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|New Treatment Regimen for Patients with RP|
|Written by Wiggy|
|07 December 2009|
September 23, 2004 (Page 1 of 3); Revised March 20, 2007
HARVARD MEDICAL SCHOOL , MASSACHUSETTS EYE & EAR INFIRMARY
In June 1993, we reported in the Archives of Ophthalnology that vitamin A palmitate15,000
In September 2004, the Archives of Ophthalmology has just published two reports that summarize
the results of 8 years of work to evaluate the effects of docosahexaenoic acid (DHA) for adults with typical RP also receiving vitamin A palmitate15,000 Iu/day. The results are complex.
The first new report on all participants taken together showed that DHA supplementation by
capsules (600 mg twice each day) did not, on average, slow the course of RP over a four-year
interval. Therefore, we cannot make any general recommendation for DHA supplementation by
capsules for patients already taking