Biologics and Cutaneous B Cell Lymphoma
KRG
03/04/24 07:01 PM
I am a 64 year old woman. I was diagnosed with ankylosing spondylitis when I was in my 40's. I have been on biologics for 13 years. During that time I had uveitis which was treated and has not been a problem since. I had no pain during those 13 years. For me, it was like a miracle to be pain free.
Two years ago I developed a red spot on my shoulder. My skin doctor told me to wait and see, and after another year she ordered a biopsy. The biopsy revealed Cutaneous B Cell Lymphoma, basically a form of indolent skin cancer. My rheumatologist promptly took me off the biologic I was taking at the time, Cimzia.
At first I did not have any spondylitis symptoms. It took about three months. for the pain to reappear. It started in my left shoulder, neck, and down to my left ribs and hip. The pain is intense at night. I can not turn on to one side or the other. In the morning I have trouble getting out of bed because it hurts to move.
My doctors are telling me that they do not want to put me back on the biologics because there is a chance that I will develop lymphoma, possibly a more serious type. I have so far been offered codeine, ibuprofen, paracetamol, arcoxia and tramadol.
If you have had anything similar to this, I would really like to hear from you. Are there any options besides TNF blockers or JAK inhibitors? Has anyone had experience with other medication options?