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

[mollieboo]

List updated, no worries. Will just be on my phone next few days now and can't update from there sorry but today I was on a laptop so was no problem to update. Free will be pleased if she sees the list updated!!

cartoon the plan going forward for me is when I get pregnant to go onto 40mg of pred instead of 25mg per day, and possibly take two Hydroxy per day instead of one. I've only got high NKC but am to go on pred, Clexane, Hydroxy and intralipids to 32 weeks. Which is all fine, whatever it takes as long as it works, just please work next time.

bellyd good luck with the ivf and treatment plan, its great to have a plan in place and an understanding doctor. Its hard waiting but I'm sure May will come really quickly.

[freelancegirl]

Marking place and so pleased youre all carrying on and with a list update too! Sorry about scan stress clabbage, I hope this one has a better outcome for you.

Great to hear of your BFP lawlee! And the other good scans too,

Who asked about the hydroxy? I was on it / only the second person I think. Was also on the Pred - 40mg.

Hope everyone is doing ok xx

[freelancegirl]

Wow look at all the third trimesters!

[Lawlee]

Thanks for adding me to the list mollie

Thanks Free fingers crossed it sticks! Hope your little one is good too
Night all x

[Havingkittens]

Clabbage, I'm sorry to hear you're going through the same horrible experience again. I know how that feels, I had that happen 3 times in the last year of TTC before seeing Mr S. I hope this one turns out to be your miracle.

Mollie, thanks for updating the list, although you've put me a week ahead. I'm 32+1 now, so 8 weeks to go. I had a scan last week and the baby was breech so I'm hoping it will have turned by the time I have my next scan in another week!

Accidental, I was on both Hydroxy and Pred so can't answer your question but there was someone on here that was just on intralipids and not pred and they had a successful pregnancy, so perhaps that approach will work for you. If you can get Louise's number (I've not got it handy) it may be worth giving her a call. She really takes time to listen to your concerns and explains stuff in a very reassuring way. She's talked me down off the ceiling many a time!

Lawlee, I started off seeing Mr S on the NHS. I don't know if things have changed but it used to be possible to ask to be referred to a hospital out of your area if there was a particular reason. I live in North London and I still got to see him at St Helier. I did go on to see him privately in the end as I was also having fertility issues and he doesn't cover that at St Helier and the NHS don't give fertility treatment to people as old as me! I did continue to get my prescriptions made out at St Helier though as I was in their system. They are fine about you seeing him both on the NHS and privately. You could call Cheryl at his private practice and have a chat with her about having Intralipids privately alongside your NHS treatment. Good luck with testing. All sounds promising to me! I wouldn't worry about the vigorous trans-vaginal scan. They can be pretty vigorous when looking around at an early scan when things are very small and they don't seem concerned whilst doing it so I'm sure there's no risk.

The only person I know of that have had their baby delivered by Mr S was Free. I'm not sure whether that was privately or at St Helier, as I seem to remember a conversation on here about the fact that she was in the catchment area to give birth at St Helier. I'm not considering it. I'm planning to give birth at UCH who have given me excellent care since I left the charge of Mr S at 16 weeks.

Sorry about not writing more personals, it's been busy on here and I can't quite keep up!

Always thinking of Sue, Ari, Choccy, Scooter, Duggs, Pebbles et al. Hope you're all doing OK and that this year your luck will change. xx

[freelancegirl]

I also managed to see mr s on the nhs at st helier but by that time I'd already got impatient and booked to see him privately. I just wanted to get tested for nkc as soon as possible, after finding out about them on these threads.

DS was lifted out by Mr S himself at Epsom General, back to the nhs. There were no issues with this as far as the hospital : my GP goes. Mr S was bemused when I was surprised he actually does births himself, he said just because he wears a suit people think he doesnt get his hands dirty! A euphemism, the latter, of course.

Cheerful Charlie was only on intralipids I think.

[sarahs999]

Thanks so much for updating the list mollie - free will be ecstatic that we're not all list refusers! I am having my c section on Thursday. Am v nervous but excited to meet my baby boy. Suspect I will spend quite a while on a state of disbelief that he's finally here after all we've been through...

Hope everyone else is doing ok. I post more on antenatal now but do watch over this thread to see how everyone is. Good luck all. Will update when the baby is here...

[duggs1976]

Thanks for thinking of us long timers kittens still lurking from time to time.

Being in the 15% where the nk cells treatment made no difference (18 mths on dr s programme is pretty conclusive to me) I luckily saw dr Gorgy last summer and would like to share with some of you.

He found hidden infections ( despite all standard urine etc tests bein normal) and high sperm DNA fragmentation in DH. After a mth of hardcore anti biotics ( and I mean hard core) we both re tested ok. My nk cells were in normal parameters by last June.

A 33% DNA fragmentation level gave a 1% chance of live birth. This was despite all other sperm tests being excellent - 140million count, good motility, even a karyotyping test to check genetics.

Sperm is reproduced every 90 days but I got impatient and asked DH to re test in September -22% it had gone down.
He re tested last month a d was down to 15.1% which is normal. He takes anti oxidants etc and it has taken almost 9 mths to get here but I think we may have had our reason for 3 miscarriages, 2 chemical pregnancies, a failed IUI, failed frozen embryo transfer and 6 failed super ovulation cycles over 42 months of trying.

Here is the link to the test which costs £300.

www.tdlpathology.com/services-divisions/tdl-andrology/sperm-dna-fragmentation

I'm not successfully pregnant as yet and when I do get a bfp again I shall pop some pred and hydroxy just in case as I have a drawer full of them, and makes me feel safer, but I do want to highlight that there may be other reasons if pregnancy isn't happening.

Some of me thinks this is just another false hope journey but 33% to 15% has to be a good thing.

Now I'm just trying to pretend we r on a new journey. I will keep you posted.
Btw a red herring after my cGH chromosonally tested embryos were put back at 3 days - egg is tested here as sper, failure usually happens after 3 days so I'd advise anyone to spend £300 before embarking on any ART that costs thousands.

Good luck to those due to give birth soon.
Still think of you a lot ladies x

[Arianrhod]

Thanks for updating the list mollie, and good to see updates from duggs and kittens. Thinking of sue, choccy, pebbles and scooter, give us a wave if you're still around.

clabbage So sorry you feel you may be facing the same nightmare situation again, and hope that it's not the case this time. Crossing fingers and toes for you.

I'd second duggs about the extra testing. OH had the same DNA fragmentation test done (as well as SA testing) and although his results seem to indicate he has super-sperm, I feel it was absolutely right to be tested and I was a little frustrated it wasn't tested by routine right at the start of the RMC tests with Mr S. Ok so it turns out all the problems are apparently down to me, but they might not have been - if you haven't tested all possibilities then you're only working with half a picture, to my mind. Ditto to the hidden infection testing - we did the same hardcore anti-bs as duggs and although I didn't ever get retested, I'm glad we did the treatment.

Actually that's triggered a thought. duggs you mentioned your NK cells were down to normal levels - was this due to clearing up the hidden infections, do you think? I've only had my NK cells retested after the first MC I had under Mr S, which was 7 months before I did the anti-bs for hidden infections. I wonder if that might have made a difference? Guess I won't know, I'm not about to pay £££ for NK cells to be tested again just in case. I will only take pred (and hydroxy) now from BFP anyway, so I guess it makes no difference. I am very aware that your immune system can be oversuppressed, which in itself can cause failures in implantation (you need a certain amount of inflammatory ability for implantation to happen, apparently), and I just wonder. This is why I would far rather thecause of high NK cells could be determined and sorted out, rather than just treating the symptoms - the high NK cells. If you can eliminate the cause (which I appreciate can't always happen) and bring NK cells down to more normal levels, surely that would be a better approach?

