TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

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!

HI Team sorry to hear about the bleed - fingers crossed its nothing. xxxxx

I would echo what Ari says, Cleo. Like you, I am and always will be very grateful for Mr S's treatment that gave me my son, and I also like him very much, and he's certainly always been friendly, polite and reassuring to me and my husband, and I continue to recommend him to others in the same situation. But I feel any progress that has been made towards getting me baby no 2 has been through my own research. In fact one of the treatments that I feel has helped me he was positively against as offering no benefit. And as with Ari, it's a question of time which many of us ladies just don't have.
My own experience has also been that Mr S always seems expremely busy, that there's very little time to digest any information during the consultation, and there's an impression of being hurried out for the next patient. My NHS consultant, on the other hand, I always feel has my individual case history at his fingertips, and is prepared to spend time with me discussing everything I need to know. But despite all that, I have no intention of going anywhere else, unless I have IVF, in which case I would probably go abroad. Basically I consider Mr S to be my provider of immune therapy, not the solution to my general problem of waning fertility and any other causes of recurrent miscarriage. And as for being positive, I personally am insanely positive about getting baby number 2, even though my logical mind doesn't agree!

Team, fingers crossed for you. How many weeks are you now?

Hi everyone!

Village managed to change my scan with Dr S for this week so I am seeing him Wednesday now! But I got seen by my NHS consultant today to see what was going on!

So no sign of any bleeding or the cause of it either! Baby is measuring spot on which is so reassuring considering it's always measured smaller! She wants to see me every week! So I'm seeing her again next week!

Tum thank you! Legs arms fingers toes etc!! lol!

Brown I'm 5+4 so still very early days! I keep repeating Bakings "I'm pregnant today" mantra!

How is everyone else? Luna hope you are well!

Xx

Ah team thats brilliant that they scanned you and all is good! YAY! xxxx

Hoorah, Team!

Team - that is such great news regarding the scan measuring correct for dates. Has the bleeding stopped for you?
I had my hospital appt today, got the prescriptions for the pred, heparin, aspirin and progesterone. Started the heparin today. I am 5+3 today, and although they wanted to scan me today, I declined, and instead will go in 2 weeks time, all being well. I am feeling really good at the moment, I am sure I am on my prednisolone "high", and being on pred makes me feel happy. But at least it is stopping me worrying. I am just taking one day at a time.

Thank you everyone! I'm all that more hopeful! I have a few cramps this evening but I'm putting it down to growing pains!

This is all so very stressful!

Xx

Good news Team glad everything looks good on the scan.

team great news - and don't forget, if you're on aspirin and heparin, any slight bleeding at all will be amplified ten-fold, so it may have been just something trivial anyway.

Thanks Baking how are you? Getting excited? Will you find out the sex?

Ari your right! Louise told me to stop the aspirin and double up on the cyclogest! I've stopped the aspirin but can't bring myself to double up on the hormones! They ruined me last time! And they only delay anything if it goes wrong!

I've had a bit of brown spotting today but I'm trying to take it easy! Does help the fact I have to jump over a fence to get to work lol!!

Waves to everyone else!

Xx

Team what a relief, that all was well at the scan and that you only have brown spotting now. Hang in there! xx

Hi Team glad its down to just spotting now - are you taking the asprin for anything specific or just as part of Shehata's usual protocol?

I am on double progesterone as thats what NHS prescribed me. When you say it delays anythign going wrong, what do you mean, as in MMC?

Thanks any advice is appredciated x

Sorry for the million typos!

team have you had your progesterone tested, or does Mr S still not ask for this? With Serum (and I believe other IVF clinics, and probably Dr G as well) they ask you to monitor progesterone as well as hCG to start with, and adjust progesterone intake as necessary, not just 'double up' as a matter of routine.

tum Progesterone dropping can be a sign of impending miscarriage; if you take progesterone suppositories/pessaries/injections to keep your progesterone levels high it can delay a natural miscarriage happening, although it can't actually stop a pregnancy that is definitely going to fail from failing.

Village it is a relief but I wish it would stop all together! How are you feeling about this month?

Tum I was put on baby aspirin 2 years ago when we lost our baby at 20 weeks and since then I've been told to take it in every pregnancy!
And progesterone will do what Ari said!

Ari I haven't had my progesterone or HCG checked! I do t think he does it! Come to think about it he doesn't really test anything g while your on his treatment! I did ask if he tests you NK levels when you are pregnant and he said no because they might show high but actually all is well! A bit confusing!

And as far as doubling up is concerned I think they just say it! But that would be 800mg a day! I felt awful last time on so much!

Do you think I should ask to have both tested?

Xx

That's a difficult one team as Mr S does not appear to like people suggesting things outside of what he's asked them to do. If it were me (with the experience of already having asked him such things) I would actually just go and get it done privately myself, there are loads of places you can get your blood tested. However, perhaps it might be worth your while dropping Louise a line and asking if you should have your progesterone level tested .. but be prepared for her to say they don't usually advise this. It's hard for me to advise, since I haven't been under Mr S's care for over a year, and other places do things very differently to Mr S - including monitoring NK cell levels certainly through the first trimester, in case treatment needs tweaking.

