NK cells and Recurrent Miscarriage Trial at LWH

[sue10]

Hello ladies,
i have received the Autumn 2008 newsletter from the miscarriage association and in it it talks about some trials that are going to start looking t recurrent mc's.
One of them is with Dr Siobhan Quenby whereby she is testing for uterine nkcells and usiong prednisolone as part of the treatment. The number to call if you are interested is:
01517024271. The criteria is that you are between 20 and 40 and have 3 or more consecutive mc's and have all the standard investigations without any problems being identified.

The other trial is with Dr Raj Rai at St Marys aswellas 7 other university hospitals whereby they are again looking at recurrent mc's and the use of progesterone.

Just thought i'd share this info with you all.
Takecare everyone.
sueXXX.

[OracleInaCoracle]

oooh, thanks.

[tryingnottoobsess]

Thanks so much Sue! (and Jules for the mail to tell me about it!)

Just tried the number, and unsurprisingly there is nobody there at the weekend, but will try again on Mon.

[sue10]

That's ok ladies, i would email Oinker but dont know how to send personal messages on this forum? I think this if the first NHS trial for Nkcells testing (about time hey!!!) Her secretary is really friendly and explained to me that they dont care if you already have been tested for NKcells through blood tests as they don use that way of testing. I really hope this is going to bring us answers and real solutions to making our dreams/needs come true!!!
SueXXX.

[sue10]

Hi JJ, this is encouraging, how wonderful for your friend, it really does give hope. I will email MN direct to see if they can help in mailing Oinker with this. Takecare.
XXX.

[SnoopDog]

HERE IS SOME MORE INFO

[sue10]

Thanks for this snoopdog, its quite encouraging is'nt it, atleast it gives us some hope!
sueXXX.

[SnoopDog]

tis jules

any news for you sue,

did you get on the trail

[sue10]

HI there, just need to get letter from gp then have to call after next ovualtion to go for biopsie!!! Am a bit scared but am sure it cant be that bad/painful, after what we have all been through pain seems to hold a different meaning these days! Are you doing the trials?
sueXXX.

[loz73uk]

hi.
can anyone help.Ive been invited on the NK trials.In the process of doing the ovulation test.Ive got two lines on the test,but it says the test line has to be darker or the same has the controlled line. The test line is slighter lighter. Im having the usuall signs of ovulating.Dont know if to ring the hospital for the test.

[sue10]

I think the test line has to be darker or very similar to the other marker (line). I tend to use the digital ones which show a smiley face when surge is detected then you can't be mistaken as it is tricky isn't it!. Perhaps you could call Dr Quenby's secretary Diane for advice on 0151 702 4271
Goodluck
XXX.

[loz73uk]

Hi,
thanks for the reply. Been intouch with Dr Tang who is also doing the trial. she said its about the right time of the month for me to be ovulating but the test comes up negative. This is my first period since i had a D/C. Did'nt have a proper period only spotted. I think i'm going to wait until my next period as the non ovulation might come up as a false reading for NK cells. Dr Tang said that the cells are at there highest during this period (ovulation).
I've got two kids. But in the last 2 yrs i've had 5 m/c (2 of them where twins). The wheels of miscarriage are so slow. Drives me mad.

[sue10]

Hi loz,
glad you managed to sort things out, probable best to wait so that you are sure then test results will be accurate. Sorry for you losses, drives me mad aswell!!!! Hopefully we will all get there one day!!! Goodluck.
XXX.

[loz73uk]

Does anyone know anywhere near nottingham. Who's testing for nk cells. NHS not private.

[oinker]

I am on it...........
Not going to be part of the trials though as I am not going to chance taking a placeebo. I will do my own thing........

[oinker]

Loz.......

Liverpool is the only NHS but you still have to pay £480.00

[sue10]

Hi Oinker, nice to see you back, chatted a few months back and was wondering how things were going. Am plesed you have/are going for the nkcells testing, let us know how you get on. Are St Mary's still playing up with regards to the use of steroids??? Takecare.
XXX.

[oinker]

I will be going to LWH in the next couple of weeks. A/F is here at the moment. I can't wait for the test.

What will they do when I get there?

Does anyone know? I hope they just get down to the nitty gritty... I really don't want to be sitting there going through my history then onto bloods, weight, height etc etc.... I just want my NK cell results.... I am getting quite impatient with it all.

[gannet1]

Just for the record, although it is not in direct response to this thread, but I cannot seem to find the original one I was on, I have had extensive NK cell tests and treatment as I have EXTREMELY high NK levels. I have had 9 miscarriages. The point is, if you want to get this fully tested in London the only place offering the full tests is the ARGC who get the tests done at the late Dr Beers clinic in Chicago. Although Shehata will offer you the full steroid treatment, he only does a couple of elements of the tests and my results were borderline with him. Lister also does not do the full testing.

