Hi my friend was diagnosed with SCLS 2 years ago when he suffered from an episode and required a fasciotomy on both his legs. He was then put on IVIG every 4 weeks and went on every 6 weeks for about 6 months with Dr.Druey approval. He has now decided to stop the treatment completely and didn't have his last IVIG infusion it's been a week since, he's aware of the risk with stopping the infusions. Hes had moderate headaches and some pain in his legs and joints. His physicians are going to monitor him every 4 weeks to see his progress without the IVIG in his system. I would like to know if anyone else has gone thru this and maybe have any advice in how to help him go thru it. Is there any specific symptoms from having withdrawls from the IVIG what's normal and what's not ?

Hello, My grandson Levi was diagnosed in March 2015 at age 2 and a half , as far as we know, the youngest person to have this terrible disease. He also had a fasciotomy at that time. He started having IVIG every month for about a year and then went to every 2 months and now is receiving a treatment every 3 months ( 2 so far ) . So far so good with no headaches or joint pain, so we are unaware of typical or specific symptoms from reducing treatments that dramatically and since he is not completely off not sure how much this helps except for others to know there is a very young patient who is/has drastically reduced treatments with no real side effects or withdrawals. Not sure if we will be able to completely stop but the trend is encouraging that that may be possible in the future.

Thankyou for sharing this. It is the sort of information we are trying to collect in the IVIG survey. Please go to www.capillaryleak.com. The password is alaska. It is urgent that we record these events, especially if there is a recurrence. What is most important is whether IVIG is, over time, able to effect a 'cure'