Eye Biopsy, Anyone?!?

[mamalioness]

My daughter, 6, presented with posterior uvietis and chorioretinitis. It was discovered during a routine eye exam. She, throughout the years has also had bouts of diarrhea/constipation, reoccurring numerous mouth sores, reoccurring but less in number vaginal sores, moderate skin rashes as well as intermittent and nagging joint pains. All of which i brought up to her docs but even I didn't connect at the time. She went through all the blood tests and the doctors HAD diagnosed her with Behcet's. The steroids that she was on (prednisone 5mg/kg, 5ml/day) relieved her of symptoms. At a month of being off she had another flare which included all the symptoms above as well as her eye. Her rheumy ordered a blood test to check for inflammation levels throughout her body. It came back normal. The Uvietis Clinic (opthal. + rheumy) decided to remove the Behcet's diagnosis due to that result as well as her not having the genetic markers. That confused me b/c from what I've read, they are not conclusive enough to rule in or out a diagnosis. Anyhow, they keep talking about methotrexate but the hesitation is they don't have a conclusive dx to what is causing all of these symptoms. This time around, the steroids have helped relieve all the symptoms except the eye inflammation. Her mouth sores while on the meds, haven't lasted more than 24hrs. So getting them swabbed has proved a pain. NOW, they are suggesting an eye biopsy to help them narrow down possible dx. I have been given some time to think about it. Has anyone here or your loved ones had a biopsy performed for their eye lesions? Obviously I'm nervous about risks and am trying to weigh the pros vs. the cons. What are your thoughts? ? Please, feedback is much appreciated!! Thank you in advance.

[magician]

Hello, Mamalioness,

I am so sorry to hear about your child - suffering so much at such a young age!

Based on symptoms of mouth ulcers (I have not had genital ulcers), uveitis and joint pains, my condition was diagnosed as "probable Behcet" and have been receiving treatment accordingly. I was negative for genetic marker.

The doctors did not do an eye biopsy. They instead tested me for all the other suspected diseases and, having tested negative, concluded with a diagnosis of "probable Behcet".

For my eye problem, I go to an eye center with many opthalmogists in it, and even if I have one particular specialist attending to me, this one specialist does consult with the other eye doctors in the center. They never brought up the need for an eye biopsy.

To arrest the uveitis, I was given steroids as first or shock treatment. After some months of stability in my eye condition, I was switched to Imurek. After around 4 years, I had an eye relapse and I was switched back to steroids. After 2 months on steroids, I was then put on Humira - one injection every 2 weeks. My eye situation stabilised with Humira, except for one short period when work stress got the upper hand. I have been on Humira for almost 2 years. I take colchicine, 1 mg daily, for the mouth ulcers.

Note that all my medications, except for the shock steroids pending diagnosis (during which time I had uveitis) are being prescribed by my immunologist. The eye specialist confers with the immunologist, but he defers to the immunologist for prescribing the medication. I had a rheumy in the initial stages, when all my joints were in pain. But I stopped going to the rheumy when my joint pains disappeared some 2-3 years ago.

I do take my meds religiously, but I think the healthy eating part and the yoga/taichi/qigong also contributes significantly to my feeling of wellness.

Have hope, and I wish you and your child the best !

Pardon my question - do you also have Behcet?

[Michja]

Hi, I also have a 11 year old with BD. This is a difficult time as you don't want to be diagnosed with the wrong disease and you need to know what is causing your child all this pain. We were on the roller coaster for 5 years before diagnosis. Shocking time.

My daughter did have uveitis and pressure up to 38 in her left eye along with all of the BD criteria. We were driving nearly one half hours three times a week for two months to prevent blindness. At no stage did the specialists do an eye biopsy. Although we did have a firm diagnosis of BD. My daughter was started on IV Infliximab which worked after 3 months and her eyes calmed down completely.

My daughter was taking 25 mls steroids and although needed I felt this even caused a bit of her eye pressure.