Intralipids as an alternative to IVIG - 10% of the cost??!!!???!!!

[rjc0704]

Dr Stricker with AEB put IVIG x2 in my protocol to subdue slightly over active NKs (17.5 s/b under 15).

Does anyone know about Intralipids as an alternative to IVIG which costs I'm told only costs about $300 total for the treatment as opposed to $2000-$6000 for IVIG??

I know SIRM has switched to Intralipids therapy vs IVIG because it is just as effective and much much cheaper.

Does anyone know if AEB will let me do that
instead?? Dr. Stricker told me IVIG was about $2,000, but it could be much higher and I don't know for sure if Connecticare will cover it or if I afford it. I'm hoping they will pay or reimburse under the auto immune diagnostic code 279.4 - so far, they are starting to pay my reimbursement claims under that code.

[poohbear]

Rhonda,
Before intralipids I could have never afforded IVIG which is why I continued IUI's with 8 failed cycles since my loss in 07. I had nk elevation over 20% the first time and 17% without tx. I wanted to make sure the elevation was not a fluke and it obviously was not. Without intralipids I'm sure the likelihood of getting pg. and staying pg. is very slim and actually most doctors want 12% or under and 15% is at the upper end. With my age there is no guarantee of success with my own eggs now, however, this past cycle I had the early loss and without intralipids I don't think I would have gotten that far. It cost me $105 plus a $15.00 co-pay. I wouldn't spend $2k without any guarantees on an experimental tx. Just my friendly two cents! I'll be doing another round in intralipids for my next IUI hopefully at the end of the month. HUGS

[rjc0704]

Stacey - Thanks my friend. I am calling Dr. Stricker today to see if Intralipids are an option. I know they won't be offering it until Aug, so I'm hoping for a work around and that he will work with SIRM or Millinova. I know IF my insurance authorizes it, they won't allow more than 1 a month. They are very picky about the approved uses for it as well.

Are you East coast? Did you have your Intralipids therapy at home or in Dr office? Will you be trying again soon? I hope you're next cycle is successful!

[poohbear]

Rhonda,
I'm on East Coast in upstate NY. I had my intralipids at my RE's office but I had to drive 2 hours one way to the main office to get because they aren't set up to offer in my smaller local office. I only had one infusion and insurance covered. If I get a BFP they are supposed to be done every 4-5 weeks apart I believe. SIRM wouldn't let me fly to NYC and get it unless I became a patient so basically I sat for over a year with no other option. Maybe your physician can work something out. I know Dr. Coulam at Rhinehart in IL will work with other physicians. Thanks on the cycle. I'm Oing very late this cycle probably because of the loss so I'm not even expecting AF until late June. Keep me posted! HUGS

[rjc0704]

Stacey - Hope you are hanging in there. It's such a long, hard, stressful, road...that's putting it nicely, right??

I spoke to Cindy who spoke to Dr. Stricker and he said that Intalipids is for NK and that mine is basically normal. though initially he told me normal count, high activity. I need the IVIG for slightly low cyclites (sp?) I called Accredo and got a price quote of 3600 per infusion and i need two. We are going to try to submit to Connecticare under dcode 288.4 White Blood cell Disease but they require some pretty strict documentaiton.

It's very hard to come up with 7200 right now...plus harder to think that we don't even know if the donor will cycle well! We could end up cancelled and be out all the $$. So, hoping Ins will cover it...else, I can't do more than 1, closer to egg transfer. Better than nothing, right?

[poohbear]

Rhonda,
I'm sorry. Mine is purely for elevated nk cell activity. I don't know what the cyclites (sp) are for. That really stinks. That is why I couldn't do IVIG because no way could we afford that much and ins. normally won't cover. BIG BIG HUGS. You could always do it the day of ER. Normally they like it a week before transfer but maybe you could swing it and do the one infusion. There is a letter on the incidd board that is a draft letter that some doctors will send to the insurance companies re: necessity for IVIG. Your doctor could send it and maybe the ins. would cover you especially if you get pg. You have to go to their site and it's somewhere in the forms area. If you can't find it, let me know and I'll try to look for you. HUGS

[Danasingle]

I live in Canada and it is $500. for each Intralipid infusion.

Dana

[Holymoly43]

Hi girls, I don't know if any of you can help with this but I'll give it a try.

I am in Australia and have been diagnosed with NK. I had to go through 2 failed IVF and change doctors to be tested.I just knew as many of you do...something was very wrong.

The new RE did the biopsy but only prescribed a low dose of prednisone. I have seen dosages at 3 x what she has ordered. She also does only 1 scan to count follicles and NO bloodwork during a cycle.

I am more confident about the IVIg working well and having less long side effects.
The big question is....does anyone know of a RE or anyone who will do IVIg here? The main guy here is 8 hours away and uses only prednisone.

I have been calling everyone everywhere and no one I can find knows anything. Hubby even called the 2 big IVIg early adopters in London and they know of no one here and said we should go there for treatment.....yeah right.We;ll hop in our jet right now with a few bags of monopoly money right now.

Help please if you can

[chelsharmony]

hey ladies, wondering what the incidd board is and how i get there - i am going to the doc 2moro, i was spose to have a IVIg treatment that my ins told me was covered and then when it came down to filling the order it was not covered so i couldnt order it. $4,000 it would have been for 2moros treatment (i think she ordered enuf for this week adn next weeks treatment) but anyway, i called ins and they said there were a few code diagnosis they would cover for however 279.4 was not one and they wouldnt tell me the ones that were covered, what a surprise.
Anwyay, mine NK level was 27 adn they said was way too high - what were you ladies - did they tell you?
I will go with treatment even if i have to pay, however, i may just need to wait until + hpt unless i can find soemthing cheaper.
Have any of you heard that you can take colostrum as treatment as well for NKC's?
thx for any help on this matter.

[chelsharmony]

Originally Posted by Holymoly43

Hi girls, I don't know if any of you can help with this but I'll give it a try.

I am in Australia and have been diagnosed with NK. I had to go through 2 failed IVF and change doctors to be tested.I just knew as many of you do...something was very wrong.

The new RE did the biopsy but only prescribed a low dose of prednisone. I have seen dosages at 3 x what she has ordered. She also does only 1 scan to count follicles and NO bloodwork during a cycle.

I am more confident about the IVIg working well and having less long side effects.
The big question is....does anyone know of a RE or anyone who will do IVIg here? The main guy here is 8 hours away and uses only prednisone.

I have been calling everyone everywhere and no one I can find knows anything. Hubby even called the 2 big IVIg early adopters in London and they know of no one here and said we should go there for treatment.....yeah right.We;ll hop in our jet right now with a few bags of monopoly money right now.

Help please if you can

holymoly - i talked wiht my doc last night about maybe taking steroids for a few cycles and then when i get a +hpt i could go wiht the IVIg since they are way more expensive then steroids. They think it may be ok. It has worked for a patient in their office the only issue is that they say my NKcells are quite high so the IVIg would work better and faster.
I can get pregnant just cant stay pregnant - i have had 4 m/c in the last 3 years wiht no explanation til now.
Also, please tell me your s/e or reactions to the steriods. I am worried about rage since i am already pretty high strung and short fuse now. I dont need any help getting angry these days