Experiences of high natural killer cell treatments for infertility anyone?

(25 Posts)
TTC78 Sun 06-Jul-14 12:24:50

Hi Brennac
Realise you posted a while ago but jst to let you know that I also went to see Mr Shehata after 4 mc's and being told by the NHS it was just "bad luck".
I ended up having 6 mc's in total but now have a healthy happy 7 month old DS which I 100% believe was down to Mr S and his treatment. It was a really emotional ride but totally worth it.
Good luck xx

seaviewasia Fri 10-May-13 22:59:37

Manda & Givemeaclue - Thank you for telling me your stories & good outcomes. It's so heartening to see positive outcomes.

Givemeaclue - Twins fascinate me. So happy you got your positive outcome on Humira. Just sorry it was such a long road to get there.

Manda - You did make me LOL at MrT's dodgy stuff and you banging the door down... a really welcome belly laugh grin as today argy called me to say I test positive for TB - most likely latent TB as I have no symptoms. This will likely delay my ivf till close to end of the year. I really don't want to wait as it will be 4 years of TTC by then. I am tempted to go for a regular IVF without the immune treatments (humira for cytokine). I have never done an ivf cycle before.

You are a brave lady for doing so many rounds there as I know it's incredibly tough. I am just so happy you got your lovely family. smile

Manda472 Fri 10-May-13 19:24:52

Seaview our story was the same as most couples....unexplained infertility hmm I came off the pill at 30 (been together since we were 19) and nothing so had all the normal stuff with nothing found. 4 goes at clomid and 2 at iui-all nothing. Told the nhs waiting list was minimum 18 months but try a private go if u want. I had a routine blood test done as a finish off and the results showed I had raised fsh. At the time this meant nothing but once I googled it I went into meltdown. We decided to go with first available clinic and was seen by the bridge centre. They were of the opinion that if we wanted to try then fine but they needed a minimum of 3 follicles to get to egg collection. I had 1 hmmhmmhmm we insisted on going ahead even with just that and I think they were more surprised than us when it worked!!! I was 34.
On his 2nd b'day we tried again and went on to have 5 fails with the bridge and it was probably time to walk away. Then Mr T was all over the papers with his dodgy stuff that was getting ladies pregnant, well we were banging that door down grin My results showed I had raised nk's.
On both goes with him having IVIG and steroids we got the first BFP's since ds but I think the embies just weren't good enough as I was now 38/39. We also defrosted some embies from previous goes. We are now on go 9 and physically my body could do no more and I had enough of my son sitting beside me as I injected and seeing me in floods of tears.
I was a regular on fertility friends at that time and got chatting to ladies who had and were having donor cycles and it helped me get my head around it. So that's what we did and we got our dd on our 10th go!!!
If we don't mention the money (every go was self funded shock) I don't regret a thing and love both my babies equally-ds is 8 and dd is 2 and often forget dd's start in life.
I certainly don't regret having the immunology stuff with Mr t and my only regret there is that we waited too long in seeing him. They really are a fantastic clinic, not the best surroundings but that's not what u are paying for.
I still find it hard to believe we did all that and survived. Would do it all again tomorrow x

givemeaclue Fri 10-May-13 09:12:13

Seaview, yes I have twins from my cycle with humira (not at agrc), which was my fourth cycle. Previous cycles failed for different reason every time.

seaviewasia Fri 10-May-13 00:46:02

givemeaclue - I think some other clinics will give intralipds but argc still prefer humira for high cytokine. Did it work for you?

manda - I can imagine it must have been heartbreaking to get a bfp and for it to end in m/c. Do you have any regrets about doing the immunes ivf with argc? Do you mind sharing what your fertility situation was? I'm guessing from your posts it worked with donor in the end. I'm happy you got a good outcome in the end. smile

Solars - I wish you well too and I hope the ivig works for you if you decide to go for it. Still waiting for tb results. Humira treatment takes about 1 month (2 injections 2 weeks apart), they then have to test my immunes again so my ivf will be delayed by at least a couple of months. sad I feel like I have waited so long already. Hopefully the Humira works because if it doesn't I will need a second round of treatment which means more delays. Good luck with your treatment. I would really like to hear your experience of it if you feel able to share.

Solars Thu 09-May-13 12:02:39

Seaviewasia good luck with the tb result and also with the humira. How long after humira can you start your cycle?

You're exactly right Manda I'm scared but a little bit excited too!

