Hi, I was diagnosed with birdshot almost two years ago, I began my treatment with an injection of corticosteroids , which had only a temporary effect ( only 2 weeks), then I started treatment with Linfonex ( mycophenolate mofetil) with prednisone. After 2 months the dose was not enough so I went twice Linfonex and use of immunosuppressants ( tacrolimus ) was added. So far I've been able to keep the disease only with some ups and downs. The reality is that the cost of these drugs in my country (Chile ) is excessive, now almost 650 USD spending day so that I can no longer maintain treatment for long. I wonder what the experience of you . and costs that are keeping today with these drugs or other more accessible. Greetings and thanks for your comments .

This is the drug combination that has worked for me as well. I know that they are expensive, but now that both drugs are available as generic versions, the costs should not be so high. You might want to join the closed Birdshot facebook group - because it is a more active forum than this rare share forum. Best wishes Annie

thanks for the information, I never use facebook but I will make the exception.

Hi, Annie, I've been trying to find the Birdshot Forum for months on Facebook. How do I get to it? Thanks, Wendy

Hi Wendy--This is not Anne. I'm TJ. Another "birdgirl" Love your name :) I'm not crazy about Facebook either, and had to have help finding the birdshot group there recently. Near the top right of the FaceBook home page there is a box for "groups" and that is the entrance. Once I got into groups and typed in birdshot I found it easily. It is a very active group! I have difficulty reading all the posts. Please post here again and I will try to help, although probably not the best person to ask. Best! TJ.

Hi CHVALENZU -- My medical costs have not been an issue because of fortunate medical insurance. No idea about other countries. That said, I have refused my eye specialist's recommendations for prednisone and methotrexate - concerns over side effects. Between 8/2015 and 12/2015 my only treatment was acupuncture twice monthly and Chinese herbs. ERGs were stable during this time. January, 2016, I started 2mg (bedtime) Low Dose Naltrexone (LDN). Symptoms are now less than half. I recently increased the dose to 3mg. It''s an inexpensive old drug (generic and off label) with almost no side effects at low dose. No research for Birdshot but often used for MS, RA, etc. Check out www.LDN2016.com for the LDN conference--12.5 hours of high level professional education for Cancers, autoimmune disorders, etc. TJ.