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ktb

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Wednesday, March 30th 2011, 9:42pm

DQ Alpha results - HELP PLEASE!!

Hi immuney legends,

Please help!! We have just had our last final immune test done - HLA DQ Alpha and we have a match.

Me - 0102 - 0201 and Hubba is 0102 - 0501

So we both have 0102, and I know that 0501 is not a good one to have, but I don't really understand what the results mean.

We have had 6 BFN's (5 fresh cycles, I FET) and this is our last immune test. All other immunes are fairly normal, my CD3's were slightly above the normal range, but not enough to have not produced pregnancies for others apparently.

If anyone knows about this and can maybe decipher this for me/us, we would be really grateful!! We are at ARGC and they do not like to do this test (or decipher it)

I have heard that Dr Gorgy (also in upper wimpole st) is good with DQ Alpha stuff. Anyone know or used him??

I look forward to hearing your thoughts.

thank you in advance, ktb.xxx
Cycles 1-6 2008 - present. All BFN's too boring to list now! (5 fresh & 1 frozen) :faint:
Cycle 7 - October 2011 3 x LIT, Intralipids, 60mg clexane, 100mg Prontogest, 25mg prednisolone. :BFN:

Check out my blog here - KTB's lucky number 7 Blog.......

ruthie

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Wednesday, March 30th 2011, 11:25pm

OK so here we go!

The results you've quoted are your genotype results, ie what HLA genes you have. The proteins that those genes code for are called the phenotype. (Genotype is always what genes you have, phenotype the result, so BB might denote your genotype, which would mean brown eyes phenotype, bb would be blue eyes).

Some of the genes code for the same phenotype, so the first thing to do is to turn your results into phenotypes:

you are 0102 0201 which comes out as 1.2 2.1

DH is 0102 0501 which comes out as 1.2 4.1

Then we look at what your embies might be. All your embies will have one copy from you and one from DH so phenotypically they might be

1.2 1.2
1.2 4.1
2.1 1.2
2.1 4.1

Now you can see that 25% of your embies will be 2.1 1.2 which is identical to you (it doesn't matter which way round they are listed), so 25 % will be a match for you.

The 0501 is a problem if you're matched for it, which you aren't. For some reason, it is thought to produce a very aggressive NK cell response. Although you aren't a match, the fact that DH has 0501 it means that 50% of your embies will have it. As you don't have it it isn't a match as such, but some docs think that the presence of it alone can cause problems.

I'm a bit sceptical about that, as a lot of people have to 0501 allele so if it were a problem whenever present you would expect far more m/cs. Apart from anything else, all those people who have 0501 were at one point embies with 0501 and they didn't get miscarried. in general, if a gene survives in a population, it can't cause major problems. If it did, it would die out. The reason some bad genes survive is because they only cause a problem when there are 2 copies of them (what's known as recessive.) Cystic fibrosis is one of these. Loads of people carry one copy of the CF gene, and it doesn't cause health issues. However, if two people with it have a baby there is a 25% chance that the baby will end up with 2 copies of the gene, and that results in disease. I think about DQ genes in the same way.

However, not everyone agrees. As I say, there are docs who think that one copy of 0501 can be enough to cause probs.

Either way, you have a match, and this means that 25% of your embies will be an issue. ARGC say that it doesn't alter their tx knowing that. I disagree as we are always told that NK flares can occur very rapidly. ARGC go for a frequent testing of NK levels, and in theory if you have a DQ match and a resulting NK cell flare they will see it and treat it. I just don't believe that that protocol is aggressive enough in some cases as it may be closing the stable door after the horse etc etc. My latest cycle was the only one with high dose steroids and ILs together, and I wonder whether that was the reason it worked. Obv I presume that some of my embies just weren't meant to be, but I don't believe that all my BFNs are due to embie quality, I think I had NK flares after ET.

However, that's my opinion and obv not fact at all. When I had my DQ alpha checked Dr Dimitri was the most sympathetic and helpful. We weren't a match so it was a moot point but he might be someone to discuss it with.

Hope that helps, if it doesn't make sense I apologise.
I also hope I haven't explained things you already knew, I never know quite what genetics knowledge people have.

Hope you're ok otherwise honey.

xxxxx

Why Bee

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Thursday, March 31st 2011, 12:18am

Sorry ktb that I can't help at all, I read your post earlier and wondered what kind of reply you'd get.... Blimey I've learnt loads from Ruthie! Thank you!
[zx102]

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Thursday, March 31st 2011, 12:35pm

I am the same as why bee. I never understood the whole dq alpha thing and was interested to see any replies. Ruthie, it's the first time I've read an explanation and actually got it!

You could always be a teacher if you decided to give up vetting(-:

BraveGirl

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Thursday, March 31st 2011, 1:34pm

hi ktb

DH and I have 0301 match. We were on high dose steroids and intralipds.

My cousin has 100% match with her huibbie and is under Dr Gorgy, he is suggesting intralipids, IVIG and LIT.

good luck hon x
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Thursday, March 31st 2011, 5:17pm

I think Ruthie has explained it really well. Dr Dimitri is @ the ARGC.
Take care
:xxx:

ktb

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Thursday, March 31st 2011, 8:49pm

Thanks lovelies! Especially you Ruthie, You put it so simply. Dr beers Book just confused the hell out of me. My only issue is that ARGC won't just give me steroids and certainly won't give me IL's as when I have my NK cell assay done. they are not high enough to to give to me. The only time i did have steroids, I got a very very low positive hcg of 8, which only moved up to 9, but at least that time it did show a sign of implantation. My only inkling of a BFP since starting IVF.

