Frustrated and new to the board

[meikog]

Hello everyone. I am a 33 yr. old female. I have had 5 flare ups of Iritis. The first flare up was after my mom died in '05, it was so scary, I remember thinking that I was going blind and might lose my sight forever.

I am HLA B27 positive and have AS. I have been on (and off when I could no longer afford it) Enbrel for the last year. I am currently taking the weekly injections (SO painful) and have an iritis flare up now. That is what I am frustrated with. I have an amazing Rheumatologist, so if you are in the LA area I can recommend her, highly. She has explained to me that the TNF inhibitors are not a cure, only a treatment. The weekly pain we put ourselves through doesn't seem to help. I still get stiff hands and horrible pain in my feet (plantar fasciitis). I had to move back to Southern California from San Francisco, because the damp weather caused so much pain in my feet and hands. While living there I had been misdiagnosed at first with a stress fracture and was in a walking cast for 6 weeks. And had the first opthamologist put me on generic pred drops that caused the flare up to get SO much worse. It was my 2nd opthamologist (Dr. Krista Ramonas) who finally diagnosed me with the plantar fascitis and got me on the right path to getting the answers to my questions and talked me down off the ledge of fear and the unknown.

I am also frustrated with this - I have yet to find an iritis dr., in Los Angeles, who actually cares about the patient and is compassionate about the pain and suffering we go through during a flare up. I do not want to bad mouth a doctor on this forum, so I will not get into specifics. But I have been treated so badly by a few doctors that just do not seem to care one bit about their patients. Doctors who have told me that it can not be caused by stress. Doctors who have yelled at me when they are checking the pressure in my flared eye if I blink at all. It is really sad, actually. So if anyone has any recommendations for a caring doctor in LA that specializes in iritis, please let me know. I would like to find one and get established for the next flare up, cause there is going to be another one some day.

Thanks for your help.

MG

[Mike Bartolatz]

Meikog, welcome to the group!
the cause of your uveitis is the HLA B27 gene along with the Reactive arthritis and ankylosing spondylitis that you seem to have. Enbrel IS NOT useful in the management of Uveitis. this has been known for over 5 years. other TNF inhibitors such as Remicade, Humira etc do work well in some individuals. usually best if used in conjunction with Methotrexate Cellcept etc. sometimes the NSAID Celebrex is used too with this combination or perhaps Dolbid (now only found as generic as Difusinal) or Naprosyn.
there are two fairly good uveitis specialists in the LA Area. Dr Levinson at UCLA and DR Narsing A Rao at Doheney eye Institute. their contact information can be found at http://www.uveitis.org in the PATIENT information section of the site on the USA Specialist list.

the next closest specialist would be Ira Wong in SF and then Albert Vitale in salt Lake City.