Manda472 Wed 08-May-13 21:33:18

Seaview we had 2 fresh goes with them and on both goes we had a BFP but sadly both ended in m/c hmm
Part of me does think had it been a natural cycle or an ivf go with no immunes it prob would have been an bfn but my body allowed possibly dodgy embies to implant but then weren't strong enough to carry on. Whatever the reason it was crushing, much worse than a bfn, to be so happy one minute then bam hmm
That was why we decided in donor in the end, I just couldn't go through it again.
X

givemeaclue Wed 08-May-13 21:10:40

Well humira worked for me but h thought had been replaced with something else

seaviewasia Wed 08-May-13 20:22:48

Hi ladies, I hope you don't mind me joining. I too am new to immunes.

Solars - I think our story is quite similar. We have been ttc for more than 3.5 yrs, also not a whiff of a bfp. I have had 2 IUI and now on a cycle monitoring with argc. My immunes test showed that i have elevated cytokine. I have just done my tb test and hoping i can start on humira once i get the all clear.

givemeaclue - if you had humira I think it was cytokine levels.

I think there are a lot of unknowns in terms of drugs for immunes unfortunately.

manda did you get pregnant with the immunes treatment at argc?

Manda472 Wed 08-May-13 18:13:56

My first go worked 9 yrs ago-no extras just bog standard ivf. When we started trying again and failing I realised that exactly a wk after ET I would feel like i was getting flu. Skin was sore to touch, headache, couldn't get warm etc and then the next day nothing. I was thought that it was at that point I had killed of the embies. Which is why we went to mr t x

givemeaclue Wed 08-May-13 17:12:40

I had immunological treatment on my fourth cycle of icsi (the one that worked). Didn't have high killer cells but had high something else (how come I can't remember?). So no ivig but humira(£400. Per jab). However this has now been replaced with something else not humira.

I think it is worth getting tested, check whether your medical insurance covers the tests, ours did

BlindKitty Wed 08-May-13 17:06:39

This is all very interesting... I've always prided myself of my good immune system, now I'm beginning to wonder...

Manda472 Wed 08-May-13 15:12:05

Best of luck to you x i remember only too well how u are feeling....scared but probably a bit excited too
One of the good things about Argc is the good support network there is. I was previously at the bridge centre and nobody even made eye contact with each other confused
Argc is totally different, once you start stimming you will be going daily for bloods at 7.30 so u quickly recognise each other in the queue at the red door. I made some very good friends on our first go there in 2008 and still class them as such. We all went through so much together, and sometimes that's what you need xx

Solars Wed 08-May-13 14:16:18

Manda thank you, I have been reading the immune stuff on ff, it's very comprehensive and may post on there too asking about my results. We haven't started tx yet but about to next week, hopefully when AF arrives and all my day 1-2 results are ok. We did speak to a friend who is also a consultant gynae who said the same as you that Mr T wouldn't suggest IVIG lightly. Thank you again.

Nordicmom Wed 08-May-13 13:21:31

Hi !
I was on this treatment and unfortunately I was very unlucky to not only to not have a successful pregnancy but 3 more miscarriages and on top of it all the steroids distroyed my health by resulting in my adrenal glands stopping working and after about 9m I was diagnosed with Secondary Adrenal Insufficiency by an endocrinologist . This is over 3 y ago and it doesn't seem temporary but rather a chronic quite serious lifelong illness. Ironically the treatment is more steroids and painkillers etc I'll be on for the rest of my life . We now have a second child through gestational surrogacy . I wish I would have been aware of the risks of steroids and I would have never taken them .
It does work for some women though so that's why I did it. Good luck !

Manda472 Wed 08-May-13 13:01:22

Solars if you also go onto fertility friends forum you can post your results on the Argc section and u will find loads of lovely ladies who can tell you what they think.
I think with the IVIG thing for us it was a last resort, I had had a positive but the hcg was low and they hoped it would kick start me off.
I truly believe that unless yours is way off the scale if you have a good embryo it will be strong enough to stick. We got our dd through donor egg as years of tx had taken its toll. Would it have still worked without the steroids....who knows hmm
But saying that when you are in that situation you will do/pay anything to get that BFP. Mr T is a very good doc and from my experience he doesn't give IVIG lightly. The cost is a factor, we paid £1500 for just the IVIG shock and also it is a blood product so there is the potential for health risks.
Have u started tx yet?

Solars Wed 08-May-13 12:20:27

Oh Manda I hope you don't mind me jumping in and asking a few questions. We are at argc at the moment and I got my immunes results back last week and we were advised IVIG during our icsi. I asked for a copy of the immunes results and from what I can tell only a couple of my NK cell values are only just above what is considered normal for fertility, both DH and I, at the time, thought wouldn't the IVIG just be overkill. Quite likely to start ivf next week when AF arrives but now that I've seen your response I'm a bit uncertain about IVIG again with borderline results. We've been trying for 3.5 years without a whif of a BFP, was this the case with you? Or did you suffer from mc's?

Hope you don't mind me jumping in Brennac good luck to you!

Manda472 Wed 08-May-13 09:34:20

Hi I'm an ex patient of mr shehata and also mr taranissi at ARGC. My nk results were mainly just over borderline and when I was with ARGC I had IVIG a couple if times. When I moved to mr Shehata he felt that the nk cells weren't high enough at that time to warrant IVIG so I was put on 25mg of prednisone and yay we have a 2 yr old dd smile.
My story is quite long hmm and in total I had 10 ivf goes, first and last worked. When you are going down the nk cells road it can make things very expensive so I'm glad for you that he has put you onto predisolone before trying other stuff.
Have a look at the fertility friends forum as there's a whole section on immunology. Don't give up, mr shehata really is a good man.
If you want any more info ask away xx

Brennac Wed 08-May-13 09:21:12

HesterShaw, no halm in asking. The least that they can do is test your nk cells....at least then you can see whether this is worth exploring further. Good luck

HesterShaw Thu 02-May-13 17:59:30

This is interesting. I'm have fertility treatment at the moment after ttc for three years without even the sniff of a diff. I very rarely get colds or other illnesses and also have quite strong allergic reactions to an unknown thing every so often. My first round of iui was just unsuccessful. I wonder what he'll say if I mention it at my next appt.

Brennac Thu 02-May-13 16:36:16

Hi Blondebaby, sorry for the delay in coming back to you. No it wasn't diagnosed on the NHS, to be honest I found the NHS to be pretty hopeless if it was a case of just 'unexplained' infertility. I tried a few private consultants and I am very happy to have been recommended Mr Sheehata and the Miscarriage Clinic (I know it can be misleading if you haven't got miscarriage issues but he also treats infertility). If you google him you can find quite a bit of information about him. It seems that this field is pretty new so there isn't much around there about it which is why it is difficult to get diagnosed or treated if you are not speaking to the right person.
Anyway, in answer to your question, yes, it is called a condition related to your Natural Killer cells which is exactly as you describe, the body seeing the fertilised egg as a foreign body and attacking it. it can stop implantation and also cause repeated miscarriage, so if you are having trouble getting pregnant due to this condition, it may be that if you do get pregnant...it is an increased chance of miscarriage. However the treatment I am on is to protect against this and also increase my chances of pregancy. I am on a superovulation programme which means I produce more eggs each month to increase my chances, then on steroids which are treating the NK cell issue. In addition Vitamin D3 is a very good natural support in balancing your immune system.
I also never get ill. My boyfriend can have the most terrible colds and I never ever get them!!!

blondebaby111 Mon 22-Apr-13 21:30:00

Hi brennac, I can't help you with your question but I'm wondering if u could help me with something. Was this not diagnosed on the nhs and do u have a really high immune system. We have been trying for 5 years and just about to have ivf round two. My dp pointed out to me that I'm never ill not even so much as a cold and we were wondering if my body kills it al off before its even begun. Have thought about questioning the nhs about this but not sure if I'm wasting my time. Is this what its called..natural killer cells??

Brennac Mon 22-Apr-13 16:06:44

Thank you so much, I will check it out x

keepitgoing Mon 22-Apr-13 15:12:03

Hi, there's a thread called 'TTC on prednisolene or similar', lots of ladies in the same programme.
Good luck!

Brennac Mon 22-Apr-13 13:54:26

Hi there
I'm new to this forum, and forums in general but I'm hoping someone can give me a positive story on this subject or some general advice as I'm feeling a bit down at the moment.
Have been ttc for 2 years with no luck and had Dr Sheehata recommended to me after getting nowhere with the NHS. I have been diagnosed with borderline high natural killer cells and I am now on a super-ovulation programme and an immune treatment programme which combines Letrozole and Prednisolene.

Its my second unsuccessful month on this programme and only early days I know, but I am hoping that someone out there has been through the same and can tell me their experiences on it!, did it work? I need some positive vibes!

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