mum says she doesn't think it's a good idea for my mental health and won't lend me the money.
But I could afford loads of SO, but worry that I'll just get pregnant with another genetically abnormal egg again and it will waste more months ...
How many cycles do you think MR S would allow of SO? I've done 4 with him and 4 of clomid with the hospital.

I did 7 cycles of SO with Mr S brown .. if that's the route you want to take, why not email Louise and discuss it with her?

Yes, I will, thanks, Ari Were they all letrozole? And what happened? I wonder if there's something else I could take that might get more eggs out at this desperate stage of the day. Even though my other instinct is to preserve egg quality and to avoid drugs!

Also, if were to have some IVF in Athens in February, say, how would I know when to book it for, as my cycle varies by up to 5 days per cycle?

Hi everyone, welcome to cherie
team great that you have a new plan, but pretty crappy to lose a healthy embryo learning that was a real low point for me after MC4. I hope Dr S has the answer this time, sounds like he is pulling out all the stops for you.

OSCAR screen went well, low risk for trisomys and measuring right for dates. Off all the meds now which feels strange, though I feel much better off the pred. Met my obstetrician today as I'm considered high risk, due to the steroid treatment and because I had a major PPH after DS2. Can't really think that far ahead though, still taking it a day at a time.

Ari when I was originally tested my NK cells didn't respond to any other treatment other that the high dose of IVIG but we decided to go for the mixture of stuff instead due to the cost. But we discussed it and all came to agreement that this is the way forward. Has anyone else had IVIG?

Brown it is so frustrating! The thing that is keeping me going is the fact that I've got to 20 weeks before and the baby passed due to unrelated causes!
Defo try the SO! It won't harm anything! And if that doesn't work go for IVF! I asked DH the other day if this is all worth it and he asked me "how much do you want a baby?" J had the answer already! I'm sure you do too!

Baking I'm so pleased for you! It's defo hard but I'm sure I'll get through it!! All healthy pregnancies on here give me hope!

Brown. CAn I just ask why you would consider IVF in Athens?

Xxx

Sounds brill, Baking. So much better off the pred would have been an understatement for me at that point. I was counting down the days.
Team, only that the Serum clinic in Athens seems to be so excellent, and the treatment cheaper, although not by the time you've got there, etc. They've already been so helpful while I'm just enquiring and I'm attracted by their approach with older ladies, which is more individually tailored and also tries to avoid nuking the ovaries! Whereas my local clinic said for me they would give the maximum stimms and as Serum have shown me with studies to back up their claims, high levels of stimms can increase aneuploidy. On the other hand, my local clinic is 15 mins on the bus! Decisions, decisions!

BUT 15 mins on the bus is irrelevant if it doesn't get you your baby brown. I would go for serum - in my experience local clinics only advantage is just that- they are local but why spend the money when the odds are lower. Call penny x

brown I did all Letrozole, yes, and while I responded well-ish, and got pregnant twice while on it, both ended early. Could have been down to my eggs being rubbish, or just my cr@ppy immune system. Or both. We'll never know. IVF - I would consult with Penny over that, she is best placed to tell you how to work with slightly unpredictable cycles. And having been out to Serum twice myself now, I would do it again without hesitation - will do, if I can get the money and DD is better - despite the distance. In the end, as duggs says, distance is completely irrelevant to me, getting a baby is all that matters.

Why don't you arrange a telephone consultation with Penny? She's fabulous, very reassuring while being totally down-to-earth. There's no commitment, a consultation is just that, and Penny is willing to talk to you whether you choose to go with Serum or not. Plus their consultations are free, which makes a nice change these days.

Has anyone ever gotten successfully pregnant on letrozole?? No chemicals or miscarriages afterwards? Hunting for that person/people.

I've just sent off my form to Serum ... It's amazing the consultation is free. Normally you have to pay £250 just to look at the inside of a consultant's office.
duggs: pregnant yes, successfully, no. Also my friend LJ, pregnant several times, but successfully, no. But I suspect that's just because we're a pair of old crones with rubbish eggs. Perhaps you should just ask Louise for some statisitcs. And if there isn't anyone, why is the treatment being offered?
As to the 15 mins bus ride, I have to take the reluctance of my DH into account ...

Crikey duggs, I surely hope letrozole has a good track record of producing successful pregnancies, as I'm on it! Just did a consultation with Dr Google and it does seem to have a better performance profile than clomid.

Baking that is the most brilliant scan news. Enjoy being pred-free

Brown 42 is not yet desperate!! You have time, especially if you plan your next move as carefully as you are.

Team I'm so glad Mr S is pulling out all the stops for you. And your DH sounds like a lovely, supportive person.

Hello Ari, hope your DD is doing ok?

Took my last dose of letrozole for this cycle today. I haven't had any side effects, other than feeling rather down - a peculiar, hormonal sort of gloom. Wonder if anyone else has had this during SO?

Brown I only ask as I'm greek myself!
They sound really good!

Village I just hope it works this time! DH has had his moments but he is brilliant! I'm extremely lucky like all of you guys really!!

Has anyone else had IVIG? And has anyone tested their NK cells during pregnancy and treatment?

AF arrived this afternoon and Dr S told us we could start right away with letrozole as soon as it arrived! So because it came this afternoon do I count tomorrow as day 1?

Waves to everyone else!
Xx

duggs I have a vague recollection that someone - possibly more than one? - did indeed get successfully pregnant with SO, much much earlier on in the thread's history. If free pops in at all she may remember better.

brown I don't think there are many more reluctant than my OH, I think he's still secretly pleased we weren't successful and never says anything at all when I mention a next cycle, he just changes the subject. Yet I somehow managed to get him out to Serum; don't think he'd do it again, but then of course he won't have to. He was on the consultation call with Penny and I think she actually impressed him; perhaps worth trying to get your DH to be on the call if/when you have one?

village Well remember that Letrozole does mess around with your hormones, so it's not surprising if you're feeling a little hormonally wobbly. I didn't have any side effects with the Letrozole either.

team I think generally people say if your AF arrives in the afternoon you count the next day as day one, but to be honest I don't - as long as it arrives before bedtime I count that day as day one. If you're not sure what's best then suggest you ping Louise - I think IIRC she does fall into the 'next day' camp, but best to check with her. I've certainly never had IVIG (haven't got the £££) - duggs, did you? - but there are loads and loads of ladies over on FF who do, and equally that have their NK levels tested during pregnancy.

Team just popping by to say I had IVIG as part of my IVF cycle in July this year. Without it I really do not think I would have got to where I am today (24 weeks pg).
I had a cytotoxicity test which showed how my NKCs reacted when pg tissue was dropped in to my blood - they went mad! The only thing that nuked them was the IVIG so that was what I was prescribed. I cannot remember the dose, but I believe it was the strongest one. No steroids or Intralipids, just IVIG.
I had my first infusion on the day of egg collection, the second after a 6 week scan showed a heartbeat and then one last dose at 10 weeks after another good scan. I didn't have my NKcells tested at all during that time as the clinic I was with (Lister) do not believe in testing again, unlike ARGC for example. Also, ARGC will keep testing and giving infusions until much later in pg, but my consultant does not think there is any need.
The infusion itself is absolutely fine. The only thing that hurts is paying the £££ for it!!
I was given an IV antihistamine before each infusion to reduce any chance of allergic reaction and this together with the IVIG made me very cold, lightheaded and drowsy. I had a lovely bed to snuggle in whilst it was being administered, but if you won't have that, make sure you take a nice warm jumper, or even better a blanket! I found my wrist felt rather weak for a good few weeks after each of the infusions, but it is completely back to normal now. Hope this helps.

Waves to all, especially duggs, ari, pebbles, sue and brown

Thanks breezy. Is so interesting..... I had that test that Gorgy does too... It tests how your nk cells respond to intrallipids and ivig. Mine did respond to the intrallipids.... So ok, but on the elsusive good egg hunt. Glad you are still doing so well x

Thank you Ari I think I'll count tomorrow as day 1!

Breezy thank you for all the info! How long does it take?

I think Dr S is throwing everything at me, I just hope it works! He has told me I need the high dosage. I must ask him about the cytotoxicity test and if he has already done that one.

The fact you are 24 weeks with IVIG gives me hope! Thank you! So you know what you are having?
Xxx