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deedee1

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  • "deedee1" started this thread

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Reg: May 23rd 2008

Location: Cloud cuckooland

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Friday, October 30th 2009, 11:42am

Need advice on my upcoming immune treatment

Hi there,


I'm looking for some advice on my upcoming immune treatment as I'm not sure if what my con has recommended is the right way to go after my loss last time.

After 2 failed FET's, I was tested for immune issues and my cykoticity levels for my killer cells were very high - 33%

So for my last FET I was given a number of Intralipid infusions which resulted in a positive pregnany but I miscarried at 11 weeks.

My figures for that last FET were:

Before treatment 33%. 2 infusions just before and after transfer.

At 5 weeks pregnant, killer cells 24%.
At 6 weeks another infusion.
At 9 weeks pregnant, killer cells 15%.
Missed miscarriage at 11 weeks.

My con is recommending for my next FET: No chicago testing - expensive, and intralipids proved to work last time so will be used this time.

Intralipids week before transfer and day after.
Then once positive pregnancy test, another infusion immediately, so at 4-5 weeks. Immune tests a few weeks after and if necessary another infusion/s.

I wonder should I not get a few infusions in before transfer to lower my levels prior to transfer? They were still high at 9 weeks and I can't help but thinking they may have been a factor in the miscarriage.

My con says that there would be no benefit in having intralipids any more than a week before transfer but I know from reading here that some people sort their immune problems before even starting treatment.

I hope this makes sense and that someone may be able to gie advice/share their experience.

Thank you

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Friday, October 30th 2009, 12:04pm

RE: Need advice on my upcoming immune treatment

Hi Dee

Good to see that you are going for another cycle.

Like you my NK's were at 38% after my last miscarriage although I did have intralipids when pregnant and they got down to 9%.

I am now under Mr Gorgy and we are going with a stimulated IUI end of this year beginning of Jan. His advice to me is to do one IVIG and one Intralipid prior to ovulation and then on positive test I guess another one transfusion (of which one I don't know). The reason for this is that he is throwing everything at me as last time I did only intralipids and although NK's were lowered I think he is just being safe. I also have blood clotting issues, negative LAD and will be on every single drug going. He says that sometimes when women still miscarry although NK's were lowered with IVIG they just up the dose of IVIG / transfusions as there is nothing left to try.

I think that the two transfusions of Intralipids before transfer is your consultants way of being safe covering everything but you could ask about perhaps doing one of each? See what his opinion is on it.

I am happy doing this as IVIG has been used for a lot longer,has more studies and does the job it's supposed to. Not saying that Intralipids don't but they haven't been around as long. Just a shame that IVIG is so expensive compared to Intralipids.

Hope that helps.

x
TTC naturally, five miscarriages 2006-2009, Immune issues

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Mavis

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Friday, October 30th 2009, 12:05pm

Hello Dee hun,
As you know my clinic really likes everyone to take lots and and lots of IVIG! However, to my knowledge no-one has had more than one IVIG infusion before transfer.
I don't know how any of this is meant to work, but perhaps you can't treat a potential inflammatory reaction to implantation too far in advance ?(
So I guess I agree with your con, intralipids worked for your last cycle so no need for Chicago tests, and one infusion before transfer is plenty.
M
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deedee1

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  • "deedee1" started this thread

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Reg: May 23rd 2008

Location: Cloud cuckooland

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Friday, October 30th 2009, 12:51pm

Thanks Blondie and Mavis,

Blondie,

Its lovely to see you back fighting and ready to go again in January!. The human spirirt is an amazing thing, isn't it? I didn't think I'd ever be able to put myself through this again, but here I am, not exactly looking forward to it, but taking every day as it comes....

My immunologist I think trained with Dr Gorgy (Or DR T, can't remember which) and does seem to be following the same avenue.

He did mention IVIG, but didn't seem to think that it would be of any added benefit as the intralipids did its job. He also mentioned that because I had a "late early miscarriage" i.e I was in my 12th week, it was less likely to be my killer cells as they believe that most immune related miscarriages happen on or before 9 weeks.

I'm happy myself that Intralipids is the way to go for me (and my wallet is even happier...) but I just wondered if it would be better to get treatment to reduce my levels before I even started treatment, I had it in my head that some of you (Lou also) did this.

Mavis, again thanks for the info, I knew you'd be along to put my mind at rest!!.

I think I am going to have to stop questioning and second guessing everyone and thing and just trust that the professionals know best....

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Children: (6 angels in heaven) 2 girls a previous relationship, and now a baby boy thanks to treatment

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Friday, October 30th 2009, 8:23pm

Hi Deedee

you said "my cykoticity levels for my killer cells were very high - 33%" just to check, do you mean your cykotine ratio was 33? OR Nk 50: 1 = 33?

you also said "Before treatment 33%. 2 infusions just before and after transfer.

At 5 weeks pregnant, killer cells 24%.
At 6 weeks another infusion.
At 9 weeks pregnant, killer cells 15%.
Missed miscarriage at 11 weeks
."

did you have any other infusions after the 6 week one? because you had a Nk test at 9 weeks, and I think you Nk's were still raised at 15%?

Oh just read "I wonder should I not get a few infusions in before transfer to lower my levels prior to transfer? They were still high at 9 weeks and I can't help but thinking they may have been a factor in the miscarriage" I can't answer that? but personally I was planning to have Intralipids every 4 weeks, until my Nk's were in normal range.

This is what I have done so far... just in case it helps?:

I had:
thyroid antibodies = 444 (normal range is 0 - 50)
cykotine ratio = 54.4 (normal range is 13.2 - 30.6)
NK Cells 52-1= 29.9 (normal range is 15)
CD56 = 25.7 (normal range is 2-12)
CD19 + CD5 = 60.8 (normal range is 5-10)

I had 4 Humira injections before TTC and 1 IVIG about 1 week before ovulation, I had 1 intralipids a week after ovulation, IVIG 3 weeks later, then IVIG every 3 weeks until I was 12 weeks. (I HAD to have IVIG instead of Intralipids as my TNF was still raised, and aparentely after 12 weeks your TNF doesn't matter)

Then I had a test through the Millenova lab, to see how my Nk's would react to IVIG and Intralipids, and it was pretty much the same. Luckily, my Nk's have behaved, and I haven't had to have intralipids.

I also have had: traditional chinese medicine (herbs and accupunture), Eskimo oil, selenium, magnesium, pregnancare, wobenzym, prednisolone, pregestorone, low dose aspirin as I recently found i had a blood clotting disorder) B6, B12 and folic acid.

I have been gluten free for 6 months, and am on a low GI diet.

I also had a 9 month break from the last mc, until I tried ttc again (this was to save the money to pay for the treatment, but also wonder if the gap helped my immune system to calm down?)

Lou xxx
Need reproductive immunology success stories please 2 help others :)

have u got immune issues?

deedee1

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  • "deedee1" started this thread

Posts: 3,156

Reg: May 23rd 2008

Location: Cloud cuckooland

Children: 1 beautiful daughter

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Friday, October 30th 2009, 9:36pm

HI Lou,

My NK Assay 50:1 was 33, then 24 after 2 infusions, then 15 after another 1.

So I had 3 infusions to bring my levels to 15 which I believe is the high side of acceptable.

I did have another infusion at 10 weeks but it was the day that my scan showed up something potentially wrong as the baby measured 1 week small. At the following scan 1 week later, there was no heartbeat.

My other results were:
25:1 - 27
12.5:1 - 14
%CD3 - 84
%CD19 - 9.8
%CD56 - 7.5
%CD19 + CD 56 - 4.1

So everything but my killer cells are within normal ranges.

I'm just going to have to trust the consultant. In truth, they got me to almost 12 weeks last time, 12 weeks further than I've ever got before. Hopefully this time I'll go all the way.

Lou, time is flying along for you - I can't believe you're 15 weeks already!, congrats

Posts: 1,174

Reg: Dec 1st 2008

Location: UK

Children: (6 angels in heaven) 2 girls a previous relationship, and now a baby boy thanks to treatment

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Friday, October 30th 2009, 9:55pm

Thanks Deedee

I can't believe I am 15 weeks too! :happy:

I have a good feeling about you this time around, like you said, they got you to nearly 12 weeks last time, so this time I am sure they will keep an eye and take you all the way! :P

Lou xxx
Need reproductive immunology success stories please 2 help others :)

have u got immune issues?




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