Claire-M - struggling with pain from immunology treatment

Hello

Just started immunology treatment struggling with pain paracetamol ok but still waking every night discussed oramorph with consultant yesterday but I  didn't want get more side effects from another drug, but now wondering if I should have agreed to try as fed up with breakthrough pain every day and especially at night with 6 hrly paracetamol.

  • Hi Claire
    I'm waiting to see if the MDT recommended me for Cemiplimab immunotherapy. And am trying to find out how tolerable the treatment is from the viewpoint of patients. Is it OK to ask which immunotherapy drug you are receiving?
    I did not know that pain was a side effect.
    I agree that paracetamol 6 hourly is often is not good enough to keep pain at bay and also appreciate your reluctance to accept morphine which brings its own set of problems.
    After recent surgery I was told that I could take ibuprofen in-between the 6 hourly paracetamol schedule, which did offer slightly better pain relief. Obviously get professional advice before doing this.
    Best wishes for your ongoing treatment.
    Ed

  • Hi Ed

    Mine is a different immunotherapy callled Pembolizumab. But my pain may be caused by the position, effecting nerves etc so I don't want to worry you about immunology meds causing pain,I don't know if that is correct.

    Yes ibuprofen was discussed but again as I understand it that is better as short term maybe after your surgery but not in my case Dr felt long term ibuprofen has its own issues lol can't win really can we!

    I have since decided to try out a small dose of oramorph,with omeprozole to protect my stomach, maybe just to help at night, the regular hours up in the dark & now chilly nights, out of bed is exhausting and doesn't help me mentally or physically next day!!

     I will let you know how I get on as soon as I manage to get a prescription!

    Claire.