TTC or pregnancy on prednisolone or similar part 10

[roseandroli]

We are now on part 10 of this thread! I hope you can all find this. 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!

Links to earlier threads:

Part 9: www.mumsnet.com/Talk/conception/a1552980-TTC-or-pregnancy-on-prednisolone-or-similar-part-9

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

Thanks duggs

ah so that's what fsh is then! in that case I think ive had it done.
coney I fully believe in Mr s for the moment at least, it just worrys me some of the stories here when he's been unhelpful and closed minded.
like you I hadn't got passed 6 wks (mmc's) until I saw him. my last one was 12 and a half weeks on his treatment, I mc because of a chromosome issue. so not his fault and no one could have fixed that. which is why I have faith in his treatment plan. I know I shouldnt really be thinking about mcing again but I can't help it! I wonder how many times to try with Mr s before accepting that its not working. as you can tell I'm still paranoid about this pregnancy! but I will be now until I get to around 20wks I won't be happy.

I'm under no illusions about Mr S, I can see that side to him. Although I experienced arrogance and inability to think outside the standard protocol on the NHS too! Though I guess NHS cons are more limited in treatment choices.

Hopefully this one will work for you and you won't need to think about it. But I think the consensus, just from reading this thread is that if the NK cells treatment doesn't work for you quite quickly, you're better off cutting your losses and trying someone with a less limited focus.

I totally understand your paranoia, I'm there every day! Just have to take each day as it comes, take the meds, be as healthy as possible. We can't do any more than that can we? Fingers crossed x

thanks coney you too. I find this thread so helpful. one day at a time, we're doing our best!

Hi all, so glad to hear of all the new pregnancies! Hope everyone is doing well. I'm back doing quite a bit of work at the moment so no time to lurk as much as I would like. Will be watching to see how everyone goes though. Good luck to all whatever stage you're at.

cartoon I'm sorry if my comments upset you about Mr S I believe he is knowledgeable about NK cells but he most certainly has no right to pass comment or opinion on my choice of treatment. I believe in his treatment which is why I am sticking with him, hoping all goes well for you with th erest of your pregnancy

Buzzy don't want to speak for cartoon, but think coney summed it up well. He's great for immune nk issues but not so much for anything outside of this field and that's apparent. Also there are other doctors that people on here report back about, free market and all that, so only a good thing. more choice . . = more availability & ultimately better pricing! Keep it all coming ladies, info. is key. Pred from BFP seems to work for more and more where it most def affects conception - we need some immune response to implant in first place. Understandable why after 6,7,or in some cases 17 cycles stopping pred is a must as immune system must be flat as a pan. This is the sort of info we need to share bc too many people have been successful after stopping pred altogether. And some like lemon and euro stopped treatment altogether and had successful pregnancies. Perhaps highlights why the area isn't mainstream bc studies and trials isn't consistent enough to create a firm pattern. There will always be the unknown what if element. Wonder where things will sit in 20 years time?

buzzy no of course you didnt upset me! I've been thinking things over for a little while, what I'd do next etc. at times I've been shocked by some of the stories on here as I've never experienced this attitude from him (yet) and certainly the things he's said to some of you ladies are just plain out of order. god knows what he'll say to me when I see him, for getting pregnant by accident with only one cycle in between! but at least I'm prepared to be told off.

That's so interesting Duggs I wonder if Pred is affecting my fertility? I can normally get pregnant very easily (I know that's not necessarily a good thing) but no pregnancy as yet for me. I absolutely hate the Prednisolone and want to take it for as little time as possible so this isn't working out great for me.
I can find research on high level Pred affecting FSH and LH levels which prevent ovulation, in this case what does Mr Shehata offer? Super ovulation?

Yes super ovulation was offered to a few of us about 18 mths ago (actually my 2nd cycle) he couldn't wait to get us on it as is another £210 per mth just for mid ov scan. Doing research on protocols for pred varies but intrallipids and Humira if relevant seem to have worked for some but dr s didn't believe in Humira back then but he seems to have changed his mind. Like I said I'm back for the gonal f drugs only. Told him I had NHS IVF (aware I'm lucky to get it) at hammer smith and he told me they were rubbish and I would most likely fail and why not come to new life. I did then point out it was NHS and free therefore I couldn't select ( didn't say even if I could I wouldn't be giving him any more of my £ as he's had more than enough already ) oh well I've been in this game long enough to let it roll off my back but still. Louise looked a bit uncomfortable tbh and she is always more than lovely in my experience. Do think about pred break for a couple of cycles as it has made all difference for a good few on here. Hydroxychloride is also something to consider has he mentioned that?

