Hi Susan,
When I was first diagnosed in July 2015, I was on dex cytoxin then I took 1 revlimid pill and was super allergic to it. I was then put on velcade till my sct in Jan 2016. After my sct I was put back on velcade and was on it till Jan 2021. Dr. Took me off my treatment since I was in remission because of covid. Being off the velcade for almost a year neuropathy set in so when I went back on my maintenance treatment he put me on ninlaro. So far so good. I have been on ninlaro since Jan 2022. Not sure if it is causing more neuropathy but it seems to get better then it gets worse. Good luck to you prayers coming your way.

Started in May 2018 *Darzalex 3x's a week then 2x a week and Now Once a Month,, Also Velcade along side it every other Treatment.. Velcade is Done ... and then 25mg Revlimid for Months Down to 10mg and None Now.. I am Still on Darzalex with a Shot of XGEVA every 3 Months... I Drink Lots of water to flush & get Sunshine ... Stay Positive ... It is OK TO REST ...HUGZ FRED

I flunked out of Revlimid and the proteasome inhibitors early on. Your doctor might want to stretch this treatment out for a long as you get some control. Love Donna

I’ve been on Kyprolis, Dexamethasone, and Revlimid for almost 4 years, including a SCT at the beginning of that. I’ve been stable since then. My oncologist asked me to start Ninlaro, about 2 years ago. Very hesitant about that, since Ninlaro is similar to Velcade. Velcade gave me horrible neuropathy in my feet, hands, and around my body midsection. Going to Kyprolis made that neuropathy go away, except for some minor neuropathy left in my feet.

Hi Susan, I can t give you any useful information, though I was prescribed once Ninlaro, but I decided not to take it. It should be working similar as Velcade, it works slightly different, I mean it is chemically similar.
I hope the things will improve somehow in your favour.
Ulrich