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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Intralipid infusion ladies please come in!
I started bleeding today (5dp5dt)...the same bleed I had on my two previous failed cycles. I know it *can* be normal and I *may* still get my bfp...not to say Im not hopeful but if I am being realistic it is time to think next steps. I don't want to be sitting here typing the same message after another round.
I have known autoimmune issues...diagnosed at 10 years old. I was always told it wouldn't interfere with getting pg and am still told by docs they don't thnk it is the problem (we are also dealing with MFI so docs think that's the issue). I am taking things in my own hands and think it's time I insist on intralipid infusions.
My next cycle will be and FET..we have three frozen embryos. Can infusions be done for FETs? If so, how does it work? Can you share any other details you thk would be relevant here?
TIA...I depend on this forum more than docs some times!
Eta: can you also share what you know about where the infusions are performed and the cost and coverage (do most ins companies cover it?)
Message edited 4/25/2013 9:06:06 PM.
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Posted 4/25/13 9:02 PM  |
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AugustMom
LIF Adolescent
Member since 5/11 743 total posts
Name:
Christine
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Intralipid infusion ladies please come in!
I don't know anything but was thinking of you today! I am sorry you are bleeding. Could it just be spotting? Hugs!!
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| Posted 4/25/13 9:44 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Intralipid infusion ladies please come in!
Posted by AugustMom
I don't know anything but was thinking of you today! I am sorry you are bleeding. Could it just be spotting? Hugs!!
I would love to find out its not what I think it is but based on past experience I am feeling defeated. Thank you for your message  I hope you have a great update some time soon!!
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| Posted 4/25/13 9:54 PM |
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FlowerWife
Positive Vibrations...
Member since 1/08 8423 total posts
Name:
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Intralipid infusion ladies please come in!
i dont think its something you can really "take into your own hands." you need a doctor that believes in immune treatments, will test you for an array of issues, and then treat accordingly. even if you have a pre-existing immune issue that doesn't necessarily mean intralipids would be your answer either, there are different treatment protocols for different issues. you should def see Dr. B or SIRM if you think immune tolerance is playing a role in your failed cycles.
that being said infusions can be done for any type of cycle. i did them for TI cycles and IVF. for me my insurance covered home infusions so i used a company called trinity and it was fully covered. they would send the bag and equipment a day or two early and then the nurse would do the infusion in my house, it took about 3 hours. if it wasnt covered by insurance it wouldve cost me something like $350-$400, but that was almost 3 years ago now. i think its 50-50 whether or not your insurance will cover a home infusion but many will cover an on-site infusion. good luck!
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| Posted 4/25/13 9:55 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Intralipid infusion ladies please come in!
Posted by FlowerWife
i dont think its something you can really "take into your own hands." you need a doctor that believes in immune treatments, will test you for an array of issues, and then treat accordingly. even if you have a pre-existing immune issue that doesn't necessarily mean intralipids would be your answer either, there are different treatment protocols for different issues. you should def see Dr. B or SIRM if you think immune tolerance is playing a role in your failed cycles.
that being said infusions can be done for any type of cycle. i did them for TI cycles and IVF. for me my insurance covered home infusions so i used a company called trinity and it was fully covered. they would send the bag and equipment a day or two early and then the nurse would do the infusion in my house, it took about 3 hours. if it wasnt covered by insurance it wouldve cost me something like $350-$400, but that was almost 3 years ago now. i think its 50-50 whether or not your insurance will cover a home infusion but many will cover an on-site infusion. good luck!
Thank you! I realize the doctor must be on board but I have also learned that being your own advocate in this process is critical. So my intent is to take it into my hands to explain to the doc why it should be considered. Luckily even though he is not one of the immune specialists he does have all my records and there is no denying that it is an issue - he is actually the first doc to say it 'could be' playing a part. He treated me with synthroid, prednisone and baby aspirin this round, but I guess it still wasn't enough. I've been on lovenox in past cycles and that didn't do it either. This time I would like the infusions and heparin to be considered.
I have heard about Dr. B and SIRM...unfortunately with my ins Dr. B is not an option (I'm 90% covered with the new doc I'm using and I want to drain my options with him before I look into paying OOP). And SIRM - do they have any offices in LI? I live and work in Suffolk and there's just no way I can make it to the city.
Thank you for the details on the infusion - glad to hear the cost isn't too bad (in comparison to the rest of the IVF journey).
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| Posted 4/26/13 8:28 AM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Intralipid infusion ladies please come in!
Posted by mrsanonymous
I have heard about Dr. B and SIRM...unfortunately with my ins Dr. B is not an option (I'm 90% covered with the new doc I'm using and I want to drain my options with him before I look into paying OOP). And SIRM - do they have any offices in LI? I live and work in Suffolk and there's just no way I can make it to the city.
Thank you for the details on the infusion - glad to hear the cost isn't too bad (in comparison to the rest of the IVF journey).
I used SIRM with my current pregnancy and no, unfortunately they do not have offices in LI. Perhaps you could try and coordinate it so Dr.B will work with the doctor you do end up seeing and help to coordinate the immune related portion of your care! I know he can/has done that.
The current rate to get infusions privately if not covered by your insurance is approx. $450, which includes the IV meds and nurse to administer it. It may be a little less depending on where you get your meds from - but keep in mind there has been a nationwide shortage on intralipids for a few months now. Hopefully by the time you would start, that issue would be resolved!
Good luck!
I was doing treatments for many years and my first round with intralipids was my most successful. At 23wks I'm still using them.
Message edited 4/26/2013 11:33:23 PM.
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| Posted 4/26/13 11:32 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Intralipid infusion ladies please come in!
Thank you for your response, Penny! Glad to hear the costs aren't too bad. I did hear about the shortage but what's another road block in this journey, right? I'll be chatting with my doc about it this week.
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| Posted 4/29/13 10:28 AM |
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