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Old 01-10-2008, 11:17 PM #21
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Silverlady Silverlady is offline
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Default We're here Roxie

Fingers and toes (well ...almost) crossed for you. Remember us as a big bouquet of balloons flying around over you giving you our support and best wishes. Think about those balloons every chance you get. Red, Yellow, Orange, Blue, Green and so on. It will take your mind off things and help. The group sent me one while I was at Mayo. I thought about those things sooo much. Really did make me feel better.

I'll be the bright red squeaky one.

Good luck,
Billye
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Old 01-11-2008, 04:24 PM #22
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Default SubQ- alternative to IVIG

Roxie... by this time you'll probably be thru the procedure. As others have shared this may BEST thing for someone w/ poor veins & those related issues w/ IV.
I 'm one of those. Port was offered as solution after my veins "blew" during IVIG infusion ( lost nearly 30 gr. of precious IG that day)
I never got port-- instead my treatmts were dc'd per denials from my insurance when medicare Pt D went into effect soon after.

My treatmts just resumed few weeks ago -thanks to NuFactor--the specialty pharmacy that sponsers www.igliving.com & advocates for and educates about IG. No problems w/ IV for me now .... but

I heard about SubQ -Subcutaneous injections of IG (vs IVIG) It was mentioned as an option for people who have problems w/ veins; or who need/prefer to get IG more often & keep levels more consistent. My treatmts are every 3 weeks-30 grams.
SubQ could be weekly at modified dose.

This may be a better option or something others may want to investigate.
IG Living or NuFactor should be able to provide more details.... on SubQ as well as other questions about IG. These folks & company are really great!!

since my DR order IVIG , we just went w/ that ... to get things going again.



Wishing you the Best...


PS....
I just spoke w/ Nurse from NuFactor Specialty Pharmacy; we were discussing several things (since I'm "new" w/ them)
I asked her about SubQ-- she said it is NOt practical for people who get higher doses ( like 60 grams weekly) but works well for those on "lower" doses like mine which can be broken down weekly.
She also said need to have adequate body fat in thighs/ab--"pinch an inch" - to use SubQ. and be ok w/ self injecting.....

then she saw that SubQ is only approved for those Dx'd w/ PID's---primary immune . I wouldn't be able to get it w/ my Dx --CIDP .

anyway, perhaps this may be of interest or help to someone.....

again, I do encourage ya' all to contact igliving.com & subscribe to their magazine. Or if need Advocacy or have other questions about IG.
NuFactor & parent Co deal w/ several "specialty" drugs besides IG, and they are into education....and willing & able to advocate.

I contacted them about Botox --that my neuro wants to try for pain relief --Dx: cervical dystonia. They were great... too much & too OT for this thread... but kudo's to NuFactor and folks here in this forum who referred me to them via www.igliving.com.

BLessings....

Last edited by pono; 01-11-2008 at 04:44 PM. Reason: add --New info.
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