I was the biggest cheerleader for Stelara since I participated in the clinical trials in 2006. Been waiting all these years for it since I have been through Humira, then Entyvio, then Remicade.
Even went on a consultation in 2016 with one of the worlds expert in Stelara, Dr Gil Melmed, which led the UNITI 2 study of Stelara that had 297 patients. I was so excited to finally getting to FDA approval.
Had the infusion and experienced very good results. I went through several phone numbers, was in constant touch with the Stelara nurse navigator, tried multiple ways to get in the patient assistance program. Rejected at every point since I was on Medicare and was also exceeding the maximum income and they counted my wife's pension as well.
I tried starting with the injection being given by a nurse at the hospital. The infusion center did not want to do injections, eventually I found the nurses that will go to your home to give injections. The hospital was going to order the injections, the specialty pharmacy was quoted with a 20% I needed to pay at $26000 for six injection pack (I could buy a new car every year at these prices). These injections need to be refrigerated to last a whole year. If you are new to Stelara and find after a few injections that it is not working, you are stuck with the rest.
Now I am using BriovaRX and injecting at home. The first injection was $3680! and the rest are $1200 each with Medicare limits. That comes to $9,600 a year, I still cannot afford it but it is my only choice at these point.(any other ideas ?)
My suggestion that are new to this is to get quotes on Humira, then Entyvio(did not work for me), your out of pocket costs are lower than the outrageous Stelara costs.