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Old 07-16-2016, 10:39 AM #1
ErinBear ErinBear is offline
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Default Problem with IVIG treatment

I have been receiving IVIG infusions every three weeks since April. It's been helping. I had the latest infusions this week on Monday and Tuesday. I wasn't feeling well when I went in for treatment. I was having a lot of MG symptoms and feeling very rough, but I assumed that the remedy was having the IVIG treatment...that's what the doctors would probably say. I had the treatments and this time, it's very odd. It didn't really seem to help very much. Usually it helps quite a lot. I am still having a lot of difficulty with breathing and walking, and other things are difficult, including vision and swallowing/eating. Have other encountered this? I don't know why the treatment didn't go well this time when it previously went so well.

I tried to contact my doctor, but there was no response. I don't know what to do in this situation. If anyone has any ideas or suggestions, I'd be glad to hear about it.

Thank you,
Erin
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AnnieB3 (07-16-2016)

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Old 07-16-2016, 11:48 AM #2
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I got a lot of IVIG treatments when I was on Imuran. When I switched to Cellcept I no longer got IVIG. When I was getting them they seemed to do nothing. Prednisone is the only thing that really helps me. Remember we are all different.
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Old 07-16-2016, 11:54 AM #3
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Erin, You may have pushed your MG too far, and now it will need further treatment such as IV Solu-Medrol (steroids). If you are doing that badly, you know where you need to be! Yup, ER.

It's summer, guys. What we could do in the cooler months we can't do in the summer. It tanks most everyone's MG very quickly.

The worse you get, the longer it takes to recover. And usually more meds.

I'm sorry you're worse, Erin! But wishing you would be better won't work. Go to the ER and tell them you need to be evaluated for a MG crisis!!! DO NOT WAIT until it becomes even worse!


Annie
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Old 07-16-2016, 11:33 PM #4
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I have been on IVIG for about 10 years and I have learned that it is not a bad thing to mix things up. I went from monthly to bi-weekly to weekly; spreading out the same overall dose. I have also gone back to bi-weekly for a while, but am now back on weekly. I get a smaller dose once a week rather than a large dose monthly (spread over 5 days in a row). When I feel the mg is catching back up to me, I call my neuro and we discuss my problems and he helps me make a decision.

Hope you find what works for you.
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