anyone with positive NK cell test or used prednisolone?

Many of you probably know my story but brief overview.
2 m/c's in 2005 - unexplained. All standard m/c tests normal
2006 - concieved via OI/IUI, used clexane to 13weeks and produced gorgeous DS
2008 - 2 x twin pregnancies (OI/IUI/Clexane) m/c. Ist one found one twin had trisomy 15. recurrent m/c test repeated - all normal
2nd - normal male karyotype from one twin, other unknown.

Still searching for answers or at least a plan for next time, I flew to Sydney yesterday to see Dr sacks and have his NK cell testing.
Well, to my suprise, I got a fairly defnitive positive result
NK cell count = 20% (> 18% abnormal)
Activated NK cells = 12.1 (> 8.0 abnormal)
NO one truly knows if this is why I have miscarried but certainly could be an explanation

So, prednisolone is the treatment of choice which I am certainly happy to use. Was actually going to use it for my most recent pg ( without any testing) but my FS decided no given we got a trisomy result and I didn't need it for DS. I obviously regret this A LOT now as maybe my babies would still be with us.
However, can't change that now so trying to think ahead.
Just wanting to know what sort of levels anyone else has had to NK cell testing. Dr S said mine were fairly high but not really sure how high IYKWIM.
Also wanting to hear some thoughts on pred treatment. I know a couple of BB successes on pred but just wanting to know about side effects anyone has had etc

Hoping this is the solution for us!

I am so pleased you have some type of an answer and a potential treatment regime :hug: Not much use (except from a medical perspective if you want that) on the side effects etc from personal experience as I have not needed prednisone. I hope some of the ladies can give you their experiences but if you need the medical stuff, let me know.

Meredith, as you know I'm on prednisone, but we're not entirely sure if it's just because of my arthritis, or whether I have a definite problem with NK cells as well. In my first pregnancy, every time I reduced the dosage of my prednisone, I would get spotting. My doctor tells me it was just coincidence, but it happened on three separate occasions! Dr S was happy to go with possible NK cell problem given the level my results came back at while being treated with prednisone.

He suggested we increase the dosage I was on... and that didn't work out so well, with two chemical pregnancies while using the higher dosage.

Eventually, I decided to go with the dose I was on during the first pregnancy, as the NK results were within an acceptable level while on that dosage. I was just VERY careful to make sure I took it every day, and have to admit that because it's managing my arthritis, I still have not reduced the dosage at all.

When it comes to side effects - I find very little at 10mg. Perhaps because I've been on it for so long now (it's been over 12 months more or less, sometimes higher, sometimes lower). At 20mg, I found I would gain weight very easily. I would at times suffer from mood swings, tending towards being angry, aggressive and generally irritable (constantly wearing my cranky pants, you might say). Muscle cramps are an odd one, but one that I get when my body is telling me I'm taking too much of it. Another peculiar one to me is that I simply can't take it at night! My rheumy wanted me to take it at night as that would give me better coverage in the morning when my arthritis tends to be worst. If I do, I simply do not sleep at all. If I'm very careful with regards to diet and exercise, I can usually keep the weight gain slowed down, but it does increase the appetite, so it can be damned hard to actually do! Weaning off is also a complete hassle - I tend to need to go slower and in smaller increments than most people, which is another reason I haven't started to come off it yet!

I will add that there are many drugs where I seem to be highly sensitive to the side effects - sometimes what I experience isn't going to be anywhere near what someone else will go through, but it's good to be aware of just how bad it can be. My rheumy (and I vaguely recall Dr S possibly saying something similar) always suggested that split doses (if you're on 20mg, take 10 in the morning 10 at night) makes the side effects more manageable and weaning off easier, but it's just not an option for me with the sleep disruption.

BW

Hey Meredith :hug:

Sounds like your trip to Sydney was worthwhile, though for the saddest of reasons.
As you know, I have had only one unexplained MC (the other two were chromosonally abnormal). My result was considered normal/ borderline:
number of NK cells 14.8% (normal <18%)
concentration of activated NK cells 9.2 (normal <8).
Dr S advice was to carry on and not to treat me for NK cell issues.

Hope this guide is a help
WTH x

Hi Meredith - I honour you for being so proactive and searching for the answers you need. I know how scary but also how exhilarating the journey can be. :hug:

It does show some NK cell over activity and as Dr S no doubt explained NK cell losses are most usually in the first 8-10 weeks of pregnancy.

You probably remember that I also was on prednisone - and I know you have a medical (albiet furry one :p) - so you no doubt also know prednisone is steroidal. It is a heavy and potent drug that carries significant side effects.

My personal experience was that I gained heaps of weight. I was on 25mgs from week 2 of the cycle prior to conception. I also became extremely insulin resistant. My body type is curvy - big breasts and curvy - however I have never been "fat" but on the prednisone I was - and only now almost 12 months along am I beginning to shed my weight.

I have had many babies and many pregnancies and never before have I had stretch marks but I did this time - even though Imogen was extremely premature. Another of the lovely steroidal side effects.

Your age makes it more likely that you will develop GD - and the steroids will make that risk even higher. I was insulin dependent and incredibly scarily at times unstable.

The day I had Imogen (I am "normally" 60kgs) I weighed 105kgs. 9 days later I weighed 82kgs. Right now I am about 75 & falling. However much of that weight (obviously) was due to my kidney failure etc etc. But the prednisone didn't help me if you get what I am trying to illustrate! ;)

Would I do it again - in a heartbeat. But I went in eyes wide open and so will you. I believe that my weight gain was largely as I was quite depressed really. Incredibly anxious and afraid - as I just didnt think my Soul had it in me to deal with another goodbye. But steroids by their nature create insulin resistance which increases your weight. I think I remember from pictures that you are a skinny minny so you may not have such a problem.

BW and Flowerchild - thankyou for your experiences. I had hoped to get a reply from you both.
I am a touch scared about potential side effects from pred but really, if it gets me a live baby, bring it on!!
I must admit, DrS downplayed any ill effects, saying he rarely sees any but who knows, maybe I will be lucky. I am fairly slim so hopefully the weight gain won't appear to bad. He did warn me of the insomnia and not looking forward to that as pregnancy does that to me anyway. May not sleep at al!!
I will probably be on 20mg and tapering from 12-20weeks. will also stay on the clexane. Along with all the fertility meds, I'm going to be rattling!
Just hoping I get a result like you girls in the very near future.

WTH - when do you start your stim meds for IVF? Very keen to see how you go as we are very likely to go the IVF/PGD path along with prednisolone. Covering all bases, so to speak.

Hi Meredith

I am on Day 19 - so I start the Provera tonight. Been trying to eat very healthy and am doing accupuncture. I will definitely keep you posted.

Look after yourself :hug: