If you have had a full range of tests prior to diagnosis, you will have a record of how your eyes are functioning and what damage, if any has ocurred. You and your ophthalmologist will then be in a good position to judge the efficacy of any medication regime.
Currently, the right treatment has to be tailored to suit the individual concerned, and will depend on the results of any of the above tests.
There are two specific areas that your ophthalmologist will want to address: firstly trying to reduce the inflammation and secondly trying to control your autoimmune system so it stops attacking your eyes.
The current protocol is to treat with a combination of steroids (to reduce the inflammation) and immuno-suppressants (to stop your immune system attacking your eyes). These are strong drugs and do have side-effects, so it is important that there is proper monitoring and good access to your GP, ophthalmologist and rheumatologist. The reason you are likely to need to see a rheumatologist as well as an ophthalmologist is that the rheumatologist has expertise in using immunosuppressant medications.
The goal of the treatment is to find the lowest dosage of medication that will allow you to maintain your eyesight and stabilise your condition, or allow you to reach remission.
If you are put on steroids, you will also be given medication to counteract any damage to your bones that high doses of steroids may cause. These are usually alendronic acid and calcium with vitamin D tablets. If you are not given these automatically, you should ask your consultant about this.
You may also be given gastric medication to counteract any effects on your stomach.
If this first line of treatment proves unsuccessful and inflammation returns, there are other medications which can be used which may suit you better. Please see Treatments section for further information about this.
Unfortunately, at the moment there is no one definitive medication regime that works with everybody who has Birdshot.
If you are taking immunosuppressants and steroids, you will be (or should be) monitored for any unwanted side effects. Your rheumatologist or ophthalmologist will advise what they should be, but the monitoring will usually include blood tests, urine tests and DEXA scans. It is important to follow your specialist’s instructions and get these tests done when you are told to, as they are designed to safeguard your health and are important.
Blood tests and blood pressure monitoring
Blood tests check that your kidney and liver are functioning well, measure your cholesterol levels and the level of the immunosuppressant in your system to make sure you are not having too much or too little. These routine blood tests are done between every 6 – 12 weeks depending on your consultant’s advice and your test results. However, when you first start taking the medication, you may be tested as frequently as once a week or once a fortnight. The blood tests are sometimes done by your GP and sometimes done by a specialist unit where you receive your treatment, or perhaps by your local hospital’s renal unit. You also need to get your blood pressure checked regularly as these drugs can affect it.
You are also likely to have regular visual field tests and/or OCTs and/or ERGs (described above). You may also be sent for further Indocyanine Green or Fluorescein angiograms throughout the course of your treatment.
If you have been taking oral steroids for some months, your GP should arrange for you to receive a bone density (DEXA) scan periodically, to check that your bones have not thinned as a result of the steroids that you have been taking. The information below explains what this involves and describes how it is done. You may have to ask your doctor to arrange this for you. In our experience it does not necessarily happen automatically.
What is a Bone Density Scan (DEXA)?
A DEXA scan is used to measure the density of bones. It is mainly used to diagnose osteoporosis (loss of bone material) and to assess your risk of having a fracture.
It is an enhanced form of x-ray technology that is used to measure bone loss. DEXA scanning is today’s established standard for measuring bone mineral density (BMD).
DEXA is most often performed on the lower spine and hips. In children and some adults, the whole body is sometimes scanned. Peripheral devices that use x-ray or ultrasound are sometimes used to screen for low bone mass. You should wear loose, comfortable clothing, avoiding garments that have zippers, belts or buttons made of metal. Objects such as keys or wallets that would be in the area being scanned should be removed.
This factsheet has been written by Rea Mattocks and Annie Folkard and has been checked for accuracy and correct clinical information by Mr Nigel Hall, Consultant Ophthalmologist at the Winchester and Eastleigh Healthcare Trust, October 2009.
We have provided basic information in this section. If you wish to explore further, here are some useful links:
The international support group for people with Birdshot: http://birdshot.info
An article on Birdshot by one of the leading ophthalmologists, Dr C Michael Sampson, from New York http://emedicine.medscape.com/article/1223257-overview
Published by the Uveitis Information Group (UIG) August 2009
Next page: Q & A on immunosupression life style