Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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deleted_user 12/01/2011

Hello everyone,

I have bene gone for a minute, but Im back with good news. For the past two months I have been using a drug called Hizentra. Its like IVIG that you can do at home, by yourself, on your own time. I love it!

It has been working great, right now I do it once a week for about 4 hours a day and see improvements within 24-48hours. My doctor states that I can do it twice a week if I need to but its a personal treatment that I can do myself and it works. And when I feel that Im getting weak I just do a treatment,

Im off prednisone! Im taking cellcept and this new treatment and have been feeling great!

Wishing you all the best....

txkiki53 12/01/2011

good luck to you, I believe this is the same med that my nurse said one of his patients did. You inject it under the skin correct? I think Dan said this particular patient did it in the stomach area? I got on the site of Hizentra and read some, or should I say till my eyes gave out which did not take long.
Annette

deleted_user 12/01/2011

Hello tikiki53,

You can put it in your arm, stomach or thigh/leg. I put it in my leg (more meat-lol). I have noticed this treatment is good for me because I work FT and go to school.

newmugg 12/02/2011

This is great news for MG'ers. Happy it is working so well for you and it's good to hear from someone who is actually using it. Is it painful? Would love to hear more about it.
hugs,
sherry

catnap2 12/02/2011

Yes! Good news Teanna! More info please!!!

deleted_user 12/02/2011

This doesnt hurt at all. Its a simple pinch and the needle is as small as an inch or two. There are 8 needles, depending on your site (stomach, arm, or leg). You would place 4 needs at least inch apart. I use my leg so I have 4 needles in both legs. The treatment isnt painful at all and so far I havent had any side effects.

The treatments last 4 hours and I do them 1-2 times a week.

I had a nurse come to my home and show me how to do it twice. Depending on your weight, height, and age.. the medicine is put in a syringe and then placed on a small pump with the tubbing of the needle. The nurse will show you how to take it out of the bottle and into the syrine, this is very easy. You can even do the setup the night before and come home the next day and start the treatment.

The nurse can teach a family memer, spuse, child or anyone you wish to assist you if you are uncomfortable in learning or sticking yourself, the needles are really small.

Please try if possible, Ive heard its cheaper then IVIG and you can do it when you want!

Let me know if you have any quetsons.

billfig99 12/02/2011

Glad it's helping you, keep us posted with your progress.

pakam2 07/10/2017

Hello,

could You please tell me, where are you from? I'm thinking of using Hizentra, but looking for a doctor who could help me using it. Do you still take that?

MissSophie 07/25/2017

Hizentra is subq form of IVIG. My dad was recently diagnosed with MG last May and has ended up in the hospital several times not being able to breathe or swallow. Since he is having continued breathing & swallowing problems they are now starting him on IVIG at home. I was hoping they would start him on subq since it is so easy.

I am glad you are having such a easy time with it and a great response too.

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