Revlimid

Zman
Zman Member Posts: 1
edited December 2022 in Multiple Myeloma
Thinking on going off this maintenence drug.I've been on for 18 months after stem cell transplant. Any thoughts from anyone who's been on this or who went off of it? My counts have been very good. I see the doctor every 2 months. Cost of drug worries us as $16,775.00 per month. I currently have Neuropathy pretty bad in the feet ( sides and top ) and they say going off may reduce pain and numbness. Thanks

Comments

  • lynniepoo
    lynniepoo Member Posts: 8
    I was on Revlamid for nine years but in my case I was never in complete remission. I changed to my current treatment which I’ve been on for a year. I know that if and when it stops working I’ll have to go on another treatment. I w have always been til MM is treatable but not curable so I understand that I have to be watched closely.
    There are charities that help with grants to help with copays. Normally you get help finding one of these charities. I have not yet paid my copays.
    I have neuropathy as well and take Gabapentin to reduce the numbness. It works pretty well plus he helps with my insomnia.
    If you can go off Revlamid without endangering your remission and your Drs agree I’d sure try. Good luck!!
  • tandias
    tandias Member Posts: 1

    I was on revlamid for 4 years after my stem cell treatment in 2015. I stopped taking it because of cost to my family and also the neuropathy was terrible. I ended up stopping all pain medication and nerve medications also after. My numbers was very low for years and this year my M spike went back up to prior levels but only active was showing in my hip. So I am going back on full cycle. I dont know if i stayed on the medication would have kept it at bay or not but I also felt at the time I did not want my body to build up a resistance to meds and not have it work. I was never in full remission either. Lowest spike was just under 1.

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