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Discussion Starter · #1 ·
Has anyone else been going through ICSI for (severe!!! see my profile) MF and then been told they have immune issues too?

Have just had my blood tests back from Chicago through ARGC and it would seem that my CD19% is high at 18.7 and my CD19+ is low at 1.6.  Whatever that means.

Apparently I will need to have IVIG on my next round.

Out of a normal sample of women, how many would have an abnormal result like mine is what I want to know and can't seem to find out.

I only did the tests to rule out any female factor and it would seem to have rather spectacularly backfired.

I am still struggling to believe it, I mean if nothing else is wrong with me, no fibroids, no endo, no PCOS, no unusual cycles, no problems with ovulation... no problems with ovarian response during tx, no cysts...  Well, surely in the normal world I would get pg naturally sooner or later if it weren't for our serious lack of swimmers?

If anyone could shed any light on this I'd be grateful...  Am very confused  :-\
 

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Ah Claudine,

So sorry to hear about yet another hurdle for you.

Hope you find all the answers you need babe and tomorrow goes ok for you.

Lol  ^hugme^

Fin
 

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Hi Claudine

Sorry to hear this. Wishing you the best of luck for your hysterscopy tomorrow...

I dont know alot about immune issues - but as I have Factor V Ledien I have been on the immune thread a little...

There is alot of info on the immune threads posting... there is also Dr Rai and Dr ******* in London who deal with immune issues.

Dr Rai is based at St Marys Paddington, and his definite views on immune issues - I think he is against NK theory.

It cr*ppy its another thing to deal with - my bother calling me for dins so I will get back on later... basically I would consider another point of view before taking IVIG etc.....

SOrry you have more to worry about, Debs 
 

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Hi Claudine,

So sorry to hear about the test results. Probably the very last thing that you wanted to hear.

I'm in the same boat and found it difficult to come to terms with. It's just more bad news.

Would you like to send your complete results to me through IM and we can compare notes? I'm quite good on the "theory" now.

The immune stuff is very new and very little has been published. Which only adds to our dilemma.

When my DH survived the cancer and then we finally managed to get some sperm from a biopsy we thought that was it. Fate however, had another cruel joke to add.

I'm been trying to keep a poll going of immune treatment success/failures so have a look here as well.

http://www.fertilityfriends.co.uk/forum/index.php/topic,9273.0.html

With love from,
 

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Claudine,

We were advised by the ARGC to consider their battery of immune tests after a failed ICSI and frozen embryo attempt at the Lister. Since my numerous semen analyses all point to poor motility and morphology being the cause of our problems, and statistically two failed attempts is not at all unlikely, we wondered whether immunology was really an appropriate explanation. Scientists presented with rival theories often apply the well-tested principle of "Occam's Razor" - if there's a simple, obvious explanation, it's the right one!

We decided not to go ahead with any tests, partly because we felt there was no compelling reason to think we needed to, but also because we were unconvinced by the treatment protocols offered for "immunological problems". I guess in fairness I should say that in our case there was a little more justification for the tests in so far that the Lister had routinely (!) run their NK test (http://www.miscarriageclinic.co.uk/nk_paper_lock.pdf) and detected a raised level. On the basis of that test, Mo took prednisolone for those two cycles. It's a global immune-suppressing steroid - something that is normally avoided during pregnancy. For this cycle we're going to try without it.

There's an open and fierce scientific debate over the role of immunology in fertility. There's a wealth of information freely available from the internet; many fertility clinics have a couple of pages advocating the immunological treatments they offer, the abstracts to most journals are searchable online and I've downloaded research papers from quite a few too.

I'd be very wary about all this information - a little knowledge is a dangerous thing. I was an academic scientist for 10 years and I know that in my field (physics) to be able to read research papers critically and judge them takes many years of experience. Many professional scientists never understand their own field properly and just muddle by - you would be surprised by the number of papers I've seen presented for publication that are fundamentally flawed. I don't think this is the picture most people have of science - take everything you read with a good pinch of salt. Not surprisingly, and with the greatest respect to them, lay-people that read popular science books and a few research papers truly don't understand what's going on. I've no reason to think that immunology is any different.

My personal feeling is that the importance of immunology is overplayed, that the tests that are suggested are largely pointless and the treatments that are advocated are potentially dangerous and most likely are unhelpful. There's an interesting paper posted on this site at: http://www.fertilityfriends.co.uk/content/view/261/1/ by Ashley Moffett. She argues that the link between peripheral NK activation and the (dis)function of uterine NK cells is spurious. She makes a point maybe of some relevence to your own situation : "the percentage of CD56+ NK cells in peripheral blood in normal healthy individuals varies from 5% to 29%. Despite this, a finding of more than 12% NK cells in women with infertility or miscarriage has been arbitrarily defined as abnormally raised and used as an indication for treatment". I'm inclined to believe the substance of this paper; there's a report published by the Royal College of Obstetricians and Gynaecologists with similar conclusions.

Does anyone think the following paragraph is an allusion to the much-mentioned Dr Beer? "The situation is reminiscent of the publicity and controversy surrounding paternal leucocyte immunisation as a treatment for recurrent miscarriage in the 1980s. After much flurry and expense, this treatment has now been banned by the US Food and Drug Administration." There's another reference at "Nora"'s site: http://www.multiplemiscarriage.com/othersTreatment.php which seems to be making a point about this too : "A pioneer in the field of reproductive immunology popularized Paternal Lymphocyte Infusion". Although "Nora" have a vested interest in rubbishing other treatments, they make some interesting points including some strong remarks about IVIG e.g. "it is impossible for IVIG to act directly on uterine NK cells, rendering IVIG unlikely to be effective for pregnancy related disorders."

