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!

ari yes I am taking progesterone but this never happened with my last pregnancy. I just hope it goes soon!
Thanks for the info on vit e - I have been taking that twice a day so will stop now. I just hope it hasn't increased my nk levels and doomed this pregnancy already.

Luna thanks so much - I'd love the list if you could post it here or... PM me? Though I don't know how to PM... Goodness me, I'm going to check out the ingredients of those Zita West vits! Holding thumbs for you as you start on Mr S's programme, I so hope this is the answer you've been looking for - and trust for both of us it will be!

Ari how does this PMing work? Is there a special button? Excuse my ignorance! Very sorry to hear about your DD, hope all is ok with her.

sue and ari thanks for the dietary info, that's really helpful and doesn't sound at all bad-tasting. sue, glad you're feeling a bit better about your upset stomach. It does sound like a reaction to hormones or the unaccustomed wheat and dairy you've been having, as you say, and nothing more sinister than that. How far along are you now?

Hi to everyone!

village just quickly as I'm supposed to be doing bath-bedtime routine .. when you look at the page of messages here on the thread, look in the blue bar where people's names (nicknames) are with the date and time of the message, and you'll see an "Add message". That enables you to type a private message just to that person.

Mr S had me on a gluten-free diet for my whole pregnancy with my DS because my mum has coeliac disease; even though I tested negative for it, and also recently when I was tested for it again. That Genius range and virtually all gluten-free products have eggs in them to bind them together, and as I'm vegan, I can't have them. The only suitable bread I found smelled like a sweaty sock and was about £3 for 2 stale mouthfuls. Misery. I lived off rice for my pregnancy and then read afterwards that you shouldn't eat too much rice in pregnancy because it can contain dangerous levels of arsenic, which among things can cause low birth weight (DS was 6lb). Too much knowledge is a dangerous thing and all that ...
But now I love off bread. Maybe I ought to cut it out for a bit. And also I drink gallons of soya, and never got on with any milk alternatives until I came across Kara coconut milk. Delicious. Going to embark on the 5 2 diet to shift some of this post-pregnancy, post-pred lard.

What is your daughter's immune problem, Ari? Is it something that can be easily treated? Sadly autoimmune conditions do seem to be familial, even if it's not the same condition. Mr S is always interested in the whole family's immune issues; my mum has coeliac and my dad has arthritis and Reiter's syndrome, all autoimmune diseases, and I have endometriosis, another.

Turns out she has HSP vasiculiitis brown, which is where basically the immune system attacks the body's red blood cells. There is no treatment, apparently it resolves itself eventually but in something like 50% of cases the kidneys are affected, sometimes very seriously so, so it has to be very carefully monitored. :(

Ari very sorry to hear about your DD's diagnosis, must be a hugely stressful thing to cope with. Thanks for the PM info. So when you type a PM using 'Add Message', does it only appear on that person's page? Hope I haven't been doing this to any of you inadvertently, have been fairly reckless with buttons!

brownstag that's interesting about family auto-immune 'clusters' and has got me thinking - nothing major in ours that I know of, but my dad and sister both have a million allergies and since my first mmc I've developed fairly bad eczema. Wonder if there's a connection there somewhere.

Sue if you can, don't worry about the Vit E. Seems that these studies were conducted on mice and the ratio of Vit E to body weight would be far in excess of anything we've been taking. If you're on steroids they will be doing their work

bakingtins how are you doing?

Village, on the top right of your page is My MumsNet, with a letter icon, where you can see whether you have any messages. It's a bit like email. Only that recipient can read the message.
Glad to hear it will right itself, Ari, but you can't help worrying. No parent wants an open-ended medical diagnosis where things need monitoring. You just want it sorted once and for all.
So when is what happening with your treatment, *Ari8?

Oh whoops, sorry village I gave you duff information. You click on "Message poster" to send a private message, not "Add Message". Just goes to show I really shouldn't post after a day worrying about medical problems!!! Sorry

Well, it will right itself brown, IF it doesn't damage her kidneys or bowels .. which happens apparently in 50% of cases! :( So we now have to monitor her like a hawk to watch for any signs of extra problems, and she has to attend numerous GP/clinic appointments so they can monitor things too. I am worried sick, I don't mind admitting. :(

With my treatment ... well now I'm in a quandry. Do I go ahead with a cycle in November, with all this with my DD hanging over my head, or wait until next year when hopefully it should have cleared up, I just don't know. I don't want to wait, I'm not getting any younger - 46 in January! - but on the other hand this is going to be a lot of stress and a lot of medical to-ing and fro-ing. Not to mention I will have to go to Greece for at least a couple of days, and I had planned to take DD with me - but can I do this, if there's a worry over her health - what if something happens while we're out there? I just don't know what to do for the best.

Well, you'd be covered by a European Health Insurance Card which includes Greece, and that includes pre-existing medical conditions, plus your own travel insurance of course. That doesn't stop it all being a major hassle and anxiety.
On the other hand, if you're using donor eggs, your age is not so important as if you were using your own from the point of view of conceiving successfully. That's the limiting factor usually. But of course it matters that you'll be an even older mother as far as the pregnancy is concerned and then an even older mother of the child born.
Your decision of course but on balance I think I'd go for it asap, maybe not taking DD. What are her symptoms and what led to her diagnosis?

Thanks ari and brownstag for the PM tutorial, all makes sense now!

Luna I'd love the list of info needed for Mr S if you could send it - thank you!

ari treatment in November sounds like a lot of stress to be going through when you're already worrying about DD. Would waiting a couple of months make much of a difference? By the new year things could be resolving themselves, or you might have worked out a coping strategy and be feeling in a better frame of mind? Tough decision to make and I really feel for you x

Right, sitting here waiting to see how my 'phantom' cycles are going to behave this month and if AF is finally going to arrive tomorrow, or if I'll just have the excruciating cyclical pains without any bleeding which I've had for the last two months. If there's nowt again this time then I'll seriously suspect I have scarring thanks to my July ERPC, which is stopping things from coming out. Lovely.

