soliris and meningococo

[maria vicenta carratala rios]

is a high risk the meningococo when using Soliris in a child?

 

[Jodi Kayler]

Hi, According to the original clinical trials for the drug (for PNH), there were cases who developed Meningitis due to the C5 complement being inactive. In an effort to minimize the risk, it is being recommended to get the vaccine prior to the start of Soliris. In my son's case, he got the vaccine prior to starting the Soliris but as an extra safety measure was also was on Antibiotics for a period until the vaccine could take effect. Some of the other kids are also on a low-dose of ongoing antibiotics to reduce the risk. So far, I haven't heard of any aHUS cases on Soliris, experiencing Meningitis but I would still encourage anyone considering it to take every precaution.

[Linda Burke]

YES, there is a risk of meningitis listed on the package insert as a side effect of Soliris BUT.....
When Skyler received the vaccine to prevent meningitis, we were supposed to wait a set period of days before beginning Soliris - but we cut that 'wait time' short by several days and began Soliris infusions earlier than advised by the drug company's insert for Soliris. According to one of our nephrologists, the risk of meningitis using Soliris wasn't that much more than Skyler's risk of meningitis from receiving multiple blood products via his plasmapheresis.
I've been told that the vaccine for menigitis targets 3 of the 4 bacterium - however there is no vaccine yet available for the 4th variety of meningitis! Since work is still underway to create a vaccine that includes the 4th (supposedly quite virulent) variety, we've opted to follow the two aHUS Soliris patients preceeding Skyler and be proactive.....Skyler continues to take 250 mg of amoxycillin (in a single pill) once daily, just as a precaution since amoxycillin, while quite a mild antibiotic well tolerated by most, specifically targets the specific bacterium in question.
Definitely have the vaccine before beginning Soliris - it's up to you and your doctor if you're more comfortable putting up with a daily dose of a mild antibiotic until the vaccine for the 4th meningitis is created, or if you're still comfortable that 3 of the 4 meningitis strains taking care of most of the risk.
Hope this info helps....

[Linda Burke]

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