So, here I am again with another question... About ivig this time.

I want to know what happens with your MG when you do a 5-day round of IVIG only once. If it works, and you're less weak but you don't do it as a chronic treatment, the MG weakness probably gets back in weeks / months.
My question is; will the severity of the weakness be around the same it was before the IVIG, or has someone experienced getting worse after the effect has worn out?

And, to add: did you only get IVIG or was it combined with an prednisone IV?

Thanks again for any help or answers or whatever. I'm really thankful for you all

(For MG I'm currently on mestinon and prednisone only).

[rockenmama]

Originally Posted by Ravenclaw

So, here I am again with another question... About ivig this time.

I want to know what happens with your MG when you do a 5-day round of IVIG only once. If it works, and you're less weak but you don't do it as a chronic treatment, the MG weakness probably gets back in weeks / months.
My question is; will the severity of the weakness be around the same it was before the IVIG, or has someone experienced getting worse after the effect has worn out?

And, to add: did you only get IVIG or was it combined with an prednisone IV?

Thanks again for any help or answers or whatever. I'm really thankful for you all

(For MG I'm currently on mestinon and prednisone only).

I'm "new" to all this since I'm still trying to recover from first major exacerbation. I got a round of Ivig for 5 days in the middle of January. While in acute rehab hospital I ended up getting worse than I was before first round of Ivig. Got second round of IVIG and started prednisone and am doing well. I'm still in rehab hospital but I'm looking to go home sometime this week. Now as far as how things will go once home or when Ivig wears off who knows. I'll be talking to my Neuro on Monday to make sure we have a plan. She had asked me to read up on Cellcept and Imuran because she would like me to start taking those but wanted to make sure I'm educated about them first before making my decision

Also remember everyone reacts differently, there is no real way to know how you are going to react until it happens. I was also told that even if you are on great meds, doing everything right etc that an exacerbation can still happen

[Juanitad]

IVIG is not a cure for mg. It is simply a way to support your body so the mg affects you less and it does wear off over time. The most common way IVIG is given is monthly with a dosage of 2 gm/kg of weight monthly (spread over 5 days). However, if this doesn't work for you, you can change up the dosage and timing. I have been on IVIG for about 10 years and am currently doing .50 gm/kg of weight weekly. I work with my neuro to do what's best for me and I think I've had every combination possible over the 10 years.

IVIG doesn't work for some individuals, but I believe the majority of us who do use it, use it help manage our mg and I can't imagine what my life would have been like without it.

Hope you find what works for you and you get your mg under some sort of control.