Fertility Friends Support Forum banner
1 - 19 of 19 Posts

·
Registered
Joined
·
307 Posts
Discussion Starter · #1 ·
Hi All

Had a call from clinic today to say once I start stimming I will need to take steroids and also intrapilids.  I asked why not IVIG and the lady said, it could be IVIG.  Does anyone know the difference at all.  I was told I have elevated NK cells.  I've been looking on the internet and it says there is no research to say that intrapilids actually work.  Just wondered if anyone knew anything at all.

Thanks so much.

Jane
 

·
Premium Member
Joined
·
7,539 Posts
Hi Crookers

I'm not exactly sure why they would choose one treatment over another - I found this American Research paper on the use of Intralipids as opposed to IVIG which makes interesting reading http://www.goivf.com/docs/ivig_intralipid.pdf

Both can be used for treatment of elevated NK cells and I think IVIG has been used for much longer. The main benefits of intralipids appear to be:

1. Lower cost
2. Soya not a blood product (I know IVIG bothers some people because it is a blood product)

I'm not sure whether the ARGC make the decision based on how elevated your NK levels are? or whether there are specific types of raised NK cells where they would use one product over another, but it may be worth asking.

This link on the Immunes board may also help http://www.fertilityfriends.co.uk/forum/index.php?topic=211368.0 - it may also be worth posting the same question on that board - there is a lady called Agate on there who is very knowledgable about immunes and may be able to help.

Karenanna xxx

/links
 

·
Registered
Joined
·
307 Posts
Discussion Starter · #3 ·
Hi Karenanna

Thank you so much for the two links you sent to me - am going to have a good read of them. 

I will ask at the clinic why they chose either intrapilids or IVIG, the lady did say intrapilids though, and then when I said about IVIG, she said it could be IVIG so will wait and see.  I don't mind either but obviously want it to be effective.  I wonder if it is to do with how much over the normal level you are - again I will ask when I go in next.

Really appreciate your response.

Hope the boys are doing well!  :)

Jane
 

·
Registered
Joined
·
61 Posts
I have been doing a lot of reading  on both.

IVIG, being a blood product, not only carries a (very remote) risk of blood-borne deseases, but can also cause some serious complications. It has been used for longer period, so more proven, but some doctors consider IVIG to be an old treatment and prefer intralipids, that are cheaper and much safer as well. From what I read, many believe they are just as effective.

One of the reasons ARGC would recommend Intralipids over IVIG is if you have low Iga levels, this is hte case when IVIG is not offered. Intralipids do not have this restriction. Both are used in case of elevated NK cells, but the clinic typically look for a certain level before prescribing those. I was borderline, so they decided on steroids only in my case. Because of low Iga I was not eligible for IVIG anyway...

 

·
Registered
Joined
·
209 Posts
I didnt realise the argc were now doing intralipds? When did they start? How much are they v ivig?
 

·
Registered
Joined
·
61 Posts
Apparently around £300, which is so much cheaper than IVIG at £1200-1300
 

·
Premium Member
Joined
·
7,539 Posts
Hope297 said:
I didnt realise the argc were now doing intralipds? When did they start? How much are they v ivig?
They have only started recently after much lobbying for their use - I think Mr T needed to be convinced of the evidence that they were effective - studies into their use are still only very small.

Not sure how they choose which treatment is best for who, but I would go with whatever Mr T recommends - afterall he does have the best results in the country.

Karenanna xxx
 

·
Premium Member
Joined
·
6,864 Posts
Hi all

I'm assuming they do an NK assay, like Dr Gorgy does, although unlike the usual one, they run it vs IVIG AND Intralipids, the results are compared and that's how they know which one to use

Love to all
xxx
 

·
Registered
Joined
·
959 Posts
Hi i got my nk assay back today and it was the same format as a few months ago - ie no comparison to IVIG or IL. I was told to have IL. i dont know why MR T choose IL - maybe it was coz only a few of the ranges were only slightly high? Im happy anyway as less money :)
 

·
Premium Member
Joined
·
6,864 Posts
Hey NJO that's interesting. Maybe they're just using the IGa criteria then ??? In any case, I'm always happy when it's gonna cost less money ;D ;D ;D

xxx
 

·
Registered
Joined
·
959 Posts
yea exactly, im assuming it is because i was borderline - maybe if they would have been sky high they would have advised IVIG but like you said much rather pay a few hundred rather than £1500. anyone know how much IL are? maybe about £300-£350?
 

·
Premium Member
Joined
·
6,864 Posts
I think it's 300, sooo much cheaper than poxy IVIG! :)
 

·
Registered
Joined
·
14 Posts
I had IVIG at great cost at ARGC while other women were having IL.  IVIG seems more expensive but you have to have IL more often, so it really works out the same .  Think you have to have IL every 3 or so weeks.. ???
 

·
Registered
Joined
·
549 Posts

·
Registered
Joined
·
263 Posts
Hi - I'm having intrallipids tomorrow. I'm on Day 7 of stimms on a short protocol - can anyone advise me whether I might have to have them more than once?  :)
 

·
Registered
Joined
·
549 Posts
Hey Squiffy - I am not sure how long intralipids keep acting for but with IVIG they check your immunes again 3 weeks after you have had the last dose. I suppose it may be similar with intralipids (though fortunately not quite as costly!!). When I was last having IVIG they said Mr T was using intrapilids more and more (just over the last few months really).  I've had 4 sets of IVIG and breaking into the mortgage to pay for it now! Not that I resent any of this but it's not great for the wallet.

Wishing you loads and loads of  ^reiki^ ^reiki^ for this cycle.

Tabith xxxx
 

·
Registered
Joined
·
263 Posts
Thanks tabith! Not only has ff been a fount of info on this, but my acupuncturist explained how it works. Should've been Argc but we all know how crap they can be at getting back to patients and explaining things!!

Xx
 

·
Premium Member
Joined
·
6,864 Posts
Squiffy - you asked the clinic this question and they refused to answer???  Or did they say they can't tell you that yet? If it was the latter, I suspect they meant what Tabith ^wave^ said, which is that it will depend on any follow-up immune testing....  It's flipping frustrating I know and sometimes it may seem that information is being withheld deliberately, but to be honest it's not really possible to predict how anyone will react to immune tx - or any tx if it comes to that...  :-\ They're not doing it on purpose, honest  :)

Good luck with your cycle hon!

xxx
 

·
Registered
Joined
·
263 Posts
Hi nix! Hope you are well x

No I meant that I got a voicemail to say that I would need it, then I phoned back to ask why etc how much etc and someone was meant to call back but didn't. So I ended up going for a procedure I had no idea why or how much it would be and they were so busy that morning that there was no proper nurse to ask and the reception staff were too harassed to help.

This forum and my acupuncturist reassured me, and at this point I just trust the Argc.

Not really complaining just musing on the chaos!

Xxx
 
1 - 19 of 19 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top