Anyone know about IVIg Therapy and can you get this on the NHS?

[wen10]

I have been looking into various types of treatment and wondered if any of you have used this tpye before, it is widely used in the states for people who have problems with early mc's and implantation problems and have elevated Natural Killer cells in blood but not sure if it is used here in the UK?

Thanks
wenXXX.

[needmorecoffee]

I've not found anyone who has heard of it here. the SN lists in the US have it used for epilepsy and what have you.

[wen10]

Thanks anyway, perhaps someone else later on might have come across this.
wenXXX.

[minster]

No you can't get it on the NHS.

I've had it twice - unfortunately it didn't work very well for me.

Clinics who use it include the ARGC, Lister & Care in Nottingham.

[pruners]

Message withdrawn

[minster]

Yup the dose you're given depends on your weight - I had 24g which was about £1100.

[wen10]

Thanks for your replies minster and pruners,
it sure does sound an expensive treatment!!! I think it is widely used in the states but i guess that's because most have medical insurance. Because i have rheumatoid arthritis (antibodies attacking joints/tissues etc...) i thought it might be a solution to help the embryo implant. I am beginning to wonder though whether i have to accept that maybe there is no answer to all the early m/c's i have had and that it's just not going to happen!
Thanks again.
wenXXX.

[Deux]

I've had it as well. I had 2 infusions, one 2 days before embryo transfer and one at 6 weeks pg. Initially I wasn't very keen to have it and I certainly wasn't under any clinical pressure to have it. The clinical evidence for its effectiveness is scant so it's not available on NHS. That said I do know of someone with a sympathetic GP who converted her private script to an NHS one on the basis that it was a treatment for recurrent m/c.

Not sure about the other clinics but the Lister don't administer it so they don't make any £ from it. They send the script to Healthcare at Home and a nurse comes to your house and administers it. You pay HAH directly, not the clinic.

I had my NK cells tested through the Lister clinic and they came back as significantly elevated. I did 2 cycles just using high dose steroids - one chemical pg and then a missed m/c. Next cycle we decided to roll out the big guns and added the IVIG - my test results showed that it had a significantly greater killing power than steroids.

My son was born as a result of our first ICSI tx and thereafter followed 3 bfns, 4 chemical pgs and 2 missed m/cs. Then the IVIG cycle. In addition to the IVIG we also did PGS for aneupoidy. I am now 21 weeks pg, so still early days.

For me, I feel absolutely that i would not be pg without it. The PGS absolutely has an effect too but I feel that the IVIG has been significant in the pg continuing as I didn't seem to have any problem becoming pg, just staying pg.

In all of my cycles following my son I had a peculiar set of symptoms in the 2ww and early pg. A weird shivering and sneezing but no fever - now I realise considered classic immune response. I started to get these again about 3 - 4 weeks after my first IVIG and sure enough my NKs were elevated again. Haven't had them since the second infusion. I mentioned these weird symptoms to my first clinic and they dismissed them as irrelevant but the Lister didn't.

If you do go to the Lister ask for Dr Yau Thum - he's the expert there. If you google him you can see some of his research.

A good book if you haven't come across it is 'Is your body baby friendly?' by Alan Beer - well worth a read and explains it all. Also if you log onto www.fertilityfriends.co.uk you'll find lots of women who have had immune tx and have a lot more knowledge than I.

Any other questions I can help with, do shout.

[wen10]

Thank you so mcu for replying, i really hope it works out for you.
Are you able to tell me the cost of having the IVIg therapy and seeing Dr Thum, no wories if it's to personal? What does this mean icsi tx and pgs? Sorry i am fairly new to all of this as up to finding this site i thought i was going to have to give up as had 7 early m/c's and 1 mmc over the past 22months but now i feel that ther might actually be some hope that something will work. I get pregnant each time but i just cant hold on to it!
Can i do it with my husband and i or do they have to remove my egg etc and place back in my womb as i see you mention embryo transfer?

Were you not scared having to be at home when you had the infusion and not under medical care at a hospital?

Sorry for so many questions but im desperate to find out as much as i can to get the process rolling.
Thanks
wenXXX.

[minster]

wen10 the infusion isn't a big deal - I had them at the clinic but would've been happy to have it at home. You take benedryl before hand incase of an allergic reaction - at my clinic they check your IgA levels before as well because you shouldn't have it with low levels - the infusion itself last about 4 hours (i.e. very slow) & whether you have it in the clinic or at home there's a nurse with you checking your BP etc. I didn't have any adverse reactions to it (you're not aloud to donate blood if you've ever had it though - there is a theorectical risk of infection).

I lost the pregnancy I had it in (placental abruption) but carried my ds to term without having had it (went for steroids instead).

[wen10]

Thanks minster for you reply, am so pleased all worked out for you without the IVIg in the end. Im already on steroids for my arthritis which have not made a difference at all to me being able to hold on to the pregnancy!

My predicament is:
do i go to LWH or ARGC do get tested for NKcells or Dr Shehata at Lister.
Also is the chigago test different from the NKcells test?

We dont have much money to mess around around with so i really need to make the right decision!!!

LWH dont agree with IVIg so i dont know what other drug/treatment they would offer but the ARGC might proove to costly if they want to do other tests alongside the IVIg.

Money really is a problem so i have to choose wisely!

Any thoughts?
wenXXX.