Happy to share
He seems to feel the best after a Solaris treatment.. A couple of days before treatment he seems a little more tired and his counts drop a little. It's something we are trying to keep a closer eye on to see if he needs to switch to 12 days instead of 14 days between treatments. I think this is mostly due to his SAA and the medicines he's taking for that.
Sooo...long story, yes the Solaris has helped w the PNH part of his Dx
it also has shown that a lot of people we at a lower risk of getting a clot on Solaris , so that's great news!
No he never needed antibiotics w Solaris. I have heard a couple people do but I think that's case specific. Maybe white cell counts, lifestyle, clone size? He takes loads of prophylaxis meds now bc of the cyclosporine affecting his immune system to treat his AA.
All in all the Solaris has been great. Easier then what most medicines are when infused(time etc). Blessed our insurance covers it! And less side effects then some of the ads I hear on tv!
it's so good your educating yourself! You may look into contacting a nurse case manager before you start (if you do) to answer some questions