Study on potential Treatment?

This is a study of something called Intravenous Immunoglobulin, our doctor wants to try it with Tracey, and we probably will once we complete our move to Massachusetts.
Secondary Erythromelalgia Successfully Treated With Intravenous Immunoglobulin

Has anyone herd of this before?

I'm going into hospital tomorrow to try a lidocaine infusion, through my pain consultant. I'm hoping that my other doctor, who is a world expert on EM will have time to see me, and I'll try and ask her about it. I'll also ask her if Lidocaine infusions would work for your wife, as they seem to work by turning off the hypersensitivity of the nerves. Can I ask what disease your wife's EM is secondary to?

IVIG -- Intrveneous Immunoglobulin Infusion

My granddaughter(15) suffers from Pancytopenia (low platelets, low wht. & red cells) & anemia. She has receiving IVIG infusion from her Hematologist every 4 weeks for nearly two & a half years. (Dr. Lobel, Borgess Hospital, Kalamazoo, MI)

The University of Michigan Medical Center has agreed also that it remains the best treatment for her to boost her immune system. Slowly increasing strength of infusion should allow her marrow to produce better blood. I will add that she has had more than a few allergic reactions to this but that could just be her.

I would be interested if anyone would know if this is used for EM ??? Interestingly enough, also, my Polycythemia is treated with phlebotomies. (removing blood to force the marrow to produce better blood)

Starmurf - we are not sure what the primary condition is, we just don't think it is primary EM....let me know what the Dr says about both things! Thanks!

Gwen - do you mind if I ask what the cost is for the IVIG infusion? Our Dr is looking into the cost, but have yet to find out an exact answer and have read everything from several thousand dollars to 20,000 per infusion or treatment (which I'm not sure if that means multiple or one infusion). Any info you have on this would be awesome!


Matt: I emailed my daughter. :) I haven't seen the actual paperwork before or after her ins. pays. Seems to me I remember a couple grand for each infusion... I'll find out for you. I've just been with her for support not paid much attention to paperwork.

As far as info for the infusions... The whole thing is not pretty. Problems finding her vein... allergic reactions (they usually add benedryl w/ it to start) then something to sleep & Versaid(sp) so she won't remember. Usually takes abt. 3-4 hours. then another hour observation, then home. They are considering a port... All in all, her numbers are the same as they were 1 and a half yrs. ago... The infusions every 4 wks., if in bwt. she gets a cold/flu etc. then steroids to combat, then infusion to boost immune, just around & around with not much progress. I would like to know basically what the timeline for success is for the infusions in the study for EM

Matt, unfortunately my doctor didn't manage to see me today but I asked the pain specialist and he said it's effective for secondary EM. I won't know the results of my first infusion for a few days yet but will keep you posted!

Thanks for looking into those things. If you hear anything new definitely let me know! And let me know how the infusions help! Thanks!