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TTC or pregnancy on prednisolone or similar part 11

999 replies

Buzzybee123 · 19/08/2013 22:25

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!

OP posts:
Tumtimes1 · 18/09/2013 11:35

There are some total idiots on there but mostly I am pleased to say are "normals".

"Free" whats the latest with the documentary? Have you had any feedback from broadcasters? xx

freelancegirl · 18/09/2013 11:37

They usually balance each other out - the nut cases and the normals. Is there anyone saying anything about why are we contributing to the over flowing population or thinking it's our right to have child? That's a usual one on these sort is things :)

Yes I've had some developments! But all in the netting stage.

Tumtimes1 · 18/09/2013 14:06

Whoop! So exciting! x

brownstag · 18/09/2013 19:53

I went round to my grandparents-in-law for a meal last night and read their Times. Brilliant, Free. My grandad-in-law found me the paper, and asked which article I wanted to read. I told him, and he said, 'Oh, I definitely won't be reading that.' And then proceeded to sing a made-up song about babies 'going down the toilet' and laughing away to himself, very pleased with his composition. Having obviously forgotten that only a few months ago his own great-grandchild 'went down the toilet'! Maybe he didn't actually know; the women in the family all did. I inwardly seethed throughout the meal, but didn't say anything, because I wouldn't wish to inflict on him the horror of the realisation of what he's said. He's in his eighties, not senile, but getting a bit vacant on occasions.

teamdozie · 18/09/2013 19:56

Hi everyone..

How are you all? Not been on here for a while.. What have i missed?

Been struggling recently as nothing has happened with me and im getting a bit despondent..

Free i missed the article so i will have to subscribe to the times.. Im looking forward to reading it..

x

freelancegirl · 18/09/2013 21:44

OMG Brown! That's awful. What did DH say? Oh I've just seen he's a grandad rather than FIL. Still a bit crap though!

I am guessing I might have to subscribe too Dozie just to check it out online. Getting some great feedback from it.

freelancegirl · 18/09/2013 21:55

Someone posted this online somewhere.

sameoldIggi · 18/09/2013 22:53

Free Sad
Well done

sameoldIggi · 18/09/2013 22:54

Sorry, meaning that reading it made me sad, despite knowing your experiences it is different written down that way? And well done for getting it out there.

LunaGL · 19/09/2013 09:19

Hi all

Am new to all this but felt inspired to join after reading an amazing article in The Times by Lisa Nand on Tuesday. It was like she was describing my life.

I am just going through my 7th miscarriage and have never made it past 8 weeks. Like most of you I feel that I have had every test and scan known to man and in Dec last year went to see Prof Quenby after learning about NK Cells. Felt I was clutching at straws but there really wasn't anything else to test.

I have 15.8% of uNK Cells but am unsure if that is classed as high or exceptionally high. Either way I started to follow the Professor's recommended treatment programme of Progesterone pessaries together with 40mg Prednisoline whilst also taking Pregnacare Plus omega 3. Am also meant to include Heparin but I have Von Willebrands disease (a form of haemophilia so that treatment is still not confirmed). Have tried Aspirin but lost twice on that.

Anyway even with all the new stuff knocking around in my system, I've had no joy as I miscarried at 6 weeks again.

Following the article I now have an appointment with Mr Shehata to see if there is an alternative combo of meds that he can recommend, I'm not sure who Dr Gorgy is that quite a few of you have mentioned and any advice that you can give me would be VERY appreciated.

Is it wrong to feel relief that I have found this thread and see that I am not on my own??

LunaGL · 19/09/2013 09:25

Whoops you can so tell that I'm new to this - I didn't read to the end of the threads and have just realised that Free wrote the article - doh sorry!!

Anyway looking forward to learning lots from you all.

sameoldIggi · 19/09/2013 09:58

Welcome, Luna, sorry you find yourself here but you have definitely come to the right place.
If it's any help, my 4th mc was on treatment similar to yours, my 5th pg then resulted in ds2.

LunaGL · 19/09/2013 10:06

Thanks Same

Prof Quenby did say to give it three goes but its such a huge emotional and physical "trial and error" thing to go through. Its the uncertainty of not knowing what will work and wondering if there's anything better 'out there'. Hence me now going to see Mr Shehata

Bakingtins · 19/09/2013 10:34

Hi Luna I'm a patient of Prof Q as well, my NK cells were 16.33% and she said that was high, if they were >20% then she'd be more gloomy about my chances. I'm just about to embark on first go with her treatment. I'm sorry to hear it didn't work out for you Sad
It's easy for them to say give it x number of tries, it's not so easy when it's you going through it. This is our final try where have I heard that before? though I already have 2 children so maybe it's easier for me to admit defeat. We don't have the money, the time or the emotional strength to keep seeking another treatment, another doctor, though obviously everyone has their own limits. For us it's Prof Q or nothing.
I think free had it exactly right in that article when she said it is almost impossible to finally draw that line, because there is always the chance that the next pregnancy will be the successful one. I feel like I'm so miserable about losing 4 babies that losing 5 wouldn't make that much difference in the long term.... will I feel the same if it's potentially six.. or seven..? I think DH will put his foot down and say we have to let it go.

Arianrhod · 19/09/2013 10:58

luna Welcome to the thread, and so sorry that you find yourself here. Mr Shehata's protocol is virtually the same by the sounds of it - 25mg pred from ovulation rising to 40mg pred on BFP, intralipids & cyclogest on BFP, and baby aspirin - except that for some people he also prescribes hydroxychloroquine. Dr Gorgy however tests for a much wider range of issues than Mr Shehata, and has a different protocol depending on the results.

If you are one of those lucky enough that Mr Shehata's protocol works for you, as have been so many lovely ladies on this thread (and some no longer with us on the thread), then it works out wonderfully. We've had many successes here on the Pred thread (that free started). However do bear in mind that there are things that Mr S doesn't test for (that Dr Gorgy does) - but of course extra testing costs extra ££. Hopefully you are one of those that Mr Shehata's protocol works for, it does for many ladies.

LunaGL · 19/09/2013 11:12

Baking I'm completely with you on where to draw the line. DH and I haven't managed to start a family yet and as he's already 40 and I'm fast approaching it, I feel under huge pressure to find a solution that works (if anything like that exists).

Arian thank you for the info. My DH and I have been saving our whole lives for a 'baby fund' as we knew we'd have no financial support when the time came to buy things and go on maternity leave. Seems a bit stupid to keep holding onto this small pot of money when we haven't managed to have a baby so this is what is going to pay for treatment. Problem is that it'll probably cover very little but it's all we have so I will look into Dr Gorgy as well. Maybe I can be tested by both for a clear picture of all my "issues" and then build a treatment programme from that.

It's so easy to go mad with what to do for the best.

Arianrhod · 19/09/2013 11:16

luna I know what you mean, it's so hard to know when to say 'enough testing'. Bear in mind that Dr Gorgy does all the testing that Mr S does, he just does more as well (for example, 'hidden' infection testing, DQ alpha matching, and a bunch of others that people like duggs would be able to tell you about), so probably not worth getting tested for the full range of tests that both do, as you'd be duplicating tests.

Arianrhod · 19/09/2013 11:17

luna I meant to say, do you have private medical cover at all? If you do, check your terms, you may find that you're covered for some (if not all) testing for recurrent miscarriage. Quite a few of them will not cover pregnancy, but they will cover miscarriage testing. Just a thought.

LunaGL · 19/09/2013 11:52

Arian you are a genius and I am sending you a HUGE virtual hug Grin

I have Bupa cover through work and although they have covered some of the investigation tests that I have had done in the past, I didn't think that they'd cover me for anything I had via a private clinic. Must engage brain more Hmm

Just called them and they will cover the initial consultation and follow up!! That's going to save us a lot which is great. They will also cover the NK Cell test if it is done via a blood test but won't cover biopsies so I will have to check. Either way though I need the test so there's no discussion to be had.

I will keep Dr Gorgy on standby as Bupa don't work with him at the moment so that's the deciding factor for now. If DH and I decide to have the extra tests then that's what we'll do. Just have to wait for my appointment now, but feeling positive about actually doing something and being proactive.

Thank you Thanks

Arianrhod · 19/09/2013 12:02

Ah wait, I have more news for you though - they don't work with Dr Gorgy, but they DO work with his colleague Dr Eskander, you can work it by doing everything through him if you want Dr Gorgy's comprehensive testing. I investigated this back when I was going through my second lot of testing. I had all my testing done with Mr S through Bupa too - they covered all of my blood tests, every single one of them, which was darn lucky. I also asked Mr S to test me for a couple of things that he doesn't usually do (and doesn't believe in treating, which is utter madness as one of the problems this turned up is the one that is causing 90% of my problems, but that's another story) and they were covered by Bupa too. You should be able to get through any blood tests you need provided they're for recurrent miscarriage testing.

sameoldIggi · 19/09/2013 12:09

As Mr S helped me get my baby, I'm obviously a fan, but if I was looking for something further than the test carried out by Prof Q I wouldn't go to see him, as I think they would be too similar. I would use the consultation the insurance might pay for to see Dr G's colleague. (Ari that's really good intel!)

Tumtimes1 · 19/09/2013 12:10

Hi Luna welcome!
Yup Arianhod is right, Dr Eskander takes private patients and will test just as Mr Gorgy would.

My work private health care doesn't cover me for recurrent miscarriage, how crap is that!
xx

Arianrhod · 19/09/2013 12:11

You wouldn't believe the research I have tucked away iggi .. :)

sameoldIggi · 19/09/2013 12:17

I am now picturing you like this Ari in secret agent mode

Arianrhod · 19/09/2013 12:31

I can't see that pic, it says 'referral denied', I don't have permission to access the file. But if someone's been stalking me with a camera, I'm going to be worried ;)

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