NK ladies

[flossyboo]

Hi everyone

i have a big history of mc and am currently persiung the whole nk thing. my cons has emailed siobhan quenby but has had no response. not sure about whether to go to see dr shahata as i have heard mixed things about the way he tests (ie blood rather than endometrium.

my cons is happy to prescribe steroids if i want them when i am next preg - has anyone else had this done - i think i may have heard that st marys will now prescribe them without testing???

thanks
x

Hi flossy ... I've been treated for high NK activity (& anti-progesterone antibodies plus APLS) - I was diagnosed at the ARGC in London.
My pg history is :-

1 - miscarriage 8 weeks
2 - live birth 36 weeks, pre-eclampsia
3 - miscarriage 5 weeks
4 - miscarriage 12 weeks
5 - miscarriage 6 weeks
6 - miscarriage twins - 1 at 7 weeks one at 14 weeks - private treatment IVIG/clexane/aspirin
7 - live birth 38 weeks - private treatment - cyclogest & presdnisolone until 14 weeks, aspirin & clexane throughout.
8 - miscarriage at 17 weeks - NHS treatment aspirin only
9 - live birth 38 weeks - NHS treatment - 25mg prednisolone/day until 14 weeks, 2x cyclogest suppository daily until 14 weeks, & 150mg aspirin & 20mg clexane/day throughout.

For me it seems to the the prednisolone that makes the difference. My antibody & NK levels are borderline btw ... I managed to get my NHS consultant to treat me aggressively on the basis of my history of losses.

thanks - i have had 7 ranging from earlies, ectopics and 23 weeks. have been to st marys and have no diagnosed thrombophilias however, cons happy to treat with clexane next time,also progesterone supp.

shes great and will generally do what i throw at her but just wondering whether i should try and get tested rather taking steriods unnecessarily - prob is that will involve a flight and lots of money! (which am happy to pay but if she is willing to treat then i guess is there any point??)what did your treatment involve if you dont mind me asking??
thanks
x

TBH I had no problems with the steroids - it isn't evidence based & I'm not 100% convinced that the treatment/NK thing is relevant to my losses given the lack of evidence (e.g. I've only had peripheral levels tested not intrauterine) BUT I don't really care - when I've followed the evidence I've had losses & I believe that medicine is as much art as science - if you've found a consultant who is willing to work with you then you're doing really well.

After the twins I was pretty sure that I wouldn't have IVIG again - for me that was a step too far (apart from the £1000s it cost I had a pretty bad reaction to it) - so I'm not completely reckless.

I have hyperemesis too & the steroids have the fabulous side effect of controlling that (on the down side I put on weight - 5-10kg in 12 weeks use, am hungry all the time & have increased facial hair which sucks & doesn't seem to go away post pregnancy). It's never affected my blood sugar levels or BP which is a potential risk. My pregnancy regime is:

positive test - begin aspirin, clexane, cyclogest & prednisolone (I have a supply at home when I'm ttc). I take high dose folic acid when ttc that continues.

5 weeks - blood tests for platelet levels (because of clexane), book scan for 6 weeks.

6 weeks - scan - see consultant continue meds if gestational sac present.

7 weeks - re-scan - if heart beat present continue meds - 25mg pred, 20mg cleaxane, 150mg aspirin, 2 cyclogest suppositories (can't remember dose is it 150mg?)

weekly scans until 12 weeks then start weaning from pred at 12 weeks - off completely at 14 weeks (stop cyclogest also).

Then scans x2 weekly until 20 weeks - then have fetal med anomaly scan - they check for cleft palate (potential risk from steroids) & have first of placental function (doppler) scans.

Scans continue every two weeks until birth (with my last pregnancy there were signs that the placental was crapping out at 28 weeks so I had weekly scans) & doppler studies done monthly. I have elective section booked for 38 weeks but have CTGs done 3x week in day assessment from 35 weeks.

The biggest worry that my consultant had was the clexane - she's advised no more pregnancies (I think another pregnancy would kill me because of the effect on my bone density).

I don't know about testing - I have been tested for everything repeatedly and have never had any real answers - I got to the point that I just wanted to try something & was happy to accept the risks of some unproven treatments.

Hi ladies,

Siobhan Quenby and her trial have now moved to Birmingham, which may be why correspondence is going awol! It is still the only place doing the interauterine NKC test as far as I know.

Best wishes.

thanks ladies

dozer - my cons has emailed her at the right address but no reply..i forwarded the phone no. so she is hopefully going to try her tmrw

phlebas - thanks for the info-its really helpful. can i ask if you have identified clotting probs? ive been tested but nothing has shown up, despite this am having clexane for next preg (and cyclogest and weekly scans, swabs for infection and a stitch at 14 weeks!!!) the whole thing is so frustrating - i am so lucky with my cons - she has been with the whole way but i do sometimes feel that im driving things ..ive been happy with that but the steroid thing is that bit harder as theres even less stuff out there!!

thanks again ladies

Hi Flossyboo,

I've been to see Dr Shehata and can't recommend him highly enough. He diagnosed me with elevated NK cells and (after steroid treatment) I am now 23 weeks pg.

Good luck xx

Dear All,
It's so nice to find people out there going through what I'm going through. I had my daughter with no problems at all, since then I've had 6 miscarriages. 2 were just chromosomal abnormalities and not so bad. The others were at 20, 13, 12 and 14 weeks, two of them I had to give birth to as it was too late for a surgical evacuation. By the third one I took asprin but only a tiny dose. The last one I had clexane and asprin but it still ended badly.
I have had an endometrial biopsy with Siobhan Quenby and it came up as just on the upper limit of normal. I saw Professor Regan at St Mary's, who was great and very in favour of clexane. However now I really wish I'd been given prednisolone as well as perhaps it would have worked. The post mortem showed a perfect little baby girl with nothing wrong except that the placenta had packed in. I don't test positive for anything logical, just slightly raised anti-nuclear anti-bodies.
I'm feelign a bit confused at the moment as I've heard of people being given prednisolone before conception, part way through pregnancy, all the way through the pregnancy. Does anyone have experience of this?
Thanks

Hi RRH
you could always see mr George Ndukwe at Care Notts or Mr Gory at the FGA in London, they both prescribe prednisolone before conception. Or Mr Shehata at Epsom general does aswell. Have a look on the fertility friends forum under the immune adn investigations section, lots of useful info and positive stories too.
XXX.