IVIG v. Intralipids (BOTH)

Cathy LJ · 03-06-2009, 01:39 PM

I saw that SIRM was on this, as well as women going through this: I have done Intralipids (NK) and I am okay w/ that. Because of a skin disorder (long story) it was recommended that I do both IVIG and Intralipids (for NK). First, I am not inclined to do IVIG bx of HIV scare as well as stories of side effects, but more importantly, is there concern about doing both? Also, what have you heard about the side effects of IVIG? Any information would be VERY appreciated. Thanks.

lw962 · 03-06-2009, 01:48 PM

hi cathy,

i have a telephone consult with sirm on tuesday. i have done ivig in the past for an ivf cycle and it worked great. i did not have any side effects at all. neither did i contract hiv or hepatitis. actually there has not been any documented cases of hiv or hepatitis transmission thru ivig. i do not have nk cells but some other immune stuff going on. my upcoming consult is with Dr. T in the NY office. from my understanding, they have abandoned their use of ivig altogehter for intralipids instead. i wonder how effective is intralipids for those that do not suffer from nk cells but rather from other immune issues.

Cathy LJ · 03-06-2009, 02:01 PM

yes, i have high nkc, thus the intralipids. the ivig was for the skin issue which could cause miscarriage. still not sold..but nice to hear input. thanks and good luck!

poohbear · 03-06-2009, 02:20 PM

I do not think intralipids are indicated for APA's so if you have both APA issues and nk cells which I have I may get stuck with IVIG. Anyone have any more info on this?

lw962 · 03-06-2009, 02:37 PM

poohbear- I have apa's & etf and i was told that intralipids arent effective on apa's, so ivig would be my best bet. but this is what they said years ago about ivig. they said ivig was just for nk cells too. my current re says they use it interchageably for all immune issues and apparetnly so does SIRM. but i'll make sure thru my consult.

lw962 · 03-06-2009, 03:00 PM

pooh- do you go to a well known reproductive immunologist?... i had a consult with dr. coulam at rineheart center. she says only ivig for apa's. but im hoping dr. T at SIRM will give new insight. i'll keep u posted.

poohbear · 03-06-2009, 03:40 PM

lw,
I had testing last year and I have elevated CD56+16+ on the RIP. Everything else was "normal." I also showed elevation on nka and showed suppression with both IVIG and intralipid. I was borderline on the APA panel however I am moderately + for ACA and this was explored further with a local rheumatologist. I've been doing baby aspirin and did lovenox this past BFN cycle. I've never really treated the nk issue which is a long story because two local RE's don't believe in it and I've also been pg. to term 2x. Since my loss in July 07, I just can't get pg. despite good cycles and IUI. Briefly, I've repeated just the RIP and NKA as Dr. Coulam suggested that as it's been a year so we'll see where it's at. I'm anxiously waiting the results and the b/w was sent off Monday to Millenova. We'll see. There is another local RE in my area that uses IVIG so I may just go do that with him. I'm a little afraid of both intralipid and IVIG but at this point regardless of what I do I feel I'm at a crossroads and turning 43 next month I'm running out of time so it's now or never.

My problem with SIRM is that they wouldn't treat me with intralipid unless I became a patient and honestly I can't be flying back and forth to NYC due to job, family etc. Dr. T. evaluated my labs from Millenova last spring and I liked him. I just couldn't fathom long distance monitoring etc. NYC is a 6 hour drive from me. In January, I found a dr. in Syracuse, NY who now has a local office although not sure if I can get the IVIG in town yet as they are still setting up. I know Dr. Coulam will treat patients and I could go there for the intralipid. Right now just waiting to see what I want to do.

lw962 · 03-06-2009, 04:01 PM

pooh- thanks so much for sharing. i have an re locally thats willing to treat me with any of the other docs immune protocol. i did get pg this last ivf cycle using my re protocol of ivig the day of et and heparin and baby aspirin. unfortunately my beta was only 12. i feel so close to a sol'n but now dh doesnt wanna proceeed anymore with ivf. it was my 4th try, but my 1st try with ivig. dr. coulam suggested 40g of ivig 6-7 day b4 et, medrol, heparin and baby aspirin, then ivig again with 1st +hpt. but b/c dh is against another ivf, we are thinking of iui with ds and intralipids. dr. coulam doesnt think this is doabole b/c she doesnt believe intralipids will work on apa's. but my local re says that she would do intralipids with and iui cycle. but i wanna see what Dr.T of SIRM thinks first.
Luckily my current Doc is willing to do which ever immune protocol any of these docws suggest. She is also my 3rd re. my previous ones didnt believe in any of this stuff either. and SIRM is willing to work with my local re. is it possible for you to look for a local re willing to work with SIRM?
Also, you mentioned that you showed suppression with but intrlipids and ivig... how is this determined?

poohbear · 03-06-2009, 08:06 PM

Child Ment.
lw
I hope the IUI works. I can understand where your dh is coming from. My dh won't even do IVF and we have children so this is the last hurrah. I never did any tx. before so this is just mind boggling to me how things can change so much. I'm so sorry for your last cycle. I have heard IVIG has to be done about week before ET because it takes that long to inactivate the nk cells or something like that. Not sure about intralipid. I am meeting with a new RE this week. I really want to have my labs back to to take with me. Once I get the results, I was going to ask Dr. Coulam on what she suggests as she is the one who told me to repeat the tests. I have anti-cardiolipid ab and I thought baby aspirin and lovenox/heparin were the tx. for that. I don't get how IVIG helps that which is why I thought I could get away with the intralipid.

The nka essay puts the blood into I think fetal tissue of mice and looks for killing power of the nk cells. If it is over a certain % they see if IVIG or intralipid will suppress the killing power. Just having nk cells in the blood doesn't really tell you much. The ones I apparently have elevated are the bad ones and the proof was from the other test.

lw962 · 03-06-2009, 08:23 PM

pooh,
when i spoke to dr. coulam last week, she explained that intralipids was only good for nk cells. but from my understanding, SIRM uses it for alot of other immune issues or a combo of ivig and intralipids. the telephone consult with SIRM is free. maybe you can have a consult and if they agree to treat you with intralipids, have dr. coulam do the prescribing.
For ACA i think adding predinsone or humira can also be helpful. since i have the ETF- cytokine stimulation, i wonder if they can see if intralipids or ivig can supress it.
i wish you lots of luck! pls keep me posted on ur progress.

03-06-2009, 01:39 PM	#1 (permalink)
Cathy LJ 0-99 post 2 of hearts Join Date: Mar 2009 Location: CA Posts: 6	IVIG v. Intralipids (BOTH) I saw that SIRM was on this, as well as women going through this: I have done Intralipids (NK) and I am okay w/ that. Because of a skin disorder (long story) it was recommended that I do both IVIG and Intralipids (for NK). First, I am not inclined to do IVIG bx of HIV scare as well as stories of side effects, but more importantly, is there concern about doing both? Also, what have you heard about the side effects of IVIG? Any information would be VERY appreciated. Thanks.

03-06-2009, 02:01 PM	#3 (permalink)
Cathy LJ 0-99 post 2 of hearts Join Date: Mar 2009 Location: CA Posts: 6	thanks yes, i have high nkc, thus the intralipids. the ivig was for the skin issue which could cause miscarriage. still not sold..but nice to hear input. thanks and good luck!

03-06-2009, 02:20 PM	#4 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	I do not think intralipids are indicated for APA's so if you have both APA issues and nk cells which I have I may get stuck with IVIG. Anyone have any more info on this? Last edited by poohbear; 03-06-2009 at 02:22 PM.

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03-06-2009, 01:48 PM	#2 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,776	hi cathy, i have a telephone consult with sirm on tuesday. i have done ivig in the past for an ivf cycle and it worked great. i did not have any side effects at all. neither did i contract hiv or hepatitis. actually there has not been any documented cases of hiv or hepatitis transmission thru ivig. i do not have nk cells but some other immune stuff going on. my upcoming consult is with Dr. T in the NY office. from my understanding, they have abandoned their use of ivig altogehter for intralipids instead. i wonder how effective is intralipids for those that do not suffer from nk cells but rather from other immune issues.

03-06-2009, 02:37 PM	#5 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,776	poohbear- I have apa's & etf and i was told that intralipids arent effective on apa's, so ivig would be my best bet. but this is what they said years ago about ivig. they said ivig was just for nk cells too. my current re says they use it interchageably for all immune issues and apparetnly so does SIRM. but i'll make sure thru my consult.

03-06-2009, 03:00 PM	#6 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,776	pooh- do you go to a well known reproductive immunologist?... i had a consult with dr. coulam at rineheart center. she says only ivig for apa's. but im hoping dr. T at SIRM will give new insight. i'll keep u posted.

03-06-2009, 03:40 PM	#7 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	lw, I had testing last year and I have elevated CD56+16+ on the RIP. Everything else was "normal." I also showed elevation on nka and showed suppression with both IVIG and intralipid. I was borderline on the APA panel however I am moderately + for ACA and this was explored further with a local rheumatologist. I've been doing baby aspirin and did lovenox this past BFN cycle. I've never really treated the nk issue which is a long story because two local RE's don't believe in it and I've also been pg. to term 2x. Since my loss in July 07, I just can't get pg. despite good cycles and IUI. Briefly, I've repeated just the RIP and NKA as Dr. Coulam suggested that as it's been a year so we'll see where it's at. I'm anxiously waiting the results and the b/w was sent off Monday to Millenova. We'll see. There is another local RE in my area that uses IVIG so I may just go do that with him. I'm a little afraid of both intralipid and IVIG but at this point regardless of what I do I feel I'm at a crossroads and turning 43 next month I'm running out of time so it's now or never. My problem with SIRM is that they wouldn't treat me with intralipid unless I became a patient and honestly I can't be flying back and forth to NYC due to job, family etc. Dr. T. evaluated my labs from Millenova last spring and I liked him. I just couldn't fathom long distance monitoring etc. NYC is a 6 hour drive from me. In January, I found a dr. in Syracuse, NY who now has a local office although not sure if I can get the IVIG in town yet as they are still setting up. I know Dr. Coulam will treat patients and I could go there for the intralipid. Right now just waiting to see what I want to do.

03-06-2009, 04:01 PM	#8 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,776	pooh- thanks so much for sharing. i have an re locally thats willing to treat me with any of the other docs immune protocol. i did get pg this last ivf cycle using my re protocol of ivig the day of et and heparin and baby aspirin. unfortunately my beta was only 12. i feel so close to a sol'n but now dh doesnt wanna proceeed anymore with ivf. it was my 4th try, but my 1st try with ivig. dr. coulam suggested 40g of ivig 6-7 day b4 et, medrol, heparin and baby aspirin, then ivig again with 1st +hpt. but b/c dh is against another ivf, we are thinking of iui with ds and intralipids. dr. coulam doesnt think this is doabole b/c she doesnt believe intralipids will work on apa's. but my local re says that she would do intralipids with and iui cycle. but i wanna see what Dr.T of SIRM thinks first. Luckily my current Doc is willing to do which ever immune protocol any of these docws suggest. She is also my 3rd re. my previous ones didnt believe in any of this stuff either. and SIRM is willing to work with my local re. is it possible for you to look for a local re willing to work with SIRM? Also, you mentioned that you showed suppression with but intrlipids and ivig... how is this determined?

03-06-2009, 08:06 PM	#9 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	Child Ment. lw I hope the IUI works. I can understand where your dh is coming from. My dh won't even do IVF and we have children so this is the last hurrah. I never did any tx. before so this is just mind boggling to me how things can change so much. I'm so sorry for your last cycle. I have heard IVIG has to be done about week before ET because it takes that long to inactivate the nk cells or something like that. Not sure about intralipid. I am meeting with a new RE this week. I really want to have my labs back to to take with me. Once I get the results, I was going to ask Dr. Coulam on what she suggests as she is the one who told me to repeat the tests. I have anti-cardiolipid ab and I thought baby aspirin and lovenox/heparin were the tx. for that. I don't get how IVIG helps that which is why I thought I could get away with the intralipid. The nka essay puts the blood into I think fetal tissue of mice and looks for killing power of the nk cells. If it is over a certain % they see if IVIG or intralipid will suppress the killing power. Just having nk cells in the blood doesn't really tell you much. The ones I apparently have elevated are the bad ones and the proof was from the other test.

03-06-2009, 08:23 PM	#10 (permalink)
lw962 1000-4999 post queen of hearts Join Date: Oct 2007 Location: Miami, FL Posts: 3,776	pooh, when i spoke to dr. coulam last week, she explained that intralipids was only good for nk cells. but from my understanding, SIRM uses it for alot of other immune issues or a combo of ivig and intralipids. the telephone consult with SIRM is free. maybe you can have a consult and if they agree to treat you with intralipids, have dr. coulam do the prescribing. For ACA i think adding predinsone or humira can also be helpful. since i have the ETF- cytokine stimulation, i wonder if they can see if intralipids or ivig can supress it. i wish you lots of luck! pls keep me posted on ur progress.