• January 15, 2011 at 3:15 pm

      My home nurse told me this morning that Vivaglobin taken subcutaneous is now FDA approved for CIDP. Could not find this approval on the FDA sight, though he said his company was just notified by the mfg last week of the approval.
      Read some older posts (07 and 08), but looking for something more current.

      Is anyone doing this treatment, and have you seen results different from regular IVIG infusions? Thanks

    • Anonymous
      January 15, 2011 at 7:07 pm

      Hi Fred,
      Julie on this forum is our first member to go on subcutaneous IVIG. You can search using “subcutaneous IVIG” and read her posts. I don’t think she has checked in lately, but I think she was doing well on it. Or private email her and ask her about it.

    • January 16, 2011 at 11:18 am

      Thanks Laurel. I didn’t think about pm and will try that.

    • January 16, 2011 at 11:52 am

      I couldn’t pull up anything in the search for this—it would be great if they started offering it for gamunex users—would be much easier than traveling and it seems it would have a more constant level in the body this way—-also the cost must be a lot less?? Im excited–think i will go google it right now!!lol Lori

    • January 16, 2011 at 8:35 pm

      I did find Julies posts on the sc ivig. They were interesting. It does seem from reading the posts that the sc ivig is only for maint. doses, not loading doses—puts me out–im on loading dose. But for others on a maint dose, may be worth checking.
      there were some clinical trials when i googled– but a lot of criteria—and you may go through it all and receieve the placebo : ( Lori


    • December 27, 2007 at 8:45 am

      While in doing my IVIg at the infusion lab last week one of the nurses asked if I had heard of Vivaglobin. My understanding is it’s done once a week at home, the needle goes under the skin instead of into a vein. Guess it’d be a smaller dose more often without having to rely on a nurse, you learn the procedure and do it yourself. Just wondering if anyone has tried it or heard anything more on it.

    • Anonymous
      December 27, 2007 at 9:12 am

      Interesting possibilities. If you find out any more keep us posted.

    • December 27, 2007 at 9:19 am

      It sounds like subcutaneous ivig dosing. I have read numerous study’s about it. The nursing agency we use said they have a 12 year old boy that does it. Apparently he does several injections into his stomach and waits for the ivig to be absorbed. The needles are a little bigger than a insulin needle I was told. The nurse said there are tangerine size balls on the boys stomach until it gets absorbed into the body. There are supposed to be no side affects because it is not going directly into your vein. I am not sure if this is the same thing you are talking about, but if it is not, it could be another option if you are exploring options.
      Have a good New Year1

    • December 28, 2007 at 1:11 pm

      That sounds like the stuff my nurse was telling me about. My pharmacy didn’t have any info on it but are going to check into for me. I have a terrible thing with needles {okay, I’m a wuzz} but wanted to to see if it was cost effective for me and easier for me to tolerate. I don’t see the neuro until next month but figured on talking to him about it too. I did find a site but it didn’t go into cost, that’s a biggie for me. If I find anything good I’ll pass the word along.

    • Anonymous
      December 28, 2007 at 2:03 pm

      It sounds like a variant of the gamma globulin shots they used to give us prior to deploying to SEA. You can “google” it and get more information.

      Sounds interesting if it is cheaper and faster than IVIg. If anyone has more information please pass it on

      Jim C

    • Anonymous
      December 28, 2007 at 4:57 pm

      Here are two previous discussions on sub-Q:



      The link to the powerpoint presentation on this proceedure is very informative – shows good pictures of the pump, and at the end of the presentation, a cost analysis of ivig and sub-Q shows the potential savings (I’ll give you a sneak peak – there is none; the costs are about the same). The biggest advantage is consistent delivery of IGg for those that need to maintain a steady level and/or those who have adverse reactions to the large volume infused w/ivig.

      Hope this helps.

    • Anonymous
      December 29, 2007 at 5:14 pm

      Primary Immune Deficiencies/diseases, it’s not approved yet for acquired immune diseases such as GBS or CIDP Tho, for is effective. To be frank, from all I’ve read, it depends on what insurance you are on…and if they allow what is considered an ‘experimental’ therapy for acquired immune issues…Web up your own plan and do either a ‘GBS’ or ‘CIDP’ with The no-space Plus [+] and Policies and procedures Plus [+] IVIG…Most of it will/should focus on the diagnostics, enlightening true, but the ‘exclusions’ of the experimentals is where we as patients have to be positively vocal…in terms of our rights and all. Those on medicare are less fortunate, ONLY THOSE who have Primary or Inherited immune conditions can benefit from IG therapies.
      I’ve read widely and Sub-Que infusions are great for many, either with Primary or Secondary[acquired] immune issues.
      Since IVIG is not currently allowed as therapy for acquired immune issues under medicare …unless thru either a subsidy plan or other additional plan [usually with hefty co-pays etc] for us the future can be dismal…unless we speak up either thru the GBSFI or other resources.. I am not now eligible for Medicare nor will I be for a few years, but, I can see how many pot-holes in the road are developing.
      My ears to the ground also imply that IVIG clinical testing for Parkinsons is showing a far better result/improvement in that quarter as well. This will put an additional pressure on IG demands and may possibly cut us off? Who knows. I was surprised to learn of this, as the last Parkinsons testings reports I’d read showed an only 20& response rate to IG infusions… What I do not GET is that IVIG has been an ‘off-label’ approved use by many insurance companies for GBS AND CIDP for decades, but is not yet an FDA approved use?
      I would think that the GBSFI and others would put vocal and easily documentable pressure on those who have not considered IVIG a candidate for the FDA approved lists…apparently the manufactureres have no incentive rite now…I do not know. Obviously I am frustrated, but I can see a lot of bad ‘ripples’ down the road as to our eligibility for IVIG and then our insurance coveranges… Ok, I may get put off by all this, but it is a whole and true frustration on my part for the long term… It is a wholly scary vice to be put into, involuntarily and without full knowledge… Sigh.