TTC or pregnancy on prednisolone or similar part 11

(1000 Posts)
Buzzybee123 Mon 19-Aug-13 22:25:50

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!

TheAccidentalExhibitionist Mon 19-Aug-13 23:54:45

Hi Buzzy I like the new thread smile
Thanks for setting it up.

there you are.
hi buzzy and accidental. smile

freelancegirl Tue 20-Aug-13 12:02:48

Thanks *Buzzy! Well done.

Carrying on from the last thread Accidental that's pretty shit. Yes Ive heard about the connection with Lupus. I have thyroid disease and was diagnosed at 21 but I wouldn't be surprised if there is more in the family. I think we are far more progressive in the UK in terms of age and pregnancy. Even years ago plenty of women were still having babies in their 40s, it's just a big thing wasn't made of it. It's shit though, when someone points it out as, I don't know about you but at 39 I feel very young still!

Mollie a big virtual hug for you.

Mel3062 Tue 20-Aug-13 12:25:05

Thanks buzzy.
I'm feeling abit rubbish today I think it's after effects of the uterine biopsy?

Tumtimes1 Tue 20-Aug-13 13:17:12

Hey hey! Found you all. xxx

Tumtimes1 Tue 20-Aug-13 13:32:09

Hugs to Molly - mate I'm thinking of you. x

Accidental, that must be annoying to be told you should "expect" this at 40. I see why you're heading in with Dr S.

Me too. Even though I went for a consultation with Dr Gorgy after seeing shehata, we realised we couldn't afford all of Gorgy's further tests. Therefore we are going with Shehata and hoping that the prednisolone, the progesterone, baby asprin, high dose folic acid, vitamin D and omega 3 oil prescribed will be just enough to sustain a pregnancy that doesn't end in miscarriage.

I am on CD1 today (FINALLY) so feeling optimistic about the month ahead. I have my Clear Blue Fertility Monitor all reset (surprised batteries still work in it to be fair) and am ready to go. I have an appointment to see Shehata on 9th Sept to get a load more pred as will have run out by then too.

My personal concern on all of this is, that whenever I have gotten pregnant before I have AWFUL migraines with aura. These can last up to 12 hours and feel like a stroke as effect my speech and vision and end in vomiting. These get 10 times worse when pregnant and I can't help thinking (after reading up on this) that docs should be looking into this and thinking this may be something to do with the miscarriages. Should I be on a blood thinner for example?

I have a long awaited neurology appointment at my NHS hospital in 2 weeks and I will be very interested to see what they say on this.

Aaaanyway, sending everyone my love xxxx

tums will the asprin not thin your blood. maybe some clexane would help. I'm just guessingwink I really have no idea. have you mentioned it to Mr s?
accidental I hope you get along better with Mr s. sounds complete rubbish to me what the other doc said.
hugs to mollie I'm glad your getting support from ladies on this thread as well as in the real world.

mollieboo Tue 20-Aug-13 16:32:20

Thanks Buzzy, hi all.

Tum I was thinking of seeing Dr Gorgy, but can't really afford it! I wonder what he would do differently if anything. Tum do you know if his treatment would differ? I rang a local ivf clinic today where I was having intralipids. I spoke to one of the doctors who has an interest in recurrent miscarriage and there didn't seem much else to change apart from using ivig which I won't do as its so expensive and there's no proof it's more effective than intralipids according to the doc. Seriously wondering if we can afford to remortgage house to try using surrogacy instead.

Tumtimes1 Tue 20-Aug-13 16:49:29

Hi Mollie xx Well when I went to Dr Gorgy the tests that he offered in comparison to Shehata were much more detailed and also seemed to be in addition. So I would say it would be worth a consultation at the very least which was about £170 I think?
xxx

mollieboo Tue 20-Aug-13 17:03:08

Thanks for the info tum. Hmm decisions, I guess I need to explore every avenue before trying again, if I ever can. Your migraines sound awful when pregnant, you would think these things should be addressed xx

Thanks again all for support x

duggs1976 Wed 21-Aug-13 08:10:53

I guess the main difference for me was that dr Gorgy also looks at hidden infections, sperm DNA fragmentation and more detail at the immune factors. He also looks at the compatibility issues between both partners. if you can only afford dr s then hopefully his towline pred will do the trick... Otherwise i prefer dr G because I am biased as he picked up the hidden infections and sperm DNA fragmentation 2 yrs later which dr s still doesn't acknowledge despite this not being a controversial area, just the USA is further ahead so samples get sent to Chicago. I am not sure those things are a factor for you guys? Humira is what he's been using for a while, dr S has actually caught up on that one this year it seems, so I would see how you go with him. Failing that I am a huge advocate of traditional Chinese medicine and looking into your immune issues at same time to try to get a more natural harmonised body overall which can only help the conception environment. Best of luck.