Once you know what you have, Dr Shehata is the only Dr I know of in London who can be relied upon to give you the treatment. Raj Rai etc at St Mary's won't give you a commitment beforehand to offer the treatment. The "safe" treatment is recognised to be 25 mg prednislone, 75 mg aspirin and 400 mg progesterone. Oh, and when you get your results at the ARGC they push you really hard to have the IVIG treatment which is unproven and HUGELY expensive (I spent over £20k there on one IVF treatment where I miscarried, albeit due to chromosomal aneuploidy). If, I'd just used steroids, I could have shaved £8k off that bill.

It is probably too late for me know as I am nearly 44 yo but it is immensely encouraging to see that Dr Siobhan Quenby is offering that trial in Liverpool now and I would strongly advise anyone who is is the higher numbers of misc (i.e. at least 5 or 6) to go for it. It is really, really, really hard and frustrating to get this treatment you need anywhere else in London and Shehata's clinic won't provide the emotional support which is vital if we RPL suffers are not to go completely mad with the stress. Don't be put off by what Dr Winston says in the press today, as the Hammersmith is notoriously conservative in its approach and geared more to research papers and surgery.

Incidentally, Raj Rai put me on the progesterone during my 8th pregnancy and although I still lost it, it lasted 5 weeks longer than any of my previous pregnancies. Again St Mary's is v. conservative and if you have the NK prob, you need at lot more than 400g once a day, i.e. at least 2-4 times that if you are not getting any other NK treatment.

I hope this post is useful to people and cannot stress stongly enough how important it is for you to be pushy and pursue the treatment you want. Don't be advised by these London hospital clinics or you will get nowhere (but they will still happily take you money - my consultant put me forward for ivf AFTER i'd already had 3 miscarriages when the correct approach would have been a specialist repeaat miscarriage centre, but of course they don't get paid to make that referal). What did I know back then, 6 years ago?

I now need to have donor egg and NK treatment (2 x the stress, anybody?), so please don't ignore this advice if you have had a lot of miscarriages.

[sue10]

Many thanks for all this info, I wish i had known all this when first started having mc's but just kept being fobbed off until i started researching various tests/clinics myself!!! It's such a shame that local gp's do not have all the info as to where we can go for tests etc..., it's as though we know more that them sometimes!!! I think CARE at Nottingham do the tests aswell, think they send the bloods off to the Beer clinic in Chicago? Goodluck with everything.
XXX.

[Ange2005]

I've posted this twice now - not sure if this message will end up in the right place!

Thanks to everyone for your postings, they have been really helpful.

The last four years of our lives have been a challenge. Our son was born in May 2005. Sadly he died aged eighteen weeks of a little known genetic disease called SMARD1 (Spinal Muscular Atrophy with Respiratory Distress). Each of our pregnancies has a one in four chance of being affected by SMARD. Sadly since losing Fergus we have had five unexplained miscarriages - not linked to SMARD (number five is currently happening hence my desperate 'Googling') and a termination as the baby had SMARD and would have died within the first six months of its life.

We have had recurrent miscarriage investigations by our consultant at Addenbrooke's, and privately by Lesley Regan at St. Mary's. The results showed no issues. During my most recent pregnancy I was taking progesterone and Clexane just in case it might help but obviously it didn't. I'm thirty five.

Anyway, I just wondered if anyone had any more information on the NK cells research?
Any advice or info. gratefully received!

Thanks for reading.

Very best wishes to you all.

[sue10]

Hi Ange,
am so sorry for your loss's its very very sad. I dont know if this will help but thought i'd share the info i have from other people in similar situations:

CARE at Nottingham do the full level 2 tests ie, nkcells, th1 th2 etc,
google George Ndukwe.
ALSO
ARGC in London

Both these clinic use ivig, humira, heparin, steroids, progesterone etc to help maintain a pregnancy and lower the nk cells.

Liverpools Womans Hospital with Dr Quenby is doing a trial on nk cells but only uses steroids as the treatment which for some people is not enough as they need the ivig and or humira aswell.

Hope this helps a little.
Takecare.
XXX.

[Ange2005]

Thank you!

I will get 'googling' again. I've already contacted the hospital in Liverpool but will now contact CARE. It's all just so unbelievable.

Take care,
xxx

[amelied]

Hi Sue10 - you seem to be the "person in the know" on this. Are you aware of any clinics in Scotland or suggest where I could research??

Many thanks in advance.
amelied