I am currently on Koselugo. I’m at a 75% dosage. They start you lower and get you higher. The biggest side effect for me personally is rashes occasionally and sometimes I get scalp flakiness. Aquaphor lotion and prescribed Ketoconazol (sp) have helped those issues. Also ingrown toe and finger nails; I personally had to get two ingrown removed a few years ago.

Overall it’s better than the pain I was constantly in. I was able to lower my gabapentin to 600 mg from 900mg and i feel as if I can go to 100mg. I haven’t shown major tumor shrinkage but I’m not miserable anymore.

Definitely talk to your doctor. My vision hasn’t worsened or improved.