Living With TRAPS

Hi Everyone,
I am a mother of two ault children who have struggled with TRAPS since the ages of 16 and 20. It took years to get a diagnosis. They were both diagnosed by genetic testing in 2008. My oldest daughter struggles daily with fatigue and muscle and joint achiness, but her flares are pretty well controlled with enbrel. My youngest daughter, who is now 28, lives at home and is disabled from TRAPS. She was on Enbrel and having episodes every six weeks that would last up to four weeks. She was switched to Humira weekly injections, but she had another episode after eight weeks. She experienced fevers that came and went for ten days, along with musle pain, severe headache with pain behind both eyes, skin pain, abdominal pain, nausea, vomiting, and chronic fatigue. Basically she hurt all over. She was started on prednisone and responded amazingly well. We cried to see her able to eat again. Her prednisone dose was slowly tapered down over the course of a month. She took her last dose two days ago. Her TRAPS symptoms returned last night. Prednisone , we understand, is not a good long term solution. Her doctor is talking about starting her on methotrexate. Does anyone out there have a similar story? We are searching for answers. It is so good to connect with people who understand.
marylouise