Ari you have a serious amount of pressure on your shoulders. Have you spoken to your OH to share some of the decision making burden? I agree with Brown regarding starting sooner rather than later, but that should only be with the right support in place to enable you to concentrate on the next cycle etc and not have to constantly worry about your DD (which would be understandable but just add extra pressure)

Thanks ladies - the stress of it isn't what's worrying me, to be honest, it's either taking her with me and then panicking about if she develops symptoms of kidney problems in the couple of days we're out there - I certainly don't want to be trying to explain what she has to Greek doctors, as it's relatively rare! - or the worry of leaving her at home for a couple of days (which she absolutely doesn't want me to do anyway, she won't be apart from me for more than a few hours) and leaving OH in charge. He's great, but he's not me, if you know what I mean?!

luna Ah if only I could share this with OH - but since he almost certainly doesn't want us to do another IVF cycle anyway, he would definitely say we don't do a cycle in November. Or ever, I suspect, if he had his way. So it's no good asking him!

brown She has had a bad tummy ache constantly for a week, which is unlike her, and also started developing red spots on her bottom and legs which don't blanch - both classic symptoms of this syndrome apparently. After a few more spots appeared on her bottom and started showing up on her legs I took her to the doc tomorrow, and we were told to go straight to paediatric A&E, where after testing (and being poked and prodded by 4 different medical staff!) they confirmed what she has.

Sorry, I know this is deviating hugely from the purpose of the thread!

village I have to say, I ended up with quite bad scarring after having had two ERPCs, as discovered by my hysto in Athens in April this year. Apparently it's very common, and can affect your AF and how it presents. Can you get this checked out?

Of course I didn't take her to the doc tomorrow, god knows why I typed that! I don't have a Tardis at my disposal, only wish I did! :) I took her to the doc yesterday ... doh!

Ari thanks for your concern even in the middle of all your own problems. My womb looked a-ok in recent scans since the ERPC but I'm worried there may be a slight lesion or two blocking the cervix which wouldn't show up on ultrasound - Louise said they'd do a saline scan for me if AF doesn't arrive now.

luna thanks so much again for the list!

village I sent you my mammoth list of supplements, hope it doesn't send you to sleep :)

Ari I think you have to put DD first and wait to go back to Athens. As someone else said it's not like there is so much of a time limit with using donor eggs. The stress of it all wouldnt be good for you to try and get pregnant now anyway.

Yes sue, that's what I've decided. I emailed Penny to let her know what's happened - she said I could go over for just the ET without the aquascan/scratch so I could fly there and back in a day as I did last time, if I wanted to, but her opinion was that I should concentrate on DD and we'll sort out what to do IVF-wise when DD is better. Which is what I'd decided too. I'd never forgive myself if she needed me and I was over in Athens, even just for the day.

So I shall lurk for the next few months, and cheer on all your good news!

Ari thanks so much for the list! I'm interested to see that you take methylfolate - I'm heterozygous for MTHFRC677T but the specialist I saw last month said this wasn't significant. Wonder if Mr S will think it's relevant. Glad you've arrived at a decision about the next few months that you're comfortable with, sounds like the right one! x

sue hope you're doing well

I'm having sensational AF-without-any-bleeding pains again today. Hard not to believe that I have a cervical blockage . Everything about this last cycle has again presented normally - positive OPK mid-month followed by ovulation twinges on day 15, two-week luteal phase, pre-period hormonal headache yesterday, cramping today... but no blood. This is the THIRD cycle on the trot now in which I've had this. I'm really hacked off with my GP and the specialist I saw last month, both of whom dismissed the possibility of scarring. Louise is the only person so far who has suggested that a saline scan might be necessary to check for this. Roll on Mr S appointment next week .

Hi everyone

i just wanted to say thank you all for your support, ive had a few days away to get my head straight..
DH and i have sorted things out I'm pleased to say..

Well after all the stress and worry and about to start the supper ovulation treatment this month i got a BFP today..

I cant believe it since i tested negative and have been spotting.. DH wanted me to test today.. (good job i did otherwise id be forking out on meds i dont need)

Im in utter shock..
Im going for my intralipids on monday and have started all other meds too.. so here we go taking one day at a time..

village I hate to say this but worrying about scarring I had a hysto under Mr S (wasn't him that actually did the op) and they said there was no scarring at all. Then when I had another hysto in Athens this April they found lots .. and having seen the DVD of the op (yuck!) I got to see it all for myself (and saw it being cut out - really yuck!). I have since found out that clinics here in the UK frequently miss this scarring ..

team Cautious woohoo for your BFP, and fingers crossed it all goes well!

Oh and village Mr S doesn't believe methylfolate is necessary for MTHFR but then blood clotting disorders aren't his area of speciality, to be fair. He thinks that all is needed to treat MTHFR is aspirin and folic acid.

Quick Q for pebbles (if she is here?) and breezy do you know how much you spent on your ivf rounds you've just has at new life clinic and the lister? Sorry if you don't want to discuss... Just wondering

teamdozie congratulations! Everything crossed for you.

Ari sorry to hear about your DD, must be v worried. I hope you are all feeling well looked after in the midst of it.

Village I'm ok, thanks for asking. Massive insomnia from the pred (hence up at 4.30) and understandably anxious, but trying to be zen about what I can't change. Scan on Tuesday...
Phantom AF sounds rubbish - hope Mr S can shed some light.

team congrats, I'm really pleased for you :)

Waves to everyone else, will try and catch up soon