Read something about it in IG Living Magazine. Was under the impression this was for PID and in 3gm doses. I wonder if there is the possibility CIDP patients could use this? Anyone have suggestions to where we could go to find out. I will send email to the IG Living Editor and see if I get response.

Ron

Great topic!! I just saw one of the Neuros at SHANDS in FL yesterday and we were discussing sub q IGG. He told me that it is available in any dose needed and that the incidence of reactions to the IGG is much lower than IVIG. Sub q IGG is a lot easier to administer and most patients are able to give it to themselves. It is administered through a small pump similar to an insulin pump. No more hospitals, infusion suites or visiting nurses. I have been getting IVIG since diagnosed 9/05 and get treated every 14 days. Not to mention the numerous doctor appointments and lab tests. The Neuro is going to call my hemo and ask him to give me a trial on the sub q IGG. I’m looking forward to a bit more freedom. Hope this helps.

Blessings,
Barbara
CIDP 9/05
Seisure Disorder 12/04
MS 6/90
Lupus 12/89

Called my Neuro at OSU and spoke with his Secretary to ask about sub q ig. I am concerned about shortage and the possiblity of having to change brands and having a bad reaction. Neuro said it wasn’t bad reaction I had last week but possibly a relapse. They put me back on 20mg daily of prednisone again. Will post answer I get from him.

Ron

Ronald,

Please let us know how this works for you.

Best wishes,

Suzanne

Greetings,

Is Sub IG given in the muscle instead of the vein. My Doctor told me that hopefully “soon” I would be able to have my husband give me my IVIG in a shot form that would go into my muscle. Is this what you guys are talking about?

Thanks

Julia

My Neuro at Ohio State had his Secretary call to say that he was looking into it to see if it would help neuromuscular patients. Will keep in touch and let you all know what he has to say. I have a great deal of confidence in this man and he is considered by many to be the best in this area.

Ron

Seasons Greetings Everyone!

Sub Q IGG is given into the subcutaneous (fatty) tissue under the skin, not into a muscle. The pump solution is concentrated and administered through a pump similar to an insulin pump that diabetics use. It wouldn’t be a large amount like we get for IVIG. The amount would be much smaller and concentrated to fit into the pump.

According to SHANDS Neurology Dept. they are having great success with sub q IGG for CIDP patients. It tends to give the patient more freedom and they won’t be tied down to such a time consuming schedule. There is an article in the new issue of I.G. Living magazine with statistics and information about using sub q IGG as opposed to IVIG.

Hope this is helpful and hope all enjoy your holidays!

Barbara

Thanks, Barbara, for your encouraging post. When Vivaglobulin first came out, I asked about it for my daughter, but was told by the doctors it was only available to pid patients. (read: approved for pid patients) I took another look at that article in IG Living, but it only confirms this position.

It would be great if just one person were able to break past this barrier, and post their news here. I know that I’ll be looking at it again. The benefit we would most look forward to with this approach is the consistent levels of IG in the blood – no more peaks and valleys.

There’s an excellent powerpoint presentation highlighting the proceedure at an educational site here:

[url]http://www.clinimmsoc.org/teaching/slides/subcutaneous_ivig/index.php[/url]

cd

Hi CD,

You are correct that the FDA has only approved sub q IGG for pid at this point but from what I understand most people with CIDP also have a primary immune deficiency. That is what my hemo has told me. He feels that most would be good candidates for the sub q administration of IGG.

Thanks for the web address for the procedure. I’m sure it will help a lot of us.

Blessings,
Barbara

Hello Barbara, I talked to my neuro about your post about Sub Q IGG at SHANDS. He wanted to know which doctor you talked to, he knows some of the doctors up there. I live in Florida. I’m trying to switch from IVIG to Sub Q. No one here has heard of it before.
Darinlee

Ok, dumb question, but what is “pid”?
Linda

primary immune deficiency
Dawn

I read the same thing and was wondering the same thing:confused: