My husband was on nivolumab for 8 months but had treatment stopped due to it causing ulcerative colitis. He has been on steroids for the past 8 months and recently he is having a lot of jaw pain to the point it's keeping him up all night in agony it does subside a little with pain killers, has anyone else ever experienced this?
Hi.
It sounds really horrible, do you think that the steroids are causing this pain?
Maybe worth contacting the team to check if there’s medication that will help
I hope that he improves soon
Take care
Ann
Hi Hayleyc89.
I'm early days of my chemo journey but i did get sudden horrendous nerve pain in jaw as the initial IVs were administered on my 1st cycle. The pain went up through my neck to the jaw only on the side of my portacath.
Does your husband have a portacath?
If your husband's pain is nerve based and ongoing, he may want to ask his specialist nurse if Amitriptyline could help?
