[pingpongman]

http://www.stltoday.com/lifestyles/h...d7caad163.html

[Stellatum]

This article is describing Hizentra. You can read about it here. http://www.hizentra.com/ I once asked my neuro if we could try it, and he said that he was unwilling to because he has no experience with it. I think that's one of the problems with getting treatment for MG: it's a neurological disease, but some of the treatments are more under the expertise of a rheumatologist.

Abby

[4-eyes]

This isn't really new, even for MG. On another group years ago there was a woman using it quite successfully for MG. When I asked my infusion company about it, I was told that yes, they could provide it, but due to the dosage I require, it would not be reasonable as I would need numerous needle sites each infusion and it would have to be done more frequently. Of course the cost of the med itself (and the subsequent insurance issues) would be identical. The side effects are also the same as regular IVIG.

So, in summary, it seems to be an option that will work for a certain percentage of patients who meet all of the parameters, but it will not be a new "universal" treatment for folks with MG. That's pretty much the story with MG, isn't it?

[AnnieB3]

Do you remember this conversation, Mike?

http://neurotalk.psychcentral.com/sh...light=hizentra

I wonder how Tyson is doing. Has anyone heard from him?

Hizentra (subcutaneous/SubQ version of IVIG) doesn't give you as much of a "punch" as IVIG but it does work. Walgreens has a program where they train you how to do it. The more knowledgeable neurologists don't hesitate to try it, especially with patients who have vein issues. And who aren't squeamish!

Annie

[pingpongman]

I have wondered about Tyson many times. I pray he is well.
Mike

[Quandry]

There was a small study:

http://www.neurology.org/cgi/content...tracts/P07.217

[Tracy9]

Okay so this is Sub Q Ig basically?

[4-eyes]

Yes. Nothing really new efficacy-wise, but allows more people to be independent with the administration of it.

[Interested]

Originally Posted by pingpongman

http://www.stltoday.com/lifestyles/h...d7caad163.html

Thanks for this information! I have also read about the MG vaccine that Dr. J. Edwin Blalock developed at UAB. This part of the study was funded by the Muscular Dystrophy Foundation and the vaccine did work on rats and dogs. However, when it was time for human trials in 2009 he ran into problems getting funding because MG isn't that common and pharmaceutical companies didn't feel they could make make enough money off an actual cure.

Dr. Stephane Huberty from Belgium partnered with him, but had funding and waiting problems too. Disgusted with waiting Dr. Huberty who is also a MG patient injected himself with great results. Curavac is the company the doc is using to continue work on this vaccine and trying to collect enough money to continue with human trials.

Hopefully, this study doesn't end because of lack of funding. It is a shame that greed seems to play such an important part in the history of pharmaceutical companies and rare diseases don't appear to matter.

Praying there is a cure or treatment with few side effects available to all of you soon!!!

Interested

[cait24]

Interested, this is very hopeful information. Do you have a link to any of the study results?


thanks
kathie