I’m reporting on my experience with Journavx. I am on a beach vacation, which involves flying, walking a lot, walking on sand, balancing my body in the water, etc. My neuropathy pain is not well controlled because we are trying different medications, and I’m not well medicated ( that’s a long story). My wonderful PCP agreed to give me a week of Journavx. My other doctors didn’t feel comfortable using it off-label (chronic pain) for their first patient.
I took the 100 mg loading dose Tuesday night. Within 45 minutes my toes stopped burning! This is day 4 of 50 mg twice a day. I feel very mild small fiber neuropathy pain and burning, but it’s really diminished. I feel like 75 or 100 mg twice a day, or actually more frequent doses (6-8 hours) would be life changing.
I think this medication will be very important for the neuropathy community. Just a few tweaks, and some individual dosing.
My experiment ends in a few days. Not sure if I will be able to get more. And I’m on Medicare, so had to pay $57 for one week. At this point I wouldn’t care about the price!
There is a coupon, but you can’t use coupons on Medicare or Medicaid.
Don’t ask me a lot of questions, because I’m at the beach relaxing!😌