I tried the Hydroxy and it made me really ill. I can put up with side effects but not that much. I think a Pred break would be a good idea, my DH and were already talking about it as I need to give my body a break anyway. Sounds like super ovulation isn't an option for me. I just can't justify flying to London every month. So frustrating!

It does feel like starting one intervention precipitates another Duggs. I've been chatting it though with my DH and I think we've agreed one month on Pred and TTC and then one month off and not TTC would work best for us.
Best of luck Duggs

Have you had the humira test?

I don't think so, what is it for?

I went to see Shehata privately as I was not getting on with the Pred every month, I do think from a BFP is better, the only reason I took it from EC was because this is my last chance so thought I should cover all bases. I think Prof Q does it from a BFP anyway, like you say duggs the more info the better,

He does sound like he is getting rather money grabbing, I appreciate that it is a business for him but its our dreams of motherhood too. He has lost alot of weight since I last saw him too.

duggs I have heard good things about Hammersmith

accidental sorry the hydroxy makes you feel ill, side affects are a nightmare

Humira drug is a response to a particularly specific test but I am not the best person to update u as wasn't an issue for me dr Gorgy tested me last summer. But if no one responds on here then pm me and I will direct you to our other thread pebbles and choccy etc have have Humira!

I've been on h

As I was saying... I've had humira- 2 lots of it after being diagnosed with high tnf alpha. First 2 injections brought level down but not enough and mr s doesn't bother retesting after the next 2 as I can't have any more. It's supposed to help you concieve but help your nk cells too. It stays in system 6-9 months. It helped me as after a year of superovulation I was pregnant a month later but sadly just mc but will try again x

Does anyone know the cheapest place to get the LAD/DQA test done? Was hoping to get it done at serum on Wednesday but hubby is away early hours mon so he won't be able to get blood taken x

Thanks for the info.
Does Mr S routinely test for high TNT alpha Mel?

I'm debating about just taking Pred from BFP. I would rather that than have so much Pred in my system month after month unnecessarily.

I think he maybe does now though had been on super ovulation a year, I think it's a new thing he's trying! X I know what you mean about the pred, funny that I got pregnant when I was 3 months off it!

There is research showing that Pred reduces your LH and FSH levels. Your system probably got back to normal allowing you to ovulate again.

The pred def affects my cycle, even stopping me from ovulate at its worst. I have to go on to the super ovulation plan because of it eben though I was only taking for 10 days each cycle. They are such awful drugs, I hate being on them!! Its been lovely not taking them for a few months as have shifted nearly a stone in weight and my moonface has gone. I also got pregnant last year after being off it for 3 months. This month is the first cycle that is almost back to normal and I have been off it for 3 months again - can't be a co-incidence??

In the Zita West book, she says that preds taken in high doses affect the pituitary gland that can inhibit the hormone necessary for ovulation! I think this does happen with some of Mr S's patients myself included.

I've given up on Pred too. I've been on it, on and off, since August 2011 - with breaks after mc's obv. I've never noticed any problems ovulating until after my most recent mc last December. That was a really bad, long drawn out mc anyway, plus I got norovirus at the same time so was completely knocked sideways. I don't seem to be ovulating every month, eg did last month but on cd9; this month it's cd15 today and still no positive ov test. And cycles have been 27,24,23 days when I'm normally bang on 28.

I've decided to take Pred if I get a BFP. I'm not putting my body through it when I can't even be sure I've ov'd. It seems to be counterproductive. And if you're not oving you can't get pg in the first place.

I also don't fancy SO as surely that's just more drugs to counteract the effect of other drugs?! And more money. I've always got pg month one or two of ttc. This is month four and no sign... And it ain't for want of trying I can tell you!!

I think this is a problem for long timers. Those who get pg very quickly after starting treatment, and whose pg's are successful and don't have several more mc's, are ok. It's prolonged use, as many of us have, that seems to lead to problems.

Exactly sue and choccy. One of the other side effects is hypothyroidism if you are in danger of being suceptible to it. My TSH is too high for fertility ( not that dr s was bothered) but I'm taking advice of NHS on this one. It is what we've been saying for a while - 2 camps take pred get pregnant quickly ok. If not then keeping on with same or tweaked treatment programme and you seem to be heading for a whole heap of other issues. This is not really responsible medicine bc we r have been saying so on here for a while so how many others are being affected without realising in good faith. Pred from bfp or not at all seems to be the safest way for long timers. Even kittens had luck after coming off pred and she was the longest timer! Bumping sues question about intrallipids as I want to follow her lead if possible!