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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Results from Immune work up
Dr. B called and gave me the skinny.
I've got off the charts immune issues and NK cells. My inflammation TNF is very high.
Since I have Crohns we knew we would find something.
This is probably one of the biggest reasons for my poor response and m/c and implantation as well.
So intralipids and Humira is on the menu for me.
Gastro doc is going to have to talk to Dr. B about it and come up with the plan.
I wish I knew about this stuff 2 years ago. Not only am I fighting being older but now this.
I could have gone on Humira years ago but fought it. It's a major drug with side effects and I never wanted to be on it while pregnant. It doesn't pass through the placenta though.
The upside is that my Crohns will feel better and maybe if we get this right I could have a kid.
If I went DE I would still have this issue so I'm so glad I found out even though it's bittersweet. My own body was attacking itself.
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Posted 1/12/10 1:43 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
lolipep
My prayers have been answered
Member since 10/08 3642 total posts
Name:
Lori
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Re: Results from Immune work up
I'm glad you figured all this out! Now it can all be fixed.
 praying for you- and thinking of you!!
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| Posted 1/12/10 1:58 PM |
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Re: Results from Immune work up
I was on Humira for quite a long time and it really made a huge difference. I didn't have side effects from it. I went off of it for pregnancy but I will be going back on after I deliver.
If you have any questions about it, feel free to FM me. 
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| Posted 1/12/10 2:01 PM |
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Daisy32
Mommy
Member since 2/08 8081 total posts
Name:
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Re: Results from Immune work up
Posted by lolipep
I'm glad you figured all this out! Now it can all be fixed.
praying for you- and thinking of you!!
ITA!!!
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| Posted 1/12/10 2:04 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Results from Immune work up
Posted by munchkinfacemama
I was on Humira for quite a long time and it really made a huge difference. I didn't have side effects from it. I went off of it for pregnancy but I will be going back on after I deliver.
If you have any questions about it, feel free to FM me.
Thanks. I'm scared but I never wanted to go on it before but now it could be the answer.
I'm looking forward to managing my symptoms too.
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| Posted 1/12/10 2:14 PM |
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ODonnell
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Member since 9/05 5983 total posts
Name:
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Re: Results from Immune work up
Glad you got answers. Hope the medication works some magic.
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| Posted 1/12/10 2:27 PM |
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Re: Results from Immune work up
I kinda felt the same way.........it was all very bittersweet. Somewhat happy to have answers........but sad and disappointed that I actually was diagnosed with an issue; elevated NK cells.
I know he told me normal levels are below 15 and mine were at 32.  If you don't mind me asking, how high are your NK levels? The prednisone, thankfully, isn't as bad as I thought....but it's only been 2 weeks.  And the Intralipid IV wasnt as bad as I thought either.
GL with everything! It's amazing how much information we learn after we become patients of his!
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| Posted 1/12/10 3:01 PM |
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skinny
3 boys and a princess!
Member since 11/08 8178 total posts
Name:
Momma
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Re: Results from Immune work up
I'm glad that you finally got some answers!
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| Posted 1/12/10 3:16 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Results from Immune work up
Posted by HopelesslyDiscouraged
I kinda felt the same way.........it was all very bittersweet. Somewhat happy to have answers........but sad and disappointed that I actually was diagnosed with an issue; elevated NK cells.
I know he told me normal levels are below 15 and mine were at 32. If you don't mind me asking, how high are your NK levels? The prednisone, thankfully, isn't as bad as I thought....but it's only been 2 weeks. And the Intralipid IV wasnt as bad as I thought either.
GL with everything! It's amazing how much information we learn after we become patients of his!
Who does your IV?
I just spoke to him twice again. He was going to do the pred and intralipids and didn't want to do the Humira because the ramp up is 3 months! I don't have that kind of time.
So I called him back and asked him why not add the Humira anyway because it can't hurt and it could only help, this way I don't have to wait another 3 months to find out that the intralipids and the pred didn't do enough.
He agreed. Glad I thought of that.
Still waiting for my gastro to call me back for his opinion.
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| Posted 1/12/10 3:27 PM |
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lolipep
My prayers have been answered
Member since 10/08 3642 total posts
Name:
Lori
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Re: Results from Immune work up
just wanted to let you know that i have done the intralipids with both RXSolution and Trinity home care
(both were great BTW)
But Rx only cost me $495 and trinity was $625- so i would double check with them and see if they still use Rx cause it could be cheaper.
good luck!
I have elevated NK cells too so if you ahve any questions about the intralipids feel free to FM me
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| Posted 1/12/10 3:49 PM |
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Re: Results from Immune work up
I only had the IV done once so far. My friend is a nurse and she came over do it for me. Otherwise, it's very costly.
I'm glad he's going with your idea, it makes much more sense.
