What Is the Treatment for Retinitis Pigmentosa?
Currently, there is no specific treatment for retinitis pigmentosa (RP). In the past, there were reports that a supplement of 15,000 I.U. of Vitamin A and fish oil supplements might be of some benefit.
However, the research group at the Mass Eye and Ear Institute, where the Vitamin A study was initially published, recently reported that Vitamin A does not make a difference in slowing down RP. The original patient data was reanalyzed using some new information published about electroretinography, and there was no difference in disease progression with or without Vitamin A.
There is some evidence to support the use of DHA and lutein, which may have a modest effect on slowing disease progression in RP.
Other lifestyle modifications that may help slow RP include protecting your eyes from ultraviolet light with sunglasses and hats when outside, refraining from smoking cigarettes, and getting cardiovascular exercise.
Low Vision Options
Low vision aids and occupational therapy can help you maximize the use of the vision you have. You should consider having comprehensive low-vision examination – performed by an ophthalmologist or optometrist specializing in low vision. They can evaluate you with various low vision aids and make recommendations. They often have low vision therapists in-house who can help you with strategies to adapt to constricted visual fields and blind spots.
For example, there are visual field-expanding glasses that use prisms. These have been developed for people with reduced peripheral vision. These special prism glasses can help you become more aware of your missing visual fields, making navigation and reading easier. They do not restore “normal” vision, but they have proven helpful for many everyday activities and specific mobility and travel functions. You may require specialized training from a certified low-vision therapist to use these glasses safely and productively.
Reverse telescopes can also be helpful if your field of vision is less than 10 degrees. These telescopes reduce the image to fit within your field of vision and require a visual acuity of 20/80 or better. You will need training in orientation and mobility to properly use these devices.
Cataracts and Cataract Surgery
Individuals with RP may also develop cataracts. Cataracts may be removed, as in other persons with cataracts, usually using an intraocular lens.
Macular Edema
Fluid in the center of your retina, or macular edema, is a common complication of RP that may reduce your central vision and can be treated by your ophthalmologist with eye drops or pills, or less commonly with injections.
Mental Health
Loss of vision is associated with anxiety and depression, and the mental health burden of RP should not be ignored. If you are experiencing anxiety or depression, it is important to reach out to your primary care doctor or ophthalmologist for a referral to a mental health professional. Mental well-being contributes to both your overall health as well as your ability to optimize your use of the vision you have.
Is There a Cure for Retinitis Pigmentosa?
Although there is not yet a cure, there is much retinitis pigmentosa research being carried out by universities and others in the United States and worldwide. Several clinical trials for RP are enrolling patients with particular genetic causes of RP or particular clinical features. To find out more about current clinical trials, ask your retina specialist or visit https://www.fightingblindness.org/clinical-trial-pipeline.
- Ask your eye doctor about low vision services and other vision rehabilitation services that can help you with everyday living.
- You can also read APH ConnectCenter personal story blogs about people coping successfully and living well with various eye diseases and disorders, including retinitis pigmentosa.
Portions of this article were published originally at http://www.medicinenet.com/retinitis_pigmentosa/article.htm.
By Frank J. Weinstock, MD
Edited and Updated in 2024 by Abigal Fahim, MD