Retinitis pigmentosa

For a nice explanation of Retinitis Pigmentosa, please click here, courtesy of Foundation Fighting Blindness.

Patients always ask if anything can be done to slow down the progression of retinitis pigmentosa. Taking high dose vitamin A and eating fish or taking a special omega three fatty acid called DHA may help slow the progression. However, this treatment needs monitoring with an internist and has potential side effects. Women wishing to become pregnant should probably avoid these supplements. Patients with a significant smoking history should not take vitamin A as it may increase the risk of lung cancer.

Regards the actual dosages, most adults with typical retinitis pigmentosa should take vitamin A palmitate 15,000 IU/day and avoid high doses of vitamin E supplements. If a patient wants to take a daily multivitamin in addition, this multivitamin should not contain more than 5000 IU of vitamin A or 30 IU of vitamin E.

They should eat one to two 3-ounce servings of oily fish/week (salmon, tuna, herring, mackerel, or sardines.) If a patient cannot eat oily fish, then we advise one Life’s Abundance DHA 200 mg capsule per day or one fish oil capsule per day that contains at least 200 mg of DHA. For those non-smokers who retain mid-peripheral field the data also support the use of lutein 12 mg/day among those on vitamin A. The estimated long-term benefit of vitamin A, DHA as a major constituent of oily fish diet, and lutein could be up to 20 additional years of vision for those who start this regimen by age 40. Patients who would usually become virtually blind by age 60 without treatment would be expected to retain some useful vision until age 80 with treatment.

Some sources of these pills include:

Vitamin A 15,000 IU for Adults with RP
Freeda Vitamins, Inc. J.R. Carlson Laboratories, Inc.
47-25 34th Street, 3 rd Floor 15 College Drive
Long Island City, NY 11101 Arlington Heights, IL 60004–1985
1–800–777–3737 (outside NY) or 1–888–234–5656 (outside Chicago) or
1–718-433-4337; FAX 1718-433-4373 1–847–255–1600

100 Tablets $6.36/bottle (with discount) Products #1101 and 1102A–Palmitate–15

250 Tablets 12.72/bottle (with discount) 120 Gel-caps $8.90/bottle
Shipping & Handling $5.95 240 Gel-caps 15.50/bottle
Will ship outside USA for extra postage Shipping & Handling 10.00
Will ship outside USA for extra postage

Sources of Vitamin A for Children with RP
Freeda has 10,000 IU for 10-15 year-olds. These tablets are scored and can be easily halved for a 5,000 IU dose for children 6-10 years old.
100 Tablets $4.92/bottle
200 Tablets $9.84/bottle

Known Sources of Neuromins® /Life’s DHA 200mg
Swanson Health Products The Vitamin Shoppe

www.swansonvitamins.com 1-800-223-1216
(formerly Neuromins®) www.vitaminshoppe.com
30 softgels (SWU504) 200mg (search Neuromins® on the homepage)
12.49/bottle 60 softgels (SR-5558) 200mg $35.99/bottle

Plus shipping & handling 120 softgels (SR-5559) 200mg $68.99/bottle

Source of Lutein 6 mg (2/day for non-smoking adults)
CVS Natural Lutein 6 mg #247313
Your local CVS Pharmacy or online at www.cov.com 50 softgels $5.99

 

Patients often ask if clinical trials are available for retinitis pigmentosa. Currently, one of the most promising therapies for retinitis pigmentosa is the CNTF implant. This implant is a tiny pellet that is sewn into the eye and releases a special medicine. A small ten person clinical trial was performed which showed some potential benefit. Currently, the company that makes this implant, Neurotech, is conducting additional clinical trials. I encourage you to track these clinical trials at Neurotech’s special clinical trials website.

More information:

Scientific article on Retinitis Pigmentosa prognosis