Ivig

[Jane1869]

Has anyone found that the r e treatment of Ivig as not been as affective after a short time of having the treatment . I had my 4th round and don't feel it worked as good as the other times .I also had a headache for around 3 weeks from the last day of treatment x

[hunkydory]

I have never posted because there does not seem to be anyone here. My 33 year old daughter diagnosed with MG in January 2016, Had surgery late March to remove thymus and found it had a very large tumor. The tumr is not cancer it is a thymoma, The removed all of it except for small amounts attached to phrenic nerves and aorta. Her Kaiser hospital just sent her to MD Anderson cancer research center for evaluation. She has returned to Hawaii for chemo and if the remaining tumor shrinks then she will go back to MD Anderson to redo her surgery to remove the rest and will probably get radiatin treatment after that. Antone out there with thymoma? She has never had IVIG treatments.

[RaeJ70]

I've had one course of ivig a fit gave me a bad headache also, are you taking immunosuppressants and steroids? Take care x

[hunkydory in reply to RaeJ70]

Hi Raeben 98. My daughter has MG and had her thymus remved in March this year 2016 and has had very little MG problems so she was on o medications.

Since she had a tumor on the thymus they started her on chemo yesterday and she had a full on MG flair up. She could not open one eye and could not see out of the other one. Her face and lips went slack and she could only slur her words. She could not lift her arms at all. They had to give her steroids to get it under control. That is the first time she had been given drugs for her MG. Doctors have been more concerned with treating her thymoma tumor as they could not remove all of it as it was on her phrenic nerves and her aorta. If they can shrink the remaining tumor she will be net to ND Anderson Cancer Center in Texas for more surgery to remove rest of tumor. I hope you are doing well and have found some sort of relief with your pain..