Immunology results in - what do you think?

may2806

I met with the reproductive immunologist yesterday about my test results. The main thing that is wrong is that my natural killer T cells are very high. This is different than regular NK cell activity, which was normal. For NK T cells he recommends IVIG (not intralipids), which he says have a high success rate. It's very expensive and probably not covered by insurance (although they are checking). The second option would be to use Neupogen, which is a hormone injection and much cheaper. He said he thinks this will work but because it is a new treatment he doesn't have as much data to back up success rates, etc.

He said we could try the Neupogen and if it doesn't work to try IVIG on a frozen cycle. Honestly I don't want to have to go through another loss and another cycle, even a frozen one, and there's no guarantee I'll get frosties anyway (I'm going to write another post about this...).

Financially we are luckily in a very good place and could afford to do IVIG - although of course I don't want to spend the money if we don't have to since I'm already spending so much OOP on the DE cycle. 

He would also recommend Lovenox, which I was already on but he will monitor my levels to adjust the dose. My main concern here is that my RE or OB (if I get pg) will disagree with him about how much, if/when to stop, etc. 

What do you ladies think? Any experience/thoughts on Neupogen or IVIG? Do you think it's ok to let RI decide my Lovenox treatment, not RE or OB?

(On an emotional note all I can think about is how I'm supposed to be giving birth this week, not making important decisions that could make or break a future pregnancy)

theworms

((HUGS)) i'm sorry cutie.  i hate that you have to make these decisions.

i'll give you my experience.

for this cycle i started out on lovenox, prednisone and neupogen.

dr. b monitored me with b/w for loveonx and immune issues.

around 6/7 weeks my immune b/w showed my nk levels had risen and i added an intralipids infusion.

repeat immune b/w showed my levels rose even more and i did IVIG infusions last week.  i will repeat immune b/w next week to see if it worked and to determine next steps.

i was lucky that insurance covered some of the cost of the IVIG, we paid about $2000 oop.  columbia pharmacy has the best prices for IVIG.

for lovenox i started out on 2 doses a day.  he monitored me for the lovenox and adjusted as necessary.  after my bleed during week 6 we went down to 1 time a day and he's done repeat b/w and it's been good.  i would totally trust him to determine my lovenox usage over an OB, RE and even my old hema.  

Dr. B knows what he is doing.

My MFM has agreed to let dr. B continue his treatments and for me to stay on the lovenox for pregnancy.

if you have any questions i'm always around. 

BeeBee08

I don't have any advice on the immunology results, but I wanted to send you a big ((hug)).  I'm sorry you have to make these decisions and I'm sorry the timing has to be right now. 

vanessagorc

I defer to worms on the matter...and dr  B is doing a great job with her!!!!!!

mdluv21

I am in a similar situation (though not as set finacially to pay for it.)  I think I am going to go with IVIG.

I am waiting to see if my RE will let me purchase the IVIG at another pharmacy and then infuse with him.  I hope so...it would save a lot of money.  He wouldn't let me do it with intralipids though which really pissed me off.

If we can't pull off the cost of IVIG I will be doing 3 intralipids close together which he said might be almost as effective.

I will also be on lovenox and baby aspirin and dexamethesone.  (Though after reading a post of Worms, I may ask about switching to predisone if I get a BFP.)

may2806

mdluv21:

I am in a similar situation (though not as set finacially to pay for it.)  I think I am going to go with IVIG.

I am waiting to see if my RE will let me purchase the IVIG at another pharmacy and then infuse with him.  I hope so...it would save a lot of money.  He wouldn't let me do it with intralipids though which really pissed me off.

If we can't pull off the cost of IVIG I will be doing 3 intralipids close together which he said might be almost as effective.

I will also be on lovenox and baby aspirin and dexamethesone.  (Though after reading a post of Worms, I may ask about switching to predisone if I get a BFP.)

Interesting, for me Dr said no prednisone if we do IVIG... 

theworms

may2806:

mdluv21:

I am in a similar situation (though not as set finacially to pay for it.)  I think I am going to go with IVIG.

I am waiting to see if my RE will let me purchase the IVIG at another pharmacy and then infuse with him.  I hope so...it would save a lot of money.  He wouldn't let me do it with intralipids though which really pissed me off.

If we can't pull off the cost of IVIG I will be doing 3 intralipids close together which he said might be almost as effective.

I will also be on lovenox and baby aspirin and dexamethesone.  (Though after reading a post of Worms, I may ask about switching to predisone if I get a BFP.)

Interesting, for me Dr said no prednisone if we do IVIG... 

In my case I wasn't planning on doing intralipids or IVIG and needed to add when neupogen was not enough.  

Each situation is different and lucky us, we all have our own unique issues.