update on 'nk ladies'

[flossyboo]

well my lovely consultant spoke to siobhan quenby today -she was v impressed by her. thing is she has completely turned things on their head and said that i dont sound like an nk person so wouldnt recommend steroids, also not aspirin or clexane but would recommend high dose progesterone as apparently there is lots of emerging evidence to suggest that this does loads of good in recurrent mc.. cons was planning to treat with high dose folic acid,prog and clexane - she is still happy to prescribe whatever i want as long as there is no significant evidence of something causing harm. i asked her what she would do if it was her and she said tbh she would prob throw everything at it!

so frustrating - still no further on and the 'experts'are all so varied in their opinion! at least my cons is happy to admit that this is not her area of expertise and will happily seek advice from others - just a shame theres no def 'right answer'

am def going to take the clexane and high dose progesterone but just not sure about the steroids!
any advice ? what would you ladies do????? (suppose its no bad thing that im not pg at the minute and dont have to make a decision yet!)
x
x

Hi Flossyboo, interestng about the progesterone. Think I am in the throes of my 3rd loss in less than 6 months, and have been diagnosed with high nk cells, so I need to work out what to do next.

Like you, I'm reluctant to take steroids, so need to find someone who doesn't believe in nk cells to find another solution to my problem!

Can I ask what the Clexane is for?

Hi ladies,
it's so hard isn't it to know what to do for the best. I have been dx with high nk cells and unfortunately steroids, progesterone, clexane and aspirin have not helped me to stop mc so i have now had the full indepth chicago tests done which showed other immune issues whic are linked to mc's and am trying again using intralipids alongside the usual drugs (steroids etc..) so fingers crossed this will be my answer to holding on to a pregnancy.
Goodluck ladies.XXX.

thanks ladies - i will def go ahead with progesterone, high dose folic and clexane but just not sure about steroids - ive not been tested and i wonder whether i should get tested just to put my mind at ease - reluctant to take them as they sound so grim expecially if prof quenby says i dont sound like an nk person but if i dont use them and lose another then i will always wonder...

grrr at such a confusing problem!!!

thanks
x

ps - runingwithscissors (interesting name btw!!)clexane is for blood clotting probs - i have not been diagnosed with this but lost a baby at 23 weeks - post mortme showed signs of early placental infarct which may have been a result of these probs

It's a lot of money to pay for the NK cells test - I'd love for mine to be re-tested, but that would be another £600...

Sorry Flossyboo - just answered your old post. Just wanted to add that I had no problems/side-effects with the steroids at all. I was worried about taking them but they were fine.

I think you should definitely have the test as then at least you'll know either way. Dr Quenby can't definitively say you don't have elevated NK cells if you haven't had the test..

Hi Flossy
I took part in a trial for NK cells under Quenby last year.
She and I were 85% sure I was actually on the steriods as opposed to placebo.

Like Iris I was also apprehensive about possibly taking them.
I did have slight side effects,increased appetite occassional sleep disturbance, weight gain.
I was scanned every 2 weeks and really looked after.

The good news was that after 5 losses we got a heartbeat and reached 12 weeks.
The bad news was that the steriods possibly masked any severe sickness that would've indicated that our bean was a Molar Pregnancy and had chromosome duplications and would not have made it anyway.

As I took part in the trial I will get the steriods next time without fail.

Have the test if only to rule it out,it's a biopsy and I got my results back in 2 weeks. Quenby is very good if not just a little mad.

Keep me posted on how you get on and good luck everyone xx

Ladies

Wanted to update you on my story. I had 4 m/cs and was diagnosed with high nk cells at the lister and took 25 mg prednisolone steroid, aspirin and progesterone with my dd (now 16 months). Side effects are not nice, think fat bearded lady who cannot sleep! Anyway, had another m/c in Jan and was tested again and found to not be responding to just steroids so am now 13.5 weeks pregnant having taken 25mg steroid and had intralipid infusions with this pregnancy.... for me it seems to have done the trick but you just never know. The steroids are not nice but emphatically not that bad and the outcome if it works is mind blowing! Good luck xxx

Hi ladies, just to say that after four early losses (following the birth of my daughter) and no real test findings (have had the lot except the NKC and immunology type tests) I have been treated with progesterone pessaries from 3 days after ovulation each cycle then for the first 12 weeks, and clexane (v low dose, 20mg) injection daily from my BFP.

Am 20 weeks pregnant now, still anxious but much more hopeful.

Think that the NHS NKC clinical trial is still running but has now moved with Prof Quenby to Birmingham.

Best wishes.