Reply To: For those who get regular IVIG infusions, how often do you get them?
My hubby has been diagnosed with MMN….. after 4 neurologists
We are at CIDP approved Dr.
he first tried 60mg on presidone for 6 weeks was horrible no sleep and thinking
Was altered…. stopped that with our latest Dr putting him on IVIG..
Dr. Has him on IVIG for past 4 months
150mg over 3 days outpatient then 150mg 3 days outpatient. Last 2 month 180mg over 3 days at home IVIG.
Every 4weeks they say. Now we have 3 more months of 180mg over 3 days…at home to see
If we can get him feeling stronger in hands and lower legs. First 2 months he felt stronger. So we are hoping this huge dose… highest available for next 3 months
Show better improvements. Is this a normal dose??
He gets a bag of water, and take a Benadryl and 500 mg Advil
He has had headaches so he drinks a ton of water now before and after for days…
He has had 3 gout attacks which he rarely gets so must be IVIG anyone else experience this side effect?? His arms are sore and swollen after 3rd day.he is a hard stick so
Nurse only uses his hands….. and one time all his joints were achey… so I see all have different side effects?
I pray they are on target with his diagnosis…. they did 4 months ago think CIPD
Then ALS…. now MMN.
He has trouble with steps and balance and left side lower leg and left hand 2-3 fingers and his strength is gone from his normal. Started PT but hard for him.
So maybe this IVIG is keeping him stable..
Thank you for any suggestions.. sorry for long post