Subcutaneous IVIG

    • Anonymous
      March 17, 2008 at 10:55 am

      I just learned that there is a subQ IVIG product. Does anyone here receive that? Or is that not appropriate for CIDP? Any input would be great!

    • Anonymous
      March 17, 2008 at 3:49 pm

      Greetings from the east side of the Pond.

      SCIg is used primarily for those with primary immunodeficiencies, but as I understand it some neuros in the USA are trying it on their CIDP patients–who and where I don’t know. It’s about half the price of IVIg and can easily be administered at home by the patient via a pump similar to insulin pumps used by diabetics. SCIg can be administered in higher doses over a shorter period of time, so it would alleviate the sitting for hours in hospital while the Ig is pumped into our veins.

      It’s early days yet, but looks promising.


    • March 17, 2008 at 4:45 pm

      It has been discussed here before. I also asked the immunologist we saw two weeks ago as he is involved in many studies concearning ivig. He said as mentioned above, it is usually used for immune suppressed people.

      Personally, I am worried that more would be absorbed into the body instead of going directly into the blood and working to overpower the auto antibodies.

      Last year during one of my many sleepless nights on the computer I read of a study where they are trying to isolate exactly what cidp people need from ivig and that it could be administered as a shot instead of the long infusions. I have never read about it again, but maybe the next time I am up searching, I am going to try to find that info again. I hope that day comes sooner than later, because these treatments are messing with Kevin’s head. It is so hard for him because he knows he is going to be sick. I keep telling him at least we have medicine that works, and that scientists are always working on cures.


    • Anonymous
      March 17, 2008 at 9:27 pm

      I guess that was my mistake calling it IV ig instead of SC. I wasn’t paying attention. Sorry about that:) I did read about it’s use for immuno suppressed folks and that is not our problem. I guess I am looking into whatever I can since every two weeks is not holding me and I was thinking how am I going to get anything done if this goes to weekly or twice a week like some of you? Thanks…..

    • March 17, 2008 at 10:15 pm

      Do you infuse at home? I think I remember you sayiong you are in the health care profession, so would you be opposed to the nurse starting you (if you had a port) and then using a fanny pak so you could go about your business?

      Kevin is still adjusting to things, but this would be my ultimate goal. Right now regarding change, it is baby steps for Kevie. But it would be great to do the fanny pack, it would allow him so much more freedom. We have the coolest nurses in the world, I am sure they would not be opposed to going outside, or to the movies, or what ever. Heck, Kevies male nurse drags the iv pole around as it is, and he and Kevie shoot the airsoft guns in the basement and play guitar hero on xbox. Can you imagine how much fun they would have shooting outside?! (I would have alot less mess to clean up too!!!)

      You could still do errands, go shopping, out to lunch, whatever, if you had the fanny pac. If you did not feel comfortable without a nurse, I bet it would be no problem convincing the nurse to go out! Good luck!
      PS, everytime I post to you, I love saying your name, it is such a beautiful name. If I had a girl, I would name her Gabrielle!

    • Anonymous
      March 18, 2008 at 4:40 am

      [QUOTE=Dawn Kevies mom]

      Last year during one of my many sleepless nights on the computer I read of a study where they are trying to isolate exactly what cidp people need from ivig and that it could be administered as a shot instead of the long infusions. I have never read about it again, but maybe the next time I am up searching, I am going to try to find that info again.


      Dawn, I remember that article – it was a sugar wasn’t it? I can’t remember the details now but it seems like they found it was actually a sugar that is in the IVIg in microscopic proportions that was the key ingredient and they were working to isolate/replicate the sugar so that we could just get a shot of that every three months or something. Ugh. I can’t remember the details now but I remember being excited about it. I’ll see what I can find today too.


    • Anonymous
      March 18, 2008 at 10:12 am

      Thanks guys! Any information would be great. I am going back to the neuro next week and will ask him as well. Dawn, yes I am an RN, even so I goofed up IV ig and SC ig:) Go figure! I am now getting infused at home which is fine. It is every other week and the last time the nurse came and started my line and left. I did all of the infusion after that including Solumedrol and pulling my line. I am sooo good:) It’s not like I have a lot of stuff to do really because I am home almost all of the time. But if I want to go out, I guess they could hook me up to a portable pump or something if we get to weekly or more frequent. I am pleased with my results, but it just isn’t holding past a week. So I am superwoman for a week and barely able to finish anything or walk, etc for the other week. When I saw the SC, I was pretty excited thinking I could be getting it all the time as a steady stream and maybe that would hold me. And thanks for the compliment about my name. I didn’t like it when I was little since no one else had that name. Now it is more common. Actually I have had one of my clients name their baby after me last year. That was a huge compliment…..

    • Anonymous
      March 21, 2008 at 1:40 am


      I have the press release about this, but I am too tired to look for it right now. If I recall correctly, it was not that there was a sugar molecule to be isolated out of the Ig. Instead, it was that a particular type of sugar linkage within the Ig caused the Ig to act as an anti-inflammatory agent.

      It was pretty interesting at the time. I suspect that we haven’t heard much because isolating the Ig with that particular sugar is very hard and they have not had much success yet. Even if they do figure it out soon, it will take years to scale the isolation process up to commercial quantities and make it through the FDA approval process. Still, it is good to know that treatments will get better in the next decade or so, even if we don’t arrive at a cure.


    • Anonymous
      March 21, 2008 at 4:58 pm


      I am not sure that I read the same article as you did, but I believe the sugar you are thinking of
      is sialic acid. I remember it well, because when my daughter first became ill, I was puzzled how
      the very protein (immunoglobulin) that caused such destruction of nerves could also be used to
      treat it. This is known as the IgG Paradox. From what I remember, in cidp (and mabe gbs, not
      sure), the immunoglobulins lack sialic acid on a terminal end of the Ig chain. It is thought to
      have inhibitory and anti-inflammatory actions in autoimmune reactions. The context I read it in
      was an article where Canadian scientists were trying to develop an artificial ivig product that was
      a concentrated formula in response to the shortage and expense of regular ivig.

      In the mean time, we do have the sub-Q, which is a concentrated formula. It maintains a more
      consistant level of Igs in the blood than ivig because only small doses are infused several times a
      week. Originally it was used for pid patients only, but has gained popularity for patients
      suffering allergic reactions ivig. Here is a link to a presentation for medical personnel I
      posted in a previous thread that has good data and pictures of the pump and proceedures.



    • Anonymous
      June 17, 2008 at 8:09 pm

      Hey guys, I am really interested in this:
      1. It seems like it levels out the ups and downs of weakness
      2. I get aseptic meningitis (headaches) the 4th day or so and maybe this could alleviate.

      Will let you know if I’m able to get it.

    • Anonymous
      June 28, 2008 at 8:56 am

      Gabrielle-I had checked a few months ago with my neuro about getting the subq ig-I think I will bring it up again..the last time it was an insurance reimbursement issue and I couldn’t afford it. It certainly has to be a whole lot cheaper than ivig-exciting to think there is something on the horizon for us, right? Oh and I love your name and I talked about that before about our names-I never saw my name till I took care of a patient when I lived in Tennessee during a few years of travel nursing. Now it is a very popular name. Go Figure!! Hope you didn’t have as many nicknames in school as I did,ugh. Anyway, have to get ready for day#3 ivig. Hope you have a good weekend Gabrielle. Emma