Reply To: Recently Diagnosed

May 28, 2007 at 8:00 pm

The treatment plan for ivig varies for everyone depending on symptoms. Kevies is currently on a 6 week plan for 6 times (protocol I am told) to start a plan and then hopefully this will get the inflamation in check and then you try to stretch it as long as possible in between, This is Kevins plan, some people get it as often as every 7-10 days. Each person is different. Kevin is premedicated with zofran for nausea, benaydrl for allergic reaction and tylenol for pain, every 4 hours (except the benadryl, that is longer in between) I have learned on this forum to continue premedicating 24 hours after the infusion, we will do this his next infusion, because Kevin did not do well with his last infusion 6 hours post. Infusion rate is also a huge consideration, the slower the better. Kevin is a ten year old boy, he can only handle an infusion rate of 50 max. You may be able to handle more since you are older. There has been much talk about steroids as of late being very beneficial in quickly aiding in pain (cuts the inflamation I would assume) To me this is a personal choice, and I currently do not feel it is a choice we need to make since ivig works. You may like the option, and it may work for you, we just are not at that point yet, so I will save it if we ever do need it. This is a very complex condition to understand, ask questions, people will help and answer, this is how I learn every day. I mentioned this to someone else the other day, read all of the posts, it may not be something that pertains to you currently but it may pop up in the future. Good luck! You can e-mail me if you like. Dawn Kevies mom 😮