Has to be your call, really :)

Some of the progesterone suppositories are 200mg twice a day and some 400mg once I think. How did they make you feel bad, Team? I like progesterone; quite relaxing. I would pop one in and be asleep instantly. Although my skin would be a bit spotty and greasy maybe.
I find that progesterone suppresses bleeding but once I stop, I will get bleeding within 3 days if it's an early miscarriage. Similarly that happens if I use progesterone to lengthen my luteal phase; bleeding happens after 3 days of stopping it.
Of course if you test progesterone while on it, you won't get an accurate reading, but presumably it should still be going in the right direction.

Re: progesterone, in my experience progesterone just delays time to miscarry. Off it I miscarry under 6 weeks, on it I miscarry between 7 and 12 weeks. It is not something I want to be taking, but on reading around about immune issues and recurrent miscarriage it appears to help some (just not me)!

All I can say about it is that during my only successful pregnancy I didn't use it; I think if it's a healthy pregnancy you don't really need it, but I like the reassurance it gives me, knowing that I don't have to obsessively worry about bleeding (as I never have any on it) but as you say, it might be a false sense of security. But then I obsessively use pregnancy tests instead, so I usually know that way if something's wrong.

I was on progesterone 400mg twice a day in first trimester, and in my last unsuccessful pregnancy. I don't think the delaying a MC is that much of a problem, presumably we are all having early scans so you'd know fairly quickly if it had gone wrong. It would be different if you were taking it assuming all was ok until 12 week scan. I took it earlier this time, from day 21 to support luteal phase and implantation. There's good evidence to say it improves IVF outcomes used like that, I think the jury is still out for RMC uses.
I don't know how much of the feeling crap to attribute to progesterone, pred or pregnancy hormones!

Ari I know what you mean! I had asked him about monitoring my NK cells and it was "we don't need to" and other things too!

brown I was on 400mg twice a day! I was extremely hormonal and had terrible mood swings! I had extremely greasy hair and skin! And so spotty!

I agree that it would just delay the inevitable if it was to go wrong!

Baking dr S made me take it from day 21 too this month so I'm sure that helped this baby stick in the first place! I'm seeing Dr S tomorrow for my first scan with him so I'll see what he says about taking more!

X

Hi ladies,

I've had 12 misscarriages and am currently pregnant (not sure how far tho) although this pregnancy doesn't look promising. I just wanted to ask you all did you go to pay privately to get the nk cell test done or did you manage to get it done on the nhs.

Ive already spoken to a few ladies who said they had it done privately but just wondered if there were any lucky ones that managed to get it done on the nhs.

Regards xxxxx

Hi ladies,

First up Congratulations to Tumtimes on the positive scan, so relieved for you that it all looks good, and I hope your spotting slows down- its just so stressful and time really drags at this stage.

Welcome to desperatelywanttobeamum and a tentative congratulations on your pregnancy (only said that way because I cringe when people congratulate me) 12 miscarriages, I can't imagine going through it that many times and i'm so sorry you have been through it. I"ll be keeping my fingers crossed for this pregnancy for you. My NK testing was with DR S and i paid privately, I don't think the NHS covers it but please correct me anyone if i'm wrong.

Cleo, I was unsure whether to respond to your comments, as I don't want to have any heated discussions but I feel they may be to do with my recent posts. I definitely didn't mean to cause any offence or put anyone of seeing Dr S- and I don't think my comments would, especially in the context of this thread where there is such a mix of positive and successful experiences around. This thread is a positive thread- we all support and listen to each other but unfortunately in life not everything is positive and successful and reading ALL the posts (no matter whether they were a positive or negative experience) on here in the build up and process of this latest miscarriage under the care of Dr S was a great comfort to me. I've cried and empathised over all the ladies losses right from thread 1, and whilst I wouldn't wish a miscarriage on anyone it really helped me reading about other womens losses and less positive experiences with Dr S in terms of preparing me that mine might not be successful and it helped me be less shocked and feel less alone and less of a failure when I was dissappointed by the consultations. This thread and being able to talk to the ladies on it has been a lifeline to talk about a subject and experience that in real life people just aren't comfortable discussing. I also hope and think that any ladies in the future that have a similar experience might feel more prepared or less alone by reading all of our experiences, no matter what they might be.
I've learnt a huge amount from everyone on here and also found new avenues to explore that might be right for me from some of the other ladies that have had difficulties and had to try other drs. Sharing information and experiences can only help us and others as far as i'm concerned.

x Smee

Beautifully put, Smee.
Desperately; I'm very sorry to hear your story. With the funding, I think it depends on which trust you are with. 5 years ago when someone first told me about Mr S (a nurse who had worked for him and successfully had his treatment) some trusts were funding his treatment, maybe the local trust that he worked for, for instance. But that may not still be the case. Maybe ask his office.