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Hello Desiree
My experience with Soliris and PNH is clouded by the fact that I have these other diseases as well. But from talking to a lady whose only diagnosis is PNH, she said Soliris was a miracle drug in terms of her quality of life. So that is your pro right there. It is the only treatment that will cure PNH so long as you continue to take the medication.
The cons are first, its expense. It may very well be the most expensive drug in the world. But there are so few PNH patients that we're all worth the cost, right? As it is admininstered by IV every two weeks, it made sense to me to have a port implanted. The surgery for this is not awful and it saves veins from frequent punctures. Another con is that it needs to be given every two weeks. But what the heck, for an hour every two weeks to get quality of life and relief from the symptoms, that is hardly an inconvenience.
I'm sorry that your dad is feeling worse as time goes by. That's what happens with PNH. But the Soliris will reverse that and you will all be amazed at how much better he can feel.
Soliris is manufactured by Alexion Pharmaceuticals. They have some very knowledgeable and helpful case managers at OneSource Treatment Support. I'm sure that if you contact them at 1-888-765-4747 you'll be put in touch with someone who can give you more information that I can.
Don't despair - there is help for your dad!
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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