[Flopsy]

These are some of the current immune system modulaters used in conjunction with IVF treatment.

Please indicate if you have had a successful pregnancy using any of these methods or have had a cycle failure using any of these methods.

As far as I am aware Dr Beer ( and the ARGC and CARE clinics) use IVIG or Humira depending on NK/TNFa test results. Sometimes a blood thinner such as Heparin is also used.

Dr Shethata uses Steroids such as Predinislone.

Thank you! Any comments very welcome.

 

[MaryJ]

Hi Flopsy

I had IVIG twice during my last cycle after finding a fetal heartbeat - at 6 and 12 weeks. We got as far as 20 weeks before losing our twins. This might have been because on my double uterus and/or raised NK cells. The ARCG felt the IVIG helped me get that far.

I wasn't sure whether to click yes or no on the poll!

Best wishes,

Mary

 

[SueL]

Hiya

Not quite sure which to tick.......

4th and 5th cycle heparin - both negative.

6th cycle - heparin AND prednisolerone and positive....

I had my treatment had The Lister which also recognises NK cells but does not treat with IVIG or humira......

Love Sue
xxxx

 

[Flopsy]

Dear Mary,

I am so very sorry to hear about the miscarriage. I've added another category to the poll. Hope that this is OK and not worded insensitively.

I will change it if you would like to something else. Have a tummy-bug at the moment and not thinking straight.

Thank you for answering.

With warmest regards,

 

[Flopsy]

Hi Sue,

Wondeful news! Congratulations at your success at the 6th attempt.

Could you please tick the option Steroids and yes.

If we get a good response to this maybe we should have another one that includes blood thiners as well?

Thank you for your ansa.

With warmest regards,

 

[susanah]

Dear Flopsy

Sorry for nipping in, but I would just like to say thank you for adding this thread. Fantastic idea. I just hope that it gets a good response.

A big Thank you to all you ladies who have added details and to the ladies that will be adding to it.

Thanks

 

[flick]

Hi flopsy
i have ticked the humira and ivig initially ok but miscarried- i was also on prednisilone. I had my first HGC test on sat and had level of 88 but by mon this had fallen to 27 and i had AF a week later so when i say initially ok i mean very very briefly still it was further than i had got previously. hope that helps with this poll and well done on doing it. Thank you Flick xx

 

[Flopsy]

Hi girls,

I have just added my own failure to this poll and feel gutted. 2 IVIG's and steroids still resulted in failures.

Would be happy to continue for as long as my eggs are good and we run out of my DH's frozen sperm but the added expense from immune drugs makes this a terrible financial gamble.

Thank you to all who have contributed. I'll try to keep this poll onoing so we can get a general idea and hopefully see some patterns emerging.

With love to all from

 

[*Nic*]

Flopsy - have only just seen your post. So sorry that your treatment didn't work this time
sending you a big hug
I hope you get some good news soon.
Take some time to grieve and look after yourself.
Love nicxxx

 

[Pogo1]

Flopsy,

Really sorry to hear things didn't work out for you this time. Sending you a massive hug ^cuddleup^.

Take care of yourself.

Crystal
xxx

 

[flick]

oh flopsy- i am so sorry ^cuddleup^ we immune girls really have to struggle. it is very difficult F xxx

 

[Fee]

So sorry things didn't work this time Flopsy - heaps of hugs to you.

I've ticked successful with steroids. Not strictly true - as I didn't have IVF or IUI - but I fell pg for the first and only time whilst on prednisolone for bad asthma, and since joining FF and reading about its uses on preventing embryo rejection have often wondered if that is what did it for me?

I'll never know I guess

Fee xx

 

[Flopsy]

Dear Nic, Crystal, Flick and Fee,

Thank you for all your kind words and support.

Still feeling awful but early days yet. I still feel that we are/were on the right track but need time to heal and see if we can afford to continue.

Wishing you all the very best!

With love from,

 

[londongirl]

Flopsy - I am so sorry to hear that you have been unsuccesful this time. Just make sure you take some time out to recover physically and mentally. It is so hard isnt it?

I've filled in your poll - I had Humira, IVIG and Steroids so wasnt sure what button to hit - went for Humira and IVIG. Us immune issues girls really have a struggle dont we.

Look after yourself and your dh.

xVictoria

 

[enid]

Hello everyone on this site. Good to read your postings.

I've just had a meeting with Dr ******* in London and was told I have NK cells. We had almost given up on having further treatment as I am now 44. I conceived naturally April 2003 but miscarried very early on. I had IVF recently, which failed, but I had a very faint + reading for a few days. I read the Sunday Times article about *******'s treatments, which seemed miraculous in case featured, but reading everyone's postings here, it seems that treatment is not necessarily successful - particularly when you are my age. My FSH is borderline but oestradial is high. I responded poorly to maximum doseage of Gonal F during IVF, only producing 3 follicles, but luckily all fertilised - one egg being good, one fair and one abnormal.

We will now have to think about whether to have any further treatment or not using *******'s recommended medications. (We had decided to give up but thought I would have NK test just to be sure that there wasn't a problem there) I was sort of pleased to learn there was a problem, if it could be treatable, but now I realise the treatment programme doesn't always lead to a better outcome. Also, I am a bit worried that all these different treatments might just keep me going around in circles and I do wonder whether they are a bit of a money-making industry. I am sure all the doctors are sincere, but it is certainly a big growth industry...

Thanks for your postings and good luck to all of you.

xxxxxxxxxx

 

[Flopsy]

Hi Enid,

Thank you for your post. I think that you are right to question this whole topic but I don't think you will find many answers yet. The UK NHS does not accept the work of Dr Beer and Dr ******* but hope one day (year?) to carry out clinical trials.

This is a very unsatisfactory position for those of us with repeat IVF failures or miscarriages.

The immune aspects of infertility are unknown and doctors working in the field are pioneers. That can be said for the whole topic of immunology as I have had problems for over 20 years and always followed research.

Even with the immune modulating drugs from Dr's Beer and ******* my body still mounted an immune response (symptoms such as sore throat, glands, dry fevr and cough) at exactly the time inplantation should be occuring. My cycle was neg.

Time will tell hopefully if the doctors are onto a proven thing or if this method is only suitable for a sub-set of women. We are the guinea pigs.

Even the concept that these theories are based on - the TH1/TH2 responses - are controversial with some researching feeling that this is a poorly understood phenonomen in general - not just for fertility.

I have many unanswered questions and will continue to look into immune treatments even after it is all too late for me. For example, I do not understand the lack of "other "symptoms in most of the ladies with high TNF-a and NK's.

There will always be "one more theory" for us to chase in infertility, as there is no cure, and like many uncurable conditions, quacks can take advantage of us and part us from our money in sophisticated ways.

Personally, I feel that I am onto "something" with the NK theory as I have had a proven immune dysfunction for most of my adult life. Also I have had a similar immune response to my failed cycles.

I know of 2 ladies who were tested by Dr Beer and not found to have high NK activity. In my own case I was "lucky" to have lowish levels of TNF-a so I was different to many ladies he sees.

Sorry, I can't help further. At the moment we are still in mourning after our last failed cycle and uncertain if we can continue or not. Given my age (43) I would like to try everything I can, whilst I still have a chance, but that does not mean there is an open cheque-book.

Good luck! This is such an unfair and painful business.

with warmest regards,

 

[Ellie]

Dear Flopsy

I just wanted to say sorry for your sadness. I understand clearly the message you have written. It is such a long and arduous battle we are fighting and I admire your strenth.

Whatever your next step takes I wish you lots of luck and happiness

Ellie
x

 

[enid]

Dear Flopsy,

Thanks so much for your informative posting and so, so sorry for your loss. I am myself 44 and have had several early miscarriages over recent years. It is just devastating, particularly as pregnancy seems to come so easily to so many people. I hope you and your partner find a way through your grief and manage to come to the some conclusions about further treatment. Personally I feel there's probably not much hope for me as my hormone levels are going up. I think I'll keep trying naturally with the NK treatment, possibly using chlomid, but don't think I can put myself through IVF again with such low odds.

It was very helpful for you to put this NK treatment in its context and it's also good to know that you know of two women who were actually told they didn't have NK activity, as I was wondering if everyone seems to have it at some level.

I wish you and all of you reading this so much luck and love and send you my compassionate thoughts.

Enid xxx

 

[Flopsy]

Thank you so much Ellie and Enid,

For your kind words which brought a lump to my throat.  Very appreciated indeed.

With love from,

 

[Flopsy]

Hi girls,

Just bumping this up to trawl for some more responses.

Thank you to all who have contributed so far. I have an appointment with Dr Beer this week to go over our last failure and see what else I can try.

Lots of love, luck and babydust to all from,