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| Posted 1/12/10 3:52 PM |
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ricaim
LIF Adult
Member since 8/09 1201 total posts
Name:
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Re: Results from Immune work up
I hope your new plan leads to success!
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| Posted 1/12/10 4:11 PM |
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HereIAm
LIF Infant
Member since 10/09 367 total posts
Name:
TTC since April 2009
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Re: Results from Immune work up
Glad you got some answers! Best of luck to you!!!
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| Posted 1/12/10 4:43 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Results from Immune work up
Gastro called back. They are going to talk to each other. I have an aquaintance who is a nurse who can do it. I have to email her tonight. See how much she wants.
The intralipids should be about $50 I was told by Dr. B. I have insurance.
Humira is $$$$$$$ but covered but I'm sure I will have a large co-pay.
This had better work. I'm going to be pumped up on everything.
OMG! add the stims with the Humira and I will be shooting up big time!
Message edited 1/12/2010 4:47:34 PM.
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| Posted 1/12/10 4:45 PM |
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lolipep
My prayers have been answered
Member since 10/08 3642 total posts
Name:
Lori
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Re: Results from Immune work up
Posted by Blu-ize
The intralipids should be about $50 I was told by Dr. B. I have insurance.
That's awesome!
I have insurance too and I only got reimbursed once for some of what I paid. Neither place took my insurance so I had to submitt the claims myself
And to think if I ever get pregnant I'll have to do this like 5-6 times
Sounds like you have a good plan in place!
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| Posted 1/12/10 5:27 PM |
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KMCGK
Gotta have faith
Member since 7/09 2176 total posts
Name:
Keep the Faith
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Re: Results from Immune work up
Happy that you have results!
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| Posted 1/12/10 5:34 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Results from Immune work up
Posted by lolipep
Posted by Blu-ize
The intralipids should be about $50 I was told by Dr. B. I have insurance.
That's awesome!
I have insurance too and I only got reimbursed once for some of what I paid. Neither place took my insurance so I had to submitt the claims myself
And to think if I ever get pregnant I'll have to do this like 5-6 times
Sounds like you have a good plan in place!
I'm going to ask my friend about doing the IV and I will pay her cash. The intralipids themselves Dr. B said were $50. I have to call the insurance company.
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| Posted 1/12/10 5:48 PM |
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MrsTeachMe
LIF Toddler
Member since 1/08 439 total posts
Name:
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Re: Results from Immune work up
Good luck!!
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| Posted 1/12/10 6:01 PM |
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Cocoahontas
LIF Infant
Member since 9/09 133 total posts
Name:
Cocoa
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Re: Results from Immune work up
Glad you have some answers
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| Posted 1/12/10 8:47 PM |
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Re: Results from Immune work up
Posted by Blu-ize
Posted by munchkinfacemama
I was on Humira for quite a long time and it really made a huge difference. I didn't have side effects from it. I went off of it for pregnancy but I will be going back on after I deliver.
If you have any questions about it, feel free to FM me.
Thanks. I'm scared but I never wanted to go on it before but now it could be the answer.
I'm looking forward to managing my symptoms too.
I won't lie-the shot hurts. I would advise taking it out 30 minutes prior to the injection to let it warm to room temp-that helped a little.
I love that it was every other week-I was on Enbrel before that and it hurt IMO just as bad and it was weekly.
Honestly, once you start it and give it a chance to work, you will rave about it like I do. I only went off of it because for me, without methotrexate, it was not as effective and the rheumatologist wanted me on prednisone instead (50 pounds earlier  ) The freedom of being able to do things without your symptoms ruling your life is incredible!!!
And suppressing your immune system for baby makes it all worth it!
ETA-my ANA titer ratio is awful and my SED rate runs high. It helped with keeping my flares under control. I really credit my treatments to helping me get PG!
And if you have a prescription plan, it is usually the highest co-pay. I would just call your ins first, because some require prior authorization because Humira is over 20K a year!
Message edited 1/12/2010 8:51:00 PM.
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| Posted 1/12/10 8:48 PM |
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Phoebee
LIF Adult
Member since 11/06 1623 total posts
Name:
Michelle
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Re: Results from Immune work up
Glad you got some answers and sounds like you're working on a plan!
I too, have NK cells and doing the Intrelipids. Although I have insurance, my insurance denied coverage since they don't find it medically necessary!  My SIL is a RN, so she does the treatment and they order the medicine from freedom. They just upped their price to $75.
The predisone- besides the weight gain... the insomnia is brutal! I'll take it, not like you get much sleep once    is here anyway!
Best of luck to you!!!!
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| Posted 1/12/10 10:26 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Results from Immune work up
I can hardly wait for all of the side effects of Prednisone.
I'm hoping taking Humira will enable me to not have to ramp up my dose if I get pg. That's the plan anyway.
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| Posted 1/13/10 9:03 AM |
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