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My 17 yr old son has been on Soliris for 8 months.
He had never had a blood transfusion but has a very high clone. His LDH went down alot almost 500 points just after one treatment. It is a big commitment but worth it if it keeps him from having a major stroke or clot at his young age. He goes two times a month for about 1.5 to 2 hrs (longer for the first few treatments 3 to 4hrs) and he feels so much better.
He does however talk a daily penicillin, do to being in the 1% of people who got meningococcal even after getting the vacc. He also did not get a port, the risk of a clot at the port site is high for pnh and if you have good veins there is no need to risk it.
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Shelby, mother to son 17 diagnosed PNH in Spring 2012. meds: Soliris, multivitamin, folic acid, and daily penicillin
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