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Hey, Just joined this website, but then did not write for awhile because I was looking at a lot of older discussions. Just wondering if there is anyone out there that has recently seen Dr. K and is being treated for FMF or TRAPS. We think my son Stephen has a hybrid of both diseases (if that's even possible) He tested positive for TRAPS with a genetic test done at Duke University.
Hi there my names Marissa im 22 years old Iv had a periodic fever since I was about 6 . I havent seen doctor Kastner for over a year, but I have been treated for a periodic fever syndrome by him. I do not have TRAPS or FMF but have been tested for both of them as for a whole bunch of other Periodic fever syndromes. They all came back negative. I do have many of the symptoms of these diseases. If you ever want to chat you can reach me at Rissaroo23@aol.com
Hi! I have two daughters diagnosed with TRAPS. They were 16 and 20 when they first became sick. It took years to get a diagnosis. In January of 2008 my oldest daughter was diagnosed through genetic testing. My youngest daughter was then tested and is also positive. The illness has been quite disabeling, especially for my youngest daughter. Her episodes occurr about every six weeks. The fevers and pain have been challenging to control. She is now on Humira. The symptoms are less severe on Humira, but the frequency of episodes is unchanged. She recently responded incredibly well to prednisone, but you cannot live on prednisone for too long. We are searching for answers. I have found that people are impacted in different ways from this illness. Some respond more readily to treatment with Enbrel or Humira than others. Don't be discouraged by what I say. We may be comparing apples to oranges. I don't know what your son's symptoms are or how severe they are. We would like to talk with other people with TRAPS so that we can compare notes. I wish you and your son the very best in care and answers.
marylouise
Greetings, My son Alex is 17 and he was traps....
He has been struggeling w/this illness since he was2 years old.
Wow That seems funny saying that . He still has regular episodes and he has learned to deal w/them.
I thank God.... Know that you are not alone and technology has come a long way. I am a witness.
Hang in there and never give up hope...
Be Blessed Tracie
Hi There -
My daughter now almost 8 was diagnosed with TRAPS at age 3. She has been under Dr. K's care ever since. Before diagnosis, she used to have episodes lasting 2 weeks every 4 months. Then we started prednisone when she had an attack, which stopped the attacks right away. However, she started getting them every month. She has now been on Enbrel for 2 years. We do a weekly injection. I feel fortunate to say that she has not had a full attack in over 2 years!! I have learned that with all the genetic variations in TRAPS each patients symptoms and response to Tx is different. However, I encourage you to stick with it and be willing to try all possibilities. Good luck.
Hi again,
My daughter was enduring a 10 day episode of TRAPS with fevers that came and went several times each day, along with severe muscle pain, nausea, abdominal pain, and fatigue. She was started on prednisone 60 mg and slowly tapered down. She experienced dramatic improvement within 8 hours of taking her first dose of prednisone. When she got down to 30 mg the fevers returned. Her dose was raised to 40 mg and she was tapered down by 10 mg every five days. Two days ago she took her last dose. Last night her TRAPS symptoms returned. The doctor is considering methotrexate along with her Humira injections. Has anyone out there ever used methotrexate? Did it help? Did you experience unpleasent side effects? What a comfort to know that there are others out there who understand this struggle. God Bless all of you.
marylouise
Hello everyone. This is my first post. I am 25 years old and became sick 4 years ago but was not diagnosed until almost 2 years ago by the Mayo Clinic. We tried Enbrel but I did not respond. I am currently on a daily injection of kineret. It helps with the fevers but does very little for the pain and fatigue. I had to leave after my first year of medical school. I have submitted paperwork to be seen by Dr. K. but have not heard anything. Is there a better way to get in with him?
~Angela
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