NK Cell result back - Very high

[Cuddlepie]

Just came back from Dr. S appt and got a big shock when he told me that the result is very high, its 30.7% and activation increasedby CD 69 marker.... He said it can be treated by immune supressive treatment such as pendisone (spenlling?) and Clexane injection but he seems to be reluctant to go in details as I am currently still with SIVF. I was a bit dissappointed but I do understand his position as he doesn't want to impose on another doctor's treatment plan.

Apart from the big shock, I am so glad I did this test and finally find sth wrong with me. Weird I know. But this soon is replaced by so many questions and anxiety and I am a bit scared too. How effective the treatment is? What exactly it is involved, any sideeffect? I know quite few of you have been on the treatment of pendisone and Clexane, but can't exactly remember if it is for the same reason, ie. Farmgirl, BW and WLB...

Then of course the question of should I stay with Dr. Lok or change to Dr.S given he is the expert in this field. Is the treatment quite standard? Or it does take a bit experitise to assess your case and adjust dose etc?

How would it affect pregnancy if you do get pregnant? How long does it last into pregnancy?

I am also about to start Antagonist cycle and now thinking maybe I should give myself a bit time to digest, to form a treatment plan. On the other hand, maybe I can just do one cycle with no transfer? My head is going to explore!

I am so sorry that I need to ask all these questions, I should have taken more mental note when others discuss this problem in the past. I am also digging some of the old thread to get a grip on this concept. Any help would be much appreciated girls.

[butterfly_warrior]

wow. It's always such a shock when you finally get your answer.

Personally, I'd switch to Dr S. But it would be worth discussing your results with Dr Lok first to see what he thinks.

From memory, the treatment is 20mg of prednisone from transfer until 12 weeks when you begin to wean off. I had to alter that as we were also trying to juggle other medical problems as well, and I didn't ever end up coming off prednisone through the entire pregnancy. I believe you will be on the clexane much longer, but I don't know the details there as I used aspirin.

Side effects of prednisone - weight gain, altered moods (makes me irritable). Seems to increase carbohydrate cravings. The weight you gain will centre on the belly... A friend describes the prednisone look as a potato with sticks stuck in for arms and legs. Horrid moon face. I have difficulty remembering as it's been a drug I've been on for so long... it does deplete calcium reserves so it will be important that you take an extra calcium supplement while you take it so you don't end up with osteoporosis later in life. Basically, prednisone turns me into a fat and grumpy cow. It is important that you wean off it slowly. Even if you take it only for the TWW, you'll then spend the next 4 weeks weaning off the drug.

The treatment does seem to be pretty effective, but I wouldn't know exact figures.

It is a lot to digest... but there's also the apparent changes to medicare rebates next year to consider as well.

I hope this has helped in some way - I wish I could remember more for you!

BW

[Cuddlepie]

Thanks BW, always first to jump to rescue...

[Sara69]

Hi CPie, Just sending a , really happy that you have now found something that can be treated. Sorry can't give any advice on it. Personally I would ask Dr Lok what he suggests.

Sara

[dusty]

CP remember what Dr S said on your first visit, well at least he did to me.

The results of research into NK cells and their possible impact on conception and pregnancy is not clear on whether they have an impact or not and is not particularly scientifically rigorous due to limited results and the absence of control groups etc. He was pretty clear with me at my consultation that going through these range of tests can raise more questions than they will maybe be able to answer. I am sorry that you have been put in this predicament .

Also the treatment for possible impacts of NK cells is also not proven and in some ways is still in its early days. I have heard around the traps (and have nothing but chat to base this on as yet) that some FS who have been using prednisolone treatments for LTers are now going off its use for a range of reasons. Something your Dr L may also have some thoughts and information about.

In the end you can only arm yourself with as much information as you can, and with guidance of specialists like Dr S and Dr L make a decision which way you want to go.

I can?t write much more ATM sorry but on the issue of your next cycle, perhaps delay it for a month if that wouldn?t cause you too many problems so you can get the information and advice you need before deciding on your next step.


xx

[Cuddlepie]

Thanks Dusty. I don't think Dr.S actually make it really clear until this time. I somehow had an impression that he is an expert in this area and would jump to the opportunity to fix my problem, to my dissappointment, he is quite vague about it and mentioned along the smiliar line of 'no proven research' that NK cell definitely is the reason for my 'implantation failure', given my age, it also could be egg quality and other reasone. He also said the same thing that the treatment is still at early stage, maybe that is why he didn't give me a detailed plan just said different doctors can have different treatment plan etc. I do understand being current under another doctor's care, he might not be able to say too much.

So seems my next step is to consult my current FS and see what his opinion is and then decide what to do. Thanks guys for your help.

[melbel]

Was that result from the blood tests or the biopsy? I had/have a 36% NK level on biopsy, my blood levels were normal however. So I am on 25mg prednisone and 20mg (?) of clexane daily from O date till at least 12 -15 weeks if get a pos HCG. The hardest part is having to wean off between cycles as you have to wean off prednisone very slowly so as not to get adrenal shock.

I am surprised by Gavin's response in terms of treatment but then it may be different because I am in a different state. he seems quite happy to liaise with my specialist down here re dosages etc.....

[Dutchie80]

Hi CPie, Im sorry I have no advice to offer you I just wanted to wish you good luck. Having a result like this must be a real shock to the system, I really hope that between you, Dr L and Dr S you will be able to form a plan that overcomes this issue.

[Cuddlepie]

Melbel, thanks for the info, mine was just from the blood test. Haven't done a biopsy yet, given my result, I guess straight to the treatment plan. Just couple of questions, I thought the treatment is from ET, so you have been on since O day, are you trying naturally or going through IVF? Also I notice both BW and you mentioned 'wean off' prednisone, does it means that you need to reduce the dose gradually after TWW? Do you need a break between cycle then in order to do that? Will you be on the same dose throughout if you are pregnant then? Gee, it is a lot to digest.

I guess my FS is SIVF which is the sole competitor of IVFA, so maybe why? I don't know...

Anyway, my FS called me at 8.40pm and said that I can still start the cycle and we can work it out the treatment for this issue in the meantime, as I am seeing him next Friday. He also said there are some research about the reliability of NK cells in blood affecting implantation issue, I will get all the details next Friday when I see him. I feel a bit better at least I can start this cycle so not another slip through...

[Sara69]

CP, think this is a really good way to work with it. for this cycle.

Sara

[butterfly_warrior]

Yep, the prednisone needs to be reduced gradually, whether you stop it after the TWW with a negative or continue it through pregnancy with a positive. Generally you'll be reducing the dose by 5mg per week and going from there. The longer you've been on it, the harder it can be to reduce the dosage... I'm having huge issues at the moment, but I think that relates more to my other health problems.

Honestly, regardless of how reliable the research may be, if this has come up as a problem, I'd be trying the treatment. I don't think you've got anything to lose by giving it a go, and you could very well have a lot to gain.

BW

[Hollybolly]

CP - Don't be put off by Gavin's 'vagueness' of wanting to get too involved whilst you have another FS

I know with Lou when we both went to see him - he had so many ideas but kept repeating that it wasn't for him to step on other FS's toes, or muck around with their cycle protocols... but he would be more than happy to advise & consult if the FS was willing.
When I went to see him & he figured out my issues - he told me what he thought I should do but said the same thing about not stepping on my (at the time) FS's toes as well.... as soon as I explained to him that we would be changing clinics & cycling under him from now on, it was like he just went 'Well, let's bring it on then!'

For my upcoming cycle, he's been extremely thorough & gone over with me a number of times exactly what I'll be taking, exactly why, and exactly what each drug etc will do - and what he's hoping to achieve in each stage of the cycle from the beginning to the end of the 2ww... and hopefully further on into a pregnancy...

I'm with BW - I'd personally switch - but I'm bias & I love Gavin

It sounds like Dr L is open to discussion about looking into it further - wait until your next appointment & see what feel you get from there.... if you feel as though you don't think everything is covered, perhaps look into things further with Gavin from there.

Good Luck hun - and as much as its another thing to deal with on this horrid journey, its fantastic you have some answers... it can only bring you closer to your goal

Lots of love xxxxxxxxx

ETA - I can second everything BW has to say on the side effects of prednisone.... I've got a constant ring around my middle thats horrid ..... something easy to live with & even easier to forget about when you have your little one in your arms though, so it'll be all worth it hun xxx

[melbel]

Sorry CP......I have been taking prednisone from 2 days after O day....made a mistake there. we are doing IUI this month while we regroup our finances after paying out $2500 in vets bills over Easter so what we did was start the prednisone 2 days after insemination which was technically O day. Lyndon said this would correlate with a normal 2 day transfer day...so you are correct it is ET day not EPU day........I have been reading a fascinating book by Dr. Alan beers who is the man who pioneered this work. He even reccommends prednisone for up to three months before conceiving as he believes it improves the egg quality as well. he explains in detail how the NK cells affect the quality of the top layer of eggs in the ovaries....is very interesting stuff. so with that in mind, if we are not pregnant this month I will only be weaning back to a 10 mg dose to test his theory out somewhat.....I also have a nasty shoulder injury that needs some attention with cortisone/prednisone so my regular docs are happy for me to this in the shortish term.

When I weaned off after the miscarriage in Nov, we cut back by 5 mg a day till we were down to 5mg then 5mg every second day for a few days then 5 mg every 3 days for a few days and then off...worked well...took two weeks all up to wean off them. I think because we had only been on them for four weeks it was easier to wean back....if you have been on them for longer you would have to reduce more slowly......

[dusty]

CP I hope you don't mind me crashing your thread, but I wanted to ask the ladies that use prednisilone, particularly for NK cells but more genereally for other reasons to help a cycle, why is it used? It hasn't been made clear to me by FS as to its purpose and how it assists the body.
I used it as a teenager for controlling severe asthma (and the side effects in puberty were horrible both physically and emotionally, but I believe it saved my life) and have some personal psychological issues to overcome to using it again IYKWIM. But seeing I may be faced with a similar situation to CP I would be interested to know.

[butterfly_warrior]

I don't think I paid enough attention as I was basically stuck on prednisone for my arthritis and needing it or not for NK cells was pretty irrelevant. But, prednisone basically suppresses the immune system (it also works on inflammation). The NK cells (and my arthritis) are basically a result of an over-active immune system and the prednisone essentially squashes the immune response and lets things become a bit more normal.

Someone who paid more attention to the NK cell issue may have a better answer for you, though.

BW

[melbel]

Pretty much what BW said. Prednisone suppresses the immune system which helps to stop the NK cells and other immune cells from setting up a response. In my case with my shoulder inflammation it fights the inflammation by suppressing the immune cells that cause the inflammatory response. The theory behingd Dr. Beers works with Nk cells also goes as far as egg quality. he has shown through his research that NK cells emit a substance that 'stain' the eggs and they show up a red wine colour under the microscope...he believes this chemical affects the quality of those eggs so if we suppress the immune for 3 months at a low dose we can shed those 'stained' eggs and get to the really fresh ones underneath. BW uses prednisone to suppress the immune system that causes the inflammatory response that causes her arthritis.....I also have mild arthritis in my finger joints and am starting to notice much freer movement this week.

The downside is that because it suppresses the immune system you may be more vulnerable to colds etc....I personally have not noticed this to be an issue but I believe it could be for some people.....so they can sometimes advise you to avoid large crowds etc when you are on high doses of it.

[Cuddlepie]

Dutchie and Sara, thanks for being there me...

BW, I totally agree with you about 'nothing to lose', I am all for the treatment. Given so far, I am still in the 'unexplained infertility' basket, I am not going to let anything slip through the crack.

Holly, thanks for making me feel better about his 'vagueness'. I realized afterward it might be one of those 'unsaid rules' within the industry...

I am seeing my FS next week, I do like him and he is really nice about anything I brought up (including tests did else where ) I do think he is very diligent and good for what he does. So I hope he can provide me some sounds plan of attack.

BTW, are you on Prednisone for the same reason or due to other issues? About side effect, yes, I've already have a nice tire wearing around my waist, so more padding will be lovely. Another loads of clothes on ebay then...

Melbel, thanks for the clarification and glad you mentioned there is some benefit after all for this horrid drug. At least it will help with the egg quality. Do you have to have a complete break from IVF when weaning off it? Like no overlap period between FSH and Pred.?

Sorry to hear your loss last November, I hope you find out the reason or is it due to the dosage of Pred.? (don't have to answer if you don't want to hun..)

Dusty, don't worry about crushing this thread. Your question is also helping me to understand all these. TBH, suddenly facing something completely new and knowing so little, I am even having trouble to form my questions to ask. So ask away hun!

The general recommendation Dr.S put through to me is "Immune Suppressive therapy", which involve Pred. So what BW and Mel explained perfectly. When I mentioned that 'I am going to take steroid' to DH, he said its quite common, a friend he knows takes it for his sinus and his step father also takes it for his should pains.

I am not looking forward to add another drug to my list, but like some of you said, at least I will be doing something different this cycle and that gives me hope.

[butterfly_warrior]

Cuddlepie, the prednisone will not interfere with the IVF drugs at all. I started taking it in May of 2007 just after our first stim cycle, I have been on it continuously ever since at varying doses through two more stim cycles and four FETs.

The prednisone was suggested by Dr S, but prescribed by my rheumy for my arthritis (I just adjusted dosages at different times of my cycle) and my main FS didn't give a hoot that I was on it at all. I was on it the entire way through pregnancy as well, it simply won't interfere with what else is going on and could very well help a great deal.

BW