IVIG question
 

I finished my first round of IVIG on 8/7. 5 infusions over the course of 10 days.

Decision to start IVIG occurred after a flare-up where at the peak I took over 1200 mg of Mestinon in one day just to keep breathing. The Mestinon was working (with no side effects that I always get when I take too much), but the relief wasn't lasting very long. Over the course of a few weeks with this flare-up I was still in the 700-800 mg of Mestinon a day pre-IVIG. Within a day of starting I was down to the 400 range, and now two weeks out from my last dose I'm down to 180 mg/day (actually only took 120mg yesterday).

Have to say I feel great, especially in terms of my respiratory function. Actually did pre-op respiratory function tests last week and didn't struggle at all.

So now wondering...how long can I expect the benefits from IVIG to last? Was scheduled for Thymectomy last Wednesday, but was cancelled the night before because the surgeon had a family emergency. I'm rescheduled for next Wednesday and am hoping the benefits hang on that long. Do you notice that your symptoms gradually get worse as the IVIG wears off?

For me, when I started IVIG, the benefit lasted about 5 weeks. It started to wear of gradually about 4 weeks and after 6 weeks, it was as though I had never had it.

But, I think it is different for everyone. I was doing 5 days in a row for a total of 2 gms/kg of body weight a month. 9 years later, I am still on IVIG, but I am doing 1 day a week, but still doing the total dosage of 2 gms/kg every month.

Hope the thymectomy goes well for you! Let us know how you are doing.

Juanita

So glad you are feeling better! For me initially, I felt great and I started to feel it start to wear off around 10 days afterwards.. that was when I was at the beginning of it all.. now It lasts almost 3 weeks.. I begin to waddle and have breathing issues/swallowing etc .. depends on hormones, stressors, illnesses etc as well.. Good luck!!!! IVIG is an amazing thing!

IVIG terapy
 

Hi,
I just finished my second round of IVIG. My first round lasted 6 weeks. This round has taken a full week to kick in. I hope this gives you the energy and quiets your respiratory problems. Good luck on your surgery!
Take care,
Sonomagirl