What would anyone else do in my situation. I did ask Dr Dimitri when I saw him at my follow up about IL's and he said they won't give them to you unless you have a slightly high NK cell assay of some sort. So should I go and see Dr Gorgy for a chat???? Should I be more demanding with Mr T - but he doesn't do DQ Alpha stuff??? What to do. 25% with a match doesn't seem that high, when we have had so many BFN's. Perhaps my eggs are just totally screwed and I should go straight to Donor eggs.

Any thoughts?

Thanks for your responses.

Big hugs,

kt.xx
Cycles 1-6 2008 - present. All BFN's too boring to list now! (5 fresh & 1 frozen) :faint:
Cycle 7 - October 2011 3 x LIT, Intralipids, 60mg clexane, 100mg Prontogest, 25mg prednisolone. :BFN:

Check out my blog here - KTB's lucky number 7 Blog.......

ruthie

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Thursday, March 31st 2011, 9:25pm

It's a really really tricky one. Ironically I am now in the position of not following ARGC's protocol but a generic immune one. On bloods the only thing I have wrong is my TNF. My NK cells have always been normal, occasionally one very slightly elevated but basically nothing to write home about. As a result ARGC have been all about the Humira with me, but v reluctant to give me steroids. My first cycle with them was a BFN (low dose dex pre ET, nothing after), then my next FET was an early faint BFP but a BFN on OTD. With this cycle I had 10mg pred after ET. I then asked for higher dose pred but they wouldn't let me have it, and my next FET was a BFN. They were convinced that this was immune, but honest that they didn't know why. They didn't think it was embie quality as I had 2 BFPs from my first two cycles, really good quality embies and loads of frosties.
So on my last cycle I followed their protocol and they ended up giving me high dose pred, just cos. No reason based on the bloods, my NK cells are still normal, but they felt they needed to try everything. Obviously you know what happened there but at least I know that from the immune point of view my probs CAN be solved!

As they gave me high dose pred regardless, and the journey to London is so stressy and hard for us we aren't going with ARGC at all next time. I still really rate them and if I had unlimited money I would just book into a 5 star hotel near the clinic and live there for a month, but I don't. The only way we can practically and financially do another cycle is to stick with our Truro clinic. My cons here is great and she is prescribing clexane, aspirin, pred and intralipids. Most NHS cons probably wouldn't do that (we see her privately but she's NHS iykwim), but she is really helpful. I fret a bit about not having a tailor made protocol but I figure if ARGC had started giving me drugs for the hell of it, my cheaper nearer clinic may as well do the same!

As to donor I just don't know. What have your clinics said re egg quality? They usually can tell quite a lot based on stimms response and embie quality etc. Dr G has v good reports and from what I hear is more inclined to throw drugs at you! Or you may be able to persuade another clinic to give you a more generic protocol including steroids. Where were you before ARGC?

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Friday, April 1st 2011, 9:31am

Hi KTB

I had an 0501 match with my DH and an 0102 (though I'm sure my results said 0101!) So in theory, as Ruthie said, this would produce a particularly nasty flare if they ever appeared together. And my NK cell levels although normal, showed particularly potent activity when activated - CARE likened their strength to the SAS crossed with a Ninja squad.

I don't believe that my embies were crap either (apart from on one of my cycles) as I had blighted ovums in all bar 2 cycles (one of which was a twin which apparently allows NK cells to attack other embryo, the other was steorids alone and limited IL's). And these are classic results from immune flares.

Once I had the IL's and the steroids this one seems to have stuck around.

I've had further IL's prescribed by my GP and he was happy to continue giving me dexamethasone until I didn't need it anymore - especially as there was a letter on file from CARE detailing my protocol. Clexane is a sticking issue as CARE don't think I need it anymore - but I've got another appt with GP today to argue case.

I think like Ruthie, if you can get a clinic or GP closer to home to prescribe everything ARGC can, would you want to put the extra expense and stress of travel etc on yourself? I imagine you'd want a full and proper immune cycle before deciding enough was enough with your own eggs??

I know what a head mash this stuff is.... :cuddle

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

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Thursday, April 7th 2011, 11:17am



I'm a bit sceptical about that, as a lot of people have to 0501 allele so if it were a problem whenever present you would expect far more m/cs. Apart from anything else, all those people who have 0501 were at one point embies with 0501 and they didn't get miscarried. in general, if a gene survives in a population, it can't cause major problems. If it did, it would die out. The reason some bad genes survive is because they only cause a problem when there are 2 copies of them (what's known as recessive.) Cystic fibrosis is one of these. Loads of people carry one copy of the CF gene, and it doesn't cause health issues. However, if two people with it have a baby there is a 25% chance that the baby will end up with 2 copies of the gene, and that results in disease. I think about DQ genes in the same way.





I am 0505 0505 which is 4.1 4.1,the worst that could be,and I am here alive and not miscarried :)

We too have DQ match(my husband is 4.2 4.1 so 50% match ),but myself having this sort of numbers give me hope that even with this match embryos can survive.
Every step is a step closer.




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