Mel3062 Wed 21-Aug-13 08:51:59

I agree with duggs, if you can afford to see him it may be worth exploring other "open" opinions.
I'm def going to persuade oh to get bloods done with him as I feel I have to explore what I can.
Good luck x

Tumtimes1 Wed 21-Aug-13 09:14:55

I agree, if this doesn't work with shehata, we're getting a loan and going to Gorgy to get the tests Duggs outlines above xx

mollieboo Wed 21-Aug-13 09:50:53

Thanks Duggs, very helpful. I wonder would Dr G's theory would be about 20 week loss. I would need a loan, we're at a crossroads now thinking do we go for more tests and try again or go down the surrogacy or adoption route.

duggs1976 Wed 21-Aug-13 17:52:26

Mollie - you are still waiting for test results back aren't you? It may well be that there was a chromosomal abnormality? I had trisomy 13 with a baby girl 2 yrs ago patu syndrome which can go to live birth - but is very disabled and on average babies only live a year. Apologies if I am stating something very obvious and that you've already mentioned (I don't recall you have but I may be mistaken). If it is something like that or sues situation with Scarlett then it might not be related to anything that could happen again?
But the Uncertainty is the most difficult to swallow, because no one will ever know for sure as there seems to be no rhyme or reason or sharing out of suffering. I think you might be surprised by these doctors insistence that you try again and do everything you did once again.

mollieboo Wed 21-Aug-13 18:13:12

Duggs you are very right, it may well be that something will be found, I'm looking too far ahead as usual. The consultant thinks its highly unlikely that it will be chromosomal as there were no markers and the baby looked normal. So I feel that I'm waiting 3 months just to be told they don't know what happened. I hope I'm proved wrong though. I am finding that doctors are keen for us to try again as its highly unlikely to happen again, but of course it's easy for them to say that, the risks feel huge for us after so much heartbreak. Where are you at the moment in this crazy game duggs?

duggs1976 Wed 21-Aug-13 19:19:21

It's a long time to wait. You seem amazingly strong mollie. I hope real life people realise just want an amazing person you are. Your strength is astounding. As for me- I'm supposedly 7 wks pregnant but after a 6 wk scan at st Mary's last week which was on for dates but just gestational and yolk sac seen (which I'm told is pretty normal ) I couldn't face going back this morning. So just ticking along with head in sand until I bleed or get forced to have a scan which shows a missed miscarriage. Either way I wish time would pass as most of the pregnant folk do and the others wish time would allow them to get going again. Huge hugs mollie you really are an inspirational woman. X

mollieboo Thu 22-Aug-13 12:08:36

Hi duggs, really hope this one is the one for you. I really admire the way you can hold out and wait. Thank you for the kind words. People in work tell me I'm strong, I wish I didn't have to be though! I'm in tears every day at the moment and I wonder why I have to go through this hell. But the only thing that keeps me going is the thought of getting my family one day. I think we're all strong on here though! X

Tumtimes1 Thu 22-Aug-13 14:10:34

Hi Duggs, are you booked in for reassurance scans weekly at St Mary's? xx

Tumtimes1 Thu 22-Aug-13 14:21:29

Mollieboo do you know how long it might take to get the results, is it 3 months as you mention above?? xx Thinking of you everyday x

duggs1976 Thu 22-Aug-13 19:19:44

Oh mollie. X
Tums yes I was but didn't have a great experience last week at 6 weeks, they were a bit doom and gloom because there was only a gestational sac and yolk sac, so have decided to opt out and see if I can just try to forget about it all until 9wks. If I mc before then do be it. At least at 9 wks if there is no hb then it will be pretty conclusive. I don't feel brave, just hiding really, trying to avoid what I don't want to hear.
Hope others are fine.

mollieboo Thu 22-Aug-13 21:59:43

Thanks tum, yes 3 months, such an agonising wait.

Waves to all x

Tumtimes1 Fri 23-Aug-13 10:40:59

Hiya Duggs. Its very normal to have that at a six week scan isn't it though. I can fully understand why you are doing an "ostrich" though, its so hard to keep going through this.
Actually Duggs, I tried to PM you to get your back story as I can't find it on here, for some reason my message thing doesn't work :-(.
Me and my OH keep saying its just a "process" and we have to go through the "process" to get to the end result.

Mollie sorry but why is it taking 3 months? How agonising for you! Is this because tests have to be so extensive to get all the info? xxx

ChoccyPud Fri 23-Aug-13 11:03:02

Hi all!

Mollie I can't believe you have to wait 3 months that's agonising. Thinking of you.

Duggs you do whatever feels right for you.

All's well with me just haven't had a chance to update. Had scans with Mr S and at FMC on Tuesday and measuring either 10.3 or about 11 depending on whose measurements you take. Was actually 10.1 so definitely ahead! Baby looks fine so far all as it should be. Had the Harmony blood test and going back to FMC in a couple of weeks for 12 week scan and Nuchal test and results of Harmony.

It is so so weird to "only" be worrying about chromosomal problems like "normal" people having finally got through the NKCs danger period. As long serving members of this thread will know I've been used to posting one lot of bad news after another over the last two years and sometimes felt like I'd never even see a hb. This is pg no8 btw... It's seeing good news on here that's helped keep me going and I hope that my good news (so far - always gotta caveat!) helps others stay hopeful too.

Of course as we know all too well from Sue and Mollie its not certain even after you're through the magic 12 weeks. I'm just trying not to worry TOO much, and remember that there's nothing I can do about it if there is a trisomy. And be comforted that I'm still feeling sick and tired in the afternoons and evenings despite the Pred!

Waves to all smile

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