Anyway, I'm not a doctor, and like duggs says I'm not successfully pregnant yet, so it's all speculation as to whether any of this is going to work for me anyway.

/waves to everyone

[Lawlee]

Thanks Kittens good to know that if I need to I can run the two alongside each other. Hope you are doing well, gosh only 8 weeks to go, how exciting! Bet you are really starting to look forwards to having your bubba in your arms! You too Sarah do keep us posted, so pleased to hear of imminent births and new babes, it's uplifting!

Thanks for the info Duggs and Ari it's great to know that there are are other routes out there if this doesn't work. I really hope it's successful for you both, and interesting too because Mr. S definitely said to me they don't test for infections, even though its in their leaflet. Strange and annoying that there are so many conflicting approaches out there. Actually I do wonder, have either of you ever had long-term antibiotics before? I had a course of them when I was younger (probably not as hard-core or targeted as what you've had) for a bit of a bug that wouldn't go away so I sometimes wonder if hidden infections might still be a possibility. Anyway such a shame that this kind of info is not more readily available, which makes this resource so very valuable as well as a place for support! So when are you going to write that book Rose?!

Free always great to hear from you, amazing that your thread has got to part 10!

[Arianrhod]

lawlee Mr S doesn't test for infections - duggs had hers tested via Dr Gorgy, while I had ours done directly with the clinic in Athens. I did inform Mr S at the time I was doing them, and I sent him our results, but he told me when I raised it with him that labs over here believe these tests are not recognised as worth doing, and believes they have no effect on miscarriages/pregnancies. I'd never had long-term anti-bs before and certainly nothing as hard-core as this, but I did suffer from about a year-long recurrent UTI 3 or 4 years ago and wonder if it wasn't related.

[duggs1976]

Yes Ari- frustrating and perhaps slightly arrogant of dr s to dismiss hidden infections and sperm DNA fragmentation out of the picture when there is plenty of evidence and logic that both could be a miscarriage contributor! Anyway - deep sigh - suemays pointed out to me and I'm very glad she did. Yes zita west also mentions this theory ari as your NK cells are usually inflamed for a reason!

[Lawlee]

That is interesting Ari because the antibiotics I had when I was younger were also for recurrent uti! Wonder if there is a link, I'm not convinced they would have got rid of everything. I developed a horrible reaction to those anti-b's in the end, they gave me a nasty rash on my neck that made me look like I had a permanent set of hickys lol! Yet more evidence of my crazy immune system I suppose.
Yes sorry I think my post wasn't worded well, when i said about Mr S. not testing for infections I just meant its weird isn't it how each consultant seems to give conflicting advice and treatment options. I suppose it's just that not enough is known about it all and it's too cutting edge, but it would be nice if there could be a bit more consensus sometimes.
Really really hope it all works out for you both soon, and for all of us!

[cartoontrickster]

mollie that's quite a cocktail! . I really hope it works out for you next time. I guess its kind of trial and error unfortunately with these treatment plans. I fully expected it not work first time for me. but touch wood seems to be so far. when will you start TTC or are you going to have a break?
I wish that miscarriage in general was talked about more as well as what causes it especially some of these newer theorys like the nk cells. I would not have known about any of this had I not joined mn which is a scary thought. I hate to think how much more heartbreak we couldve had if I hadnt had the nk testing.

[TheAccidentalExhibitionist]

I emailed Louise this morning, about not feeling confident on the Hydroxy and that I've developed very sore eyes with light sensitivity and nausea on the Hydroxy. That alone worries me.

Mr S said that he would send a script for Prednisolone but that if I took it, it was my responsibility if I got problems on it.
I guess he doesn't want any come back, I've got a suspected stomach ulcer from taking anti inflammatories for back pain (auto immune related). That didn't worry Mr S the first time I saw him but now he seems sure that Hydroxy alone is the answer for me and that Pred could cause me problems.
He emailed to say he used Hydroxy on a patient who had 20 MC, three of them on Pred and now she's half at through her pregnancy.

Not sure what to do now, I'm not sure my eyes could cope with continuing on the Hydroxy and the Pred could be dangerous. Feckin hell.

[Lawlee]

Accidental so sorry you are having such a tough decision to make. How long have you been taking the hydroxy for? Just a thought but might your eyes acclimatise do you think? First 8 or 9 days on the pred I had terrible insomnia and just felt really weird all the time but (fingers crossed) it seems to be easing up now and I think my system is getting used to it. Hope you find some answers soon. I guess at least you know now there are people who have had success on both treatment plans, whatever you decide to do.

Cartoon I agree, I wish I had known more about miscarriage in general. Even just some basics might have helped cope with it the first time around, I was so unprepared and I think the general shock of it all was almost as bad as anything else. I'm sure they never told us anything about it at school. Thank goodness for MN and this thread, I've learned so much in the past few days that I feel almost like I've become a fertility expert myself lol!

[Delta10]

Hello all
Just letting you all know that our little bundle has arrived! We were due on 18th feb (list slightly out of date for me) but due to very high protein in urine at routine appt on Monday, I was booked in for a c-section on Tuesday 12th (at 39+1). Our beautiful baby girl arrived safe & sound weighing in at 7lb 4oz & 55cm long & just perfect. We didn't know what we were having but are so delighted to have a baby sister for our son, another pred baby, who turns 3 at the end of April. It has taken us 7 years to get here but had we not met mr s in 2009, I am sure we would never have achieved our wonderful family. Good luck to you all & I shall be popping by to see how everyone is getting on & sending good luck & best wishes to everyone on your journey to motherhood xx

[PQ77]

Many congrats Delta, wonderful news xx

[Havingkittens]

Fantastic news Delta, Congratulations!

Well, I never thought I'd get this far, but I'm just off to my antenatal classes now

[Lawlee]

Congratulations Delta that's wonderful news, so exciting! So pleased to hear you are all doing well! After 7 years I'm so glad it has all worked out for you x

Can I please ask a quick question about Cyclogest? Did any of you find it gave you cramps? I've used it for two nights now and both times noticed that within about 5 minutes of lying down I got mild period type pain that eased off after about half an hour. I'm wondering if there is a connection with the cyclogest or if it's just coincidence? Anyone else get that and should I be worried? Still a positive line today although no darker than yesterday, but keep reminding myself that AF not even due till Tues so still too early to be worrying about that! Hope you are all well and have nice weekend ahead of you especially Mollie and your night out with DH!

[Lawlee]

Yay Kittens happy for you

[cartoontrickster]

yes lawlee it gives me cramps. Louise said it does. so don't worry!
lovely to here of babies arriving! congrats.

[freelancegirl]

Delta that brought tears to my eyes, am so bloody happy for you. And kittens and your antenatal classes too! Hope you make some nice 'mummy friends'. Mine have been a lifeline,

[Cheerfulcharlie]

Ah Delta, congratulations! That made me goosebumpy.
Just a quick one from me as DS needs a bath but Accidental I had / have (?) v high NKC and I only had intralipids (no pred or hydroxy) and I had a really great pregnancy. I did only have 2 MCs before that though.

Did Stogan report back and tell us what her results for re-testing of NKCs before TTC again?

kittens - hello! great to read it's all still going well!

[roseandroli]

Congratulations delta--I just love your story, and so so happy that your family is now complete. Warmest felicitations to you!

And to kittens on your antenatal classes. What a milestone.

I'm off to have my nuchal scan on Monday. Eeeks. Has anyone had them done at UCLH (maybe sarah?). Do you know how long they wait before telling you the result of the scan and blood test? I know if I did it privately at the FMC they would give me the result in 2 hours, but we are so broke after all the Shehata visits...

By the way lawlee I absolutely loathe cyclogest. If anything bad is happening to mecramps, spotting, constipation, acneI just blame the pessaries!