Hi, Thanks for your posts on the RETINOID issue which i left.
Following on from that i was told this week that i will be going into hospital for some treatment, to help with my bone pain and skin pain.
I was wondering if anyone has had PAMIDRONATE Transfusions before?
I no here in the UK it is used allot in children and adults with EB & EHK. The dose for a child is as much as an adult dose and for an adult it it 2-3 times higher.
The treatment is given by an IV line into your vein, the medication is put through a Drip for 5 hours every day for 3 days, then after 3 or so months it all gets repeated again. The side-affects can be pretty nasty, but can be well tollorated. (All be it, reccomended and not higher dose)
I have never had this treatment before, this will be my 1st time. I am very nervoius about it and wondered if anyone has experienced similar to me.
Thanks for your help.