Reply To: Variants

April 4, 2012 at 10:54 pm

Hi Willem my husband who has MADSAM has been treated from the beginning with IVIG. His neuro. did introduce Imuran during his first six months after diagnosis. Within two weeks of starting Imuran he was in hospital with sepsis. So since 2007 he has been on 100 G of IVIG every 3 weeks. In the beginning before he learned the ropes (on this forum) he had a lot of bad incapacitating headaches and flu like symptoms. Forum members advised him to drink lots of water pre IVIG and during and to pre medicate with Benydryl and Tylenol and closely monitor the flow rate. Worked very well for him to follow those tips. My husband has mostly motor symptoms and very minor sensory symptoms. I know that people who are diagnosed with MMN (multi focal motor neuropathy) cannot take steroids. Hubby has not been on steroids as he refused them due to risk factors. He is 64 yrs. old and has minor cataracts, elevated blood sugar so those symptoms would be exacerbated with the steroids. So far he has been lucky to be allowed to carry on with IVIG as it is horrifically expensive.