Interesting, I just heard about this from my IVIG nurse. She was discussing it in relation to how you get IVIG, volumes, etc. She used to work for an IVIG co, so I can ask her more the next time (July 7) if you'd like
Be well,

Subcutaneous Ig Maintenance Therapy for Myasthenia Gravis (SIMM) is currently under clinical trails. You can find info at the below link.

http://clinicaltrials.gov/ct2/show/NCT01828294?term=myasthenia&recr=Open&rank=4

Please let us know if you decide to try. Will be very interested in hearing anyone's experience.

Bruce

I can only add something anecdotal. I have a primary immune deficiency and was given a few intramuscular ig shots many years ago to see if they'd help keep me from getting ill so much. This was a few years before my MG showed up. But honestly, looking back I see signs of MG even before then.

When I got a shot, for two weeks I felt like Super Woman. Never before or since have I felt like that. I didn't catch even a cold, I could run up the stairs at school and still feel great. Then it would wear off and I'd be back to my biweekly or monthly infections that would knock me down for 2-3 weeks (things all my friends recovered from in only a few days). They were hard to get at the time (possibly Gulf War time, I can't quite recall), and my doctor told me they did nothing for me. We'd go back and forth with me saying how great I felt, and him saying no.

Since I've been on this MG roller coaster there have been a few times my mind has wandered back to that time and pondered a bit about the shots. I tried web searches for intramuscular ig a few times but never found anything related to MG. Have never heard of subcutaneous until now. Haven't had IVIG so I can't compare anything. This will be quite interesting to keep an eye on.

Thanks for the info, everyone! All info is helpful.

To make the issue more complicated, my MG is severe and unstable. Changing routes of administration changes potential efficacy of the medication, which could be disastrous. Also, I found out that I would have to have this every week to keep my Ig levels constant and that there will be 3 injection sites with a high volume of fluid. If I were to have a reaction, there is no way to control the rate once it is set...I would have to clamp it off in an emergency as the only option. Also, sub-Q is 20% Ig and currently I am receiving 5% and still having trouble w/ side effects.

I have just finished an induction of 4 doses of Rituxan over the last month, so I am quite immunosupressed and healing injection sites could become an issue also.

In other words, this idea is not looking very good.

I am taking high doses of Benadryl daily to manage my body's immune system response--an ongoing histamine reaction to certain antibodies in IVIg. Has anyone found one brand of IVIg to be more easily tolerated or elicit less histamine?

Thanks!

Hi art chick,
Did you develop any kind of rash, coincident with receiving Rituxan?
(I did.)
- Ross

Yes Ross, after 2 of the 4 Rituxan infusions I woke up with redness on my face and chest. I get a similar looking rash after day 4 and 5 of IVIg every time. One immunologist said it looked like a flushing reaction because when I drew a line up my arm w/ my nail, it only sometimes responds with redness or what is termed dermatographia, or histamine. Another immunologist ran a lot of tests and found out that I am having an immunological response to antibodies and Rituxan is a monoclonal antibody and IVIg is made up of over a thousand people's antibodies. My situation is getting very complicated.

I had a lot of other side effects too but my experience always seems outside the norm, so I hesitate to post.

Don't ever hesitate to post, because something you say may help someone. I have a lot of weird reactions to stuff that doesn't bother others, too.