This list is simply intended as a guide to the kinds of questions you might like to ask you doctor. It is by no means definitive and some of the questions may not be appropriate to your particular case. Your doctor may not know all the answers to these questions, but the questions help you start a dialogue with your doctor. The questions have been prepared by Rea Mattocks who is a birdshot patient who, together with Annie Folkard, founded the Birdshot Uveitis Society. If anyone thinks we have missed off important questions that might need to be asked, feel free to contact us at firstname.lastname@example.org
1. What is Birdshot? How did I get Birdshot?
2. How far advanced is my Birdshot?
3. What is the prognosis? How long am I likely to have Birdshot for?
4. How much sight have I lost and will this be permanent or will treatment help me recover some of my eyesight?
5. Can you tell me what typically happens to some-one with Birdshot?
5. What is the most current treatment for Birdshot?
7. Why are you choosing this particular medication regime (e.g. steroids and immunosuppressants) and what are the side effects of this particular medication? How long will I be on this medication? How often will you review my medication regime?
8. What are the side effects of each type of medication you are prescribing for me? What are the short term effects and the long term implications?
9. Are you putting me on any medication to counter the side effects of steroids/immunosuppressants such as:- alendronic acid, calcichew and stomach medication?
10. What happens if this medication regime is not effective at controlling my Birdshot? How will you and I know whether it is controlling my Birdshot?
11. How often should I have blood tests and what are they for? Who should carry out the blood tests? Who will get the blood test results and interpret them? How will I be told about the results of the blood tests?
12. How often should I have monitoring and diagnostic tests such as ERGs, Cyanine, Indocine, Fields, DEXA and who will organise these?
13. How often will I need to see the ophthalmologist/rheumatologist/GP?
14. What is remission, and when will I know I am in remission? Will I still need to be on medication when I am in remission?
15. What is the goal of treatment? (e.g. to cure or to stabilise or to get into remission)
14. Will I have to be on medication for the rest of my life?
15. What can I do to reduce the cost of my prescriptions for the drugs that I need to take?
WHAT TO DO IF YOU NEED MULTIPLE REPEAT PRESCRIPTIONS
This link will take you to information about a pre-payment precription card which is useful (and much cheaper) to have if you require multiple prescriptions. In our experience, if you need treatment, you are likely to need a number of prescriptions throughout the year, and the prescription card will probably save you money.
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