Gone back on the steroids.... seems I am flaring and the cellcept has not been doing the trick. Hope it is not for too long. Annie

Hi Annie, Thank-you so much for the e-mail update with news of all that you and Rea are doing to set up a UK birdshot community. And of course with the link to this site - as you can see I have joined! So sorry to read your thread about your flare - not the best gift for Christmas at all. Hope the steroids do their work quickly. What is the plan now - will something else be added to the mix? As for me I am doing really quite well - continue in remission - almost 3 months now- still on Imuran. Wishing you a Merry Christmas and joy and health in the New Year. Dee

Thanks Dee - good to see you and Patty have joined rareshare. I am fine, (well as fine as anyone can be on 40 mg prednisolone and Christmas on the horizon.) Perhaps it is a good mix? I go back beginning of Feb, so I will know then, what next. I am still on cellcept. I don't feel too bad - just bossy and in a clearing out type mood. Feel sorry for the family? Glad to hear you are doing well. All the best. Annie

Hi Annie, Got here, at last! I hope the holiday has done you the power of good. Just the thought of steroid has me shuddering.... Maxine

what is the uk website for this condition

Hi Rosina Rea and I started developing a UK website for birdshot but we put it on hold as we joined forces with Uveitis Information Group (located in Shetland), but providing patient information for all of the UK. It already existed, but was run singlehandedly and needed help. UIG is well established (been around for eight or so years and has good links with the medical profession and we thought there were advantages in supporting something that existed than starting something new. I am now in the process of revamping their website which is very basic and needs a facelift. You can contact us at birdshot @ live . co uk and we will be pleased to provide you with the fact sheet that we have written about this rare condition and help you anyway we can to make sure you getting the treatment you need. All the best Annie

thanks i found out about birdshot last year as was prescriped presidisolone and now my doctor wants to take me off it as it is not doing my sugar levels any good. i was also told that hearing does not affect this condition at all and now my eye sight is getting worse. and there is nothing i can do except i keep walking into things all the time. at the moment i hate birdshot but what can i do i am 22 and i was told i am not allowed to drive.

Send us an email and we can talk about this off line. I assume that you are in the UK. If you do get in touch please give us a bit more info about your diagnosis, how long you have had birdshot, whether you are being treated by a uveitis specialist, which bit of the uK you are in and we can see if we can help. If your eyesght has been affected that badly and you can't take prednisolone there are other drugs that can be used to treat birdshot. I'd like to be able to send you our fact sheet so that you can get more information about the condition and to see if we can help you at all. It is is urgent that you do get the right treatment quickly if your eyes are still inflamed. You mention hearing - have you got a problem with that as well? All the best Annie