I do believe that at least the doctors we have spoken to are quite genuine in their wish to help and are not simply after money. However, I do have an uncomfortable feeling that there's a link between the huge amount of money made from these treatments and the frequency with which they're advocated on what I believe to be very flimsy evidence. There is an almost evolutionary principle at work that ensures that the clinics that offer the expensive treatments, even if their effectiveness is somewhat dubious, will be the ones that make money and prosper.

Anyway, the best of luck whatever avenue you decide to take.

Rob (DP of Mo)
 

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Dear Rob,

Thanks for writing such a long and considered reply. It's so nice to read something "neutral" on a subject which is often hotly debated (and opinions polarised).

I've been giving a lot of thought to this topic recently myself and it did help.

With warmest regards,
 

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Discussion Starter · #7 ·
Dear Rob,

Thanks so much for your reply.  Your first paragraph sums up my feelings entirely!  I think we have a very obvious reason for our failed cycles so far...

I need to spend some time reading.

Wish I hadn't taken the tests now!
 

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Dear Claudine

What a dilemma - I do think though that it was right to have the tests because whatever your decision its best to know all you can. For example if you decide to go ahead at the ARGC but without IVIG for your 1st cycle (not unreasonable given the cost - thats what I decided despite my immune issues) then you at least have all the info on deciding what to do subsequently (hopefully you won't need to cos it'll work 1st time).

The ARGC approaches all the basic aspects of IVF(stimms, blood tests, scans, embryo culture etc) very thoroughly in order to try to get the best fertilisation rates and hopefully this in itself will be enough for you and DH.

The evidence for IVIG is scanty but remember this is not because there have been large trials and they have been negative it is because there have not been large trials. Therefore no one can argue strongly for it or against it and the premise on which it is used is that there have been a couple of small positive studies and that people are willing to use it if there is a small chance of improving the chances of conception.

I'll look up the reference for one of the trials I read and forward it to you.

Either way you are at the right place for your treatment.

lots of luck

Marly
 

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claudine

I found a few useful trials using a medical literature search engine called pubmed.

if you go to

www.ncbi.nlm.nih.gov/entrez/query.fcgi

(or just put pubmed into google and click on the entrez pubmed site)

then search 'ivig and infertility'

there are studies (all small) of IVIG in patients with antiphospholipid ab, antithyroid ab and high CD 19 etc - all with infertility. you can click on each and read the summarised findings.

hope this helps (I know a little knowledge is a dangerous thing but it might help you to decide how to proceed)

love

Marly
 

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Claudine,

Your initial post on this thread really struck a cord with me! 

Like you, we were diagnosed with severe MF last year and recommended ICSI.  When we came to beginning treatment we discovered my FSH was a bit on the high side (9.7 highest) but still managed to get three good embies.  During Tx, ARGC did a mini NK cells test which came back borderline so had steroids, heparin etc.  Tx worked but sadly resulted in miscarriage. (Sac but no embryo at 6 weeks).

Now as we're gearing up for second Tx, have had full NK cell test, only to find out I have immune issues (not sure which cells raised as can't see Mr T for consult till 10th March which I find very frustrating!) and IVIG and Humira have been recommended!  I am open to IVIG  as it seems to have helped a lot of girls on the ARGC thread but will probably refuse Humira as having done some research am concerned about the risks!

Also, much like you and Rob, I feel we have plenty of reasons for my first miscarriage (after natural conception) and last years and so would this immune stuff  necessarily be a factor for us?  I don't know!!!!!    ???

Anyway, Claudine... good luck with the reading!

Callie  xxxx

 

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Discussion Starter · #11 ·
Hello again all

Just to say thanks for the recent additions, will be spending the afternoon tomorrow sifting through all the info and try to come to a decision.

I wonder whether my immune issues have come about as a result of the 3 cycles I underwent last year.  I had no problems in any of them but clearly my ovaries are still in shock with FSh being so high...

We may well have to look at donor if this cycle doesn't go well (we don't always have fresh sperm to work with!), I'm just so cross that my body has gone from completely fine to this...!

Good luck Callie with your next tx, would like to hear what you decide

Marly, am happy to be at the ARGC indeed as I am a detail oriented woman myself and it makes me happy to know I am being monitored so closely!
 

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Hi Claudine and all,

It's a very pertinent topic for many of us right now. Why do some of us start out as MF only and then eventually get diagnosed with immune issues?

One doctor that is addressing this is Dr Carter in the USA. I have been talking on the phone to him and emailing for a couple of months now as have other FF members.

He is starting to look at the MF immunity side and has some new tests and theories (don't they always....).

On his latest newsletter he talks about male immunity and this may be of interest to some people here. Part of his newsletter was pasted to this FF thread. See page 5

http://www.fertilityfriends.co.uk/forum/index.php/topic,18104.40.html

I really like Dr Carter as he is an Immunologist who now deals with reproductive immunology. I only wish we had someone like him in the NHS.

This is really just f.y.i. as I feel totally overwhelmed on this topic right now and still recovering from the neg.

With love from,
 

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Hi Flopsy

Thanks for this info. It is interesting and overwhelming and its seems like reseach is in the early phases...

I agree it would be great to have some-one like  this based in the UK...

I wish we had all the answers now, anything to help fertility treatments and stop bfn and miscarriage's happening.

Thinking of you, Debs x
 
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