We really welcome receiving your stories as they can be very helpful especially for newly diagnosed Birdshotters to read. There is nothing like hearing first-hand about stories of treating Birdshot Uveitis successfully to give you hope and help make you realise that there can be life after a Birdshot diagnosis.
Recently I was in touch with Donna, (I met her at the Boston 2013 Birdshot conference) as I wanted her to share her experiences of cyclosporin followed by Remicade®, with a birdshotter from Puerto Rico who had recently written in to BUS and was wanting to communicate with other birdshotters before making her decision about her next treatment option.
We asked Donna if we could share her experience on the BUS website. The answer was yes, so this is her story.
“After my diagnosis four years ago here in Edmonton, Alberta, Canada, I was put on prednisone initially to get a jump on the inflammation. I learned of Dr. Foster in Boston, who apparently sees the most Birdshot patients, and my family insisted I go to see him. As per Dr. Foster’s protocol, I went on his cocktail of mycophenolate moefetil (CellCept®) and cyclosporine and weaned off the prednisone after 3 months. I was on this protocol for 15 months. My Birdshot stopped progressing but none of the symptoms reversed and I continued monthly injections in both eyes to control ongoing macular edema. I had many not-so-nice side effects from the cyclosporine that I was willing to put up with, thinking it was helping, but eventually it attacked my kidneys and I had to stop. I then found out that the amount and severity of the side effects probably meant the drug wasn’t really working for me all that time. Having said that, I met MANY patients at the recent International Birdshot Symposium in Boston who have had success with cyclosporine with NO side effects.
Dr. Foster then recommended I continue with the CellCept® and add Remicade®. While I waited for my insurance to approve the Remicade® my vision plummeted. Seven days after starting Remicade® I experienced a dramatic improvement in my vision! After 14 days I was driving again! My symptoms began reversing, the macular edema stopped (yeah, no more eye injections after two years!) and my vision continued to improve. I do have some permanent damage (from before the Remicade®) that doesn’t really bother me any more now that I am used to it and I am seeing better than I have in four years. And the only side effect I have experienced on Remicade® are some sinus issues that are easily controlled. Remicade® has been a miracle drug for me! Dr. Foster says the current thinking is a minimum of two and preferably three years symptom-free before weaning off all meds.
I don’t know what your health insurance is but it might be a major factor in your decision. cyclosporine and CellCept® are covered by my health care plan. While Remicade® is approved for use in many autoimmune conditions here in Canada, Health Canada has not yet approved it for use in eyes because there have not been studies done with adequate numbers here! It was a hassle getting approval from my husband’s company plan but they finally did approve it. The plan covers 90% of the cost but it is still extremely expensive. I would be inclined to say try the CellCept® and cyclosporine first because so many patients seem to have success with that. The Remicade® is a great back-up.”
Remicade® is given via an infusion in a hospital. It is rarely available in the UK unless other treatments have failed or are not tolerated. A special funding application has to be made. There is also the inconvenience of having to go every 4 or 6 weeks to have the infusion and this generally takes a couple of hours to do.
For further information about a recent research study on infliximab please see: http://www.ncbi.nlm.nih.gov/pubmed/23177362
If you would like to tell others your Birdshot story, please do write it down so we can publish it for our members to read.