Treatment for ADEM with cyclophosphamide or rituximab

Hi all,

My father is being treated for ADEM and unfortunately has not responded to treatment after being diagnosed in 2010. His condition is very unfavourable at the moment. His treating professor in Australia is Professor Bruce Brew and he has suggested my father consider treatment of cyclophosphamide or rituximab as a final hope. I was wondering if anyone has under taken any of these treatments. I would love to hear about the side effects and both positive and negative results. Thank you - Stacy

Could you tell us about his course

What all have been tried

Stacy, I would like to know what you have had explained to you about this treatment? I haven't heard of it. I'm sorry to hear your father continues to have problems. What is he experiencing. My husband also is not really recovering as first explained to us. We are currently going through prednisone again. He has nervy sensations across chest and back, weak hands, fatigue, dizziness or medicine head feeling, trouble swallowing to an extent, he is down to 115 pounds. I feel like I am being a pest on this site, but I am learning a lot and trying so hard to find something that will work for him. I will be looking up the cyclophosphamide and rituximab.

Thanks for the reply. In 2010 he started off with stroke like symptoms, his face had dropped and speech slurred. With in days it got much worse. He lost most of his vision, slept 80 percent of the day and started to loose sensation down one side of is body. After much testing his was told his symptoms are of closest match to be diagnosed with ADEM. The doctors have not been completely convinced that that is his condition but it is the closest condition they can diagnose it as. They have been treating him with Methylpredisolone, octagam, apheresis every month. This has been occurring for about two years. Initially he seemed to respond slightly. He seemed to be getting a bit stronger but in the last 6 months the treatment does not appear to be helping or holding his current state, in fact his treating professor has just told us that he has got worse.

To date he can not walk without assistance, it is hard to swallow or eat normally without coughing. Limited vision, constantly vomiting due to being dizzy. Sleeps most of the day. Very weak and lack of energy.

His treating professor said as a last resort as the other medication is not working we could consider treatment of either Rituimab or Cyclophosphamide. We are told that rituimab is a harsh treatment but cyclophospahmide is even worse. We are more considering cyclophospahmide but are still researching. We are concerned his body may not be fit enough to make it through the treatment, this is also the treating Professors concern. But if we stop his current treatment he has a life expectancy of 3-4 months (keep in mind keeping his current treatment as mentioned above, his condition is getting worse), on the other hand there is no guarantee that treatment of Rituimab or Cycloposhamide will work for him either but it is the only other type of treatment they think he may have a chance of responding too.