Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more


Bakersdoor Message
8 Jun 2009, 08:20 PM

Hi I see you are in the UK (so am I). This is an excellent site for information about the condition, but you also might like to visit the following : This is a discussion site where there is a bit more activity and you are more likely to get some useful feedback. It was originally an MSN website set up by a Dagmar - also a member here. We had to move because MSN shut down the facility and we tried Multiply - no good and Lefora which seems to be better. A number of people have tried Rareshare but have had issues about not being able to see it properly, and have had problems joining as well. Another person (Rea) who also has birdshot,also based in the UK, and I wanted to set up some sort of support group here. We wrote to specialists , and have decided to link up with Phil Hibbert at UIG a general uveitis information group which is already well established. We believe that Birdshot might not be as rare as everyone tells us. Our initial survey was quite interesting in this respect, and we would like to build up a data base with info about people who have this condition so we can prove our point and get proper treatment for everyone who needs it. If you feel you want to get in touch with us by email we will be happy to answer any questions we can in that way. Our address is at "birdshot at,uk" Methotrexate is a commonly used immunosuppressant used in combination with prednisolone, but I have no direct experience with it. It is often used for children who have uveitis problems with JRA. It also has been around a fair time. Presumably this means it is well tested and not too toxic. The way it was explained to me is that the prednisolone gets the inflammation under control and the immuno suppressant teaches the immune system to respond differently - ie not to attack the eyes. With luck - after everything is under control and you have been on immunosupressants for around 2 years - all drugs can be withdrawn. People sometimes have to try different drugs because they are not able to tolerate them. What works for one person will not necessarily work for the next! Hope to hear from you. All the best Annie
dagmara56 Message
9 Jun 2009, 01:15 PM

Hello! I uunderstand that you are feeling sorry for yourself. This is typical. When someone is diagnosed with birdshot, they usually go thru the same stages as death: denial, anger, bargaining, depression, and acceptance. This is not a straight line but cycling back and forth thru the various stages until you get to acceptance. You will get there, it will just take time. Stop putting your life on hold and live it. You will have birdshot for the rest of your life, but it does not mean it will be active for the rest of your life. Your life is meant to live, birdshot is just another event that will give you something to talk about while you socialize! The key component to birdshot treatment is this: you must educate yourself. Knowledge truly is power in this instance. We have an excellent group that has more members, and is easier to read at also, you can email me at my personal account @ ask any question you wish. I've had this disease since 1991. Its very very bad. And yet, I traipse off to work every day as a software engineer, and I have a very normal life. Its going to be okay, you just have to learn to be flexible and adapt. Dagmar Anne