Hi Celeste
i have been suffering with debilitating arthritis/myalgia since March. Especially in the mornings, I am unable to move even to turn on my side or bend my knees or even turn my head. It improves during the day and I lead my life ok but can't work or move very well.
My oncologists have sent me to a rheumatologist who has sent me for every scan and blood test known to mankind (spine and shoulder mris, bone scans etc) so a diagnosis of arthritic spondylitis has come back. Now I have to go for another scan to confirm and more bloods and he has put me on ketoprofen on top of the 25 mg steroids I've been taking since March. Previous antiinflammatory (inza500) did nothing
this rheumatologist is very scientific so he will not assume that my problem is drug related and wants to eliminate all other possibilities first (I was on keytruda for 11 months and stopped in August)
as there was sarcoidosis also found back last June when they biopsied my lungs he is going to try to treat this as pertaining to that condition first
now I have have to see an eye specialist as he wants to try me on plaquenil ( in three weeks time) which should be effective if the sarcoidosis is causing the problem
Because of your kind suggestion in another post, I mentioned infliximab to him and he does not want me to have it as he says it causes melanoma even though it is the normal go-to drug for the sponylitis
so to my question to you: do you know of any cases where someone has taken infliximab and stayed with stable tumour or NED?
my gut feeling is that the pembro has worked incredibly well, so well that my immune system has gone the other way, but the dr disagrees. He may be right as I really have not found one other person with these symptoms
best wishes Anne-Louise
