Ivig drip

[TheTroublesomestTribble]

I have a diagnosed autoimmune condition, and have experienced many miscarriages.

I'd like to try an ivig drip, but really not sure where to go for this. Would the NHS offer it? Or would a private clinic agree to just give me the drip when I don't actually need any other treatments (ivf etc)

I'd appreciate it if anybody could share their experience please.

...also, how much did it cost?

Are you in London?
Dr Gorgy is who you should look up. He’s on Harley street. There’s a lot about him on fertilityfriends.co.uk
Ivig is very expensive £1500 a drip unfortunately and you need them regularly (I had every 3 or 4 weeks until about 20 weeks). You may only need steroids. Nhs won’t do ivig but might do steroids. I’m not sure how any of this works without ivf.

Thanks very much for this information, I've made a phone appointment with Dr Gorgy to discuss the issues.

Many thanks!

So, having clearly explained that I only want to have the IVIG drip, Dr Gorgy happily took my £225 only to tell me that unless I spend a further £2,600 on tests, he's refusing to prescribe me the drip.

I'm absolutely fuming - what on earth is the point of spending £2,600 to see if you need to spend £1,500? (and charging me £225 to tell me that )

The drip is harmless, so why not just go straight to that? The worst that can happen is that it won't work, surely?

Am I missing something?

Of all the boards to post your spam on, why, for the love of god choose this one?

Have you no shame at all?

A doctor wouldn't be doing his job properly if he just gave you ivig. What if you had a terrible reaction & he hasn't given you a thorough work up? He could be struck off. And they aren't harmless, people have allergic reactions to ivig. You know it is human antibodies. Unless your antibodies are low there is no need for it anyway.
Private doctors are expensive, what a surprise!
I hope you can get some help, but you will have to expect to pay for it if you want a presumably off licence treatment.

I think that's common, it's hard to get intralipids for eg unless you pay for Chicago bloods first, a lot of immunology isn't available empirically and a lot only prescribed alongside an IVF cycle.

The Chicago tests won't reveal anything about potential allergic reactions though - if that were the purpose, I would completely understand.

As far as I can tell, it isn't a safety issue, more to determine whether they will work for me or not.

Obviously happy to pay for the drip, but I can't see any benefit to having the Chicago tests first. I'm happy to take the chance that they won't work.

Can't help but think its all a bit of a money spinning con

I was just using needing Chicago's to access intralipids as an example I wasn't saying it was relevant to your situation, I wanted to try intralipids years ago and couldn't without having the Chicago's, they came back raised NK so they allowed me to have them

You are at high risk of severe allergic reaction to IVIG if your IgA is low, if that was the case they wouldn't prescribe it at all, tests aside not sure how practical it is to have them monthly whilst TTC naturally.

My point is, if you go straight to the IVIG you have 2 possible eventualities:

1. You did need the drip, it works and you're £1,500 lighter.

2. You didn't need the drip, it doesn't work and you're £1,500 lighter.

Spending £2,600 on precursor tests isn't going to change the above 2 outcomes, or give you a third (or fourth) outcome.

Do you see what I mean?

You are at high risk of severe allergic reaction to IVIG if your IgA is low

Which is why prophylactic Anti histamines are administered as standard.

I'm not sure IgA is even part of the Chicago tests (happy to stand corrected on this one though)

Sorry I did mention twice I was using needing Chicagos to access intralipids as an example, in the way you have been asked to pay for testing to access IVIG. I wanted intralipids but had to pay for Chicagos to show elevated NK for the Dr to be able to prescribe. Immunology is expensive and largely unproven but some is available empirically. Yes correct about the antihistamines but doesn't mean if you were in a high risk group that would mean they would let you

If you want to try these things I think you just have to weigh up how important it is to you to try it when a lots unproven, check out Agates posts on Fertility Friends immunology board and also look into PGS testing. Good luck

Not sure what the tests are that cost £2600. I had argc immune tests and I think they were about £900. But they keep repeating them, so you get the test they give IVIG depending on the result. Wait 3 weeks you test then get IVIG etc all the way until 20 weeks pregnant. It’s crazy expensive and I still had a miscarriage after having had 3 IVIGs. Didn’t have a miscarriage second time around.