autoimmune painful polyneuropathy

[lenerag]

i am a 37 year old with an autoimmune disorder called polyneuropathy...i am not diabetic....i use IV IG for this monthly...is there anyone out there who has had this or has a family member with this, or is currently on IV IG therapy, please e-mail me i would really like to talk to someone with this or even on IV IG therapy....thanks

[perrinsln]

hi, I have CVID [common variable immunodeficiency]. [which is a primary immune deficiency].
I recieve ivig 36grams every fortnight. What did you want to know about ivig? Reply to this message if you have any questions, i might be able to answer some.
You can also find info. at The jeffrey Modell Foundation = [url="http://www/jmf.world.com"]http://www/jmf.world.com[/url]
and IDF = Immune Deficiency Foundation.
Depending on what brand of IVIG you use, most of the manufacturers have www. sites ie. Gammard, Baxer etc. I'm in Australia and use IntragamP* made by CSL.
Sharon

[lenerag]

thanks for writing me back about this, i am on Gammagard made by Baxter, i have gone to their site and checked it out, i wanted to know if you get a very bad headache with your therapy and nausea, i have been bothered greatly by these two things, and am trying chemo type things to control it, as in Zophran for nausea, and OxyContin for pain control and Oxy IR for headache, i take the therapy for three days at 70 grams per day and then by the four or fifth day i am sick with a headache and nausea to the point of vomiting if not medicated.....i was wondering if yours is the same situation or if you are given yours differently to avoid side effects, thanks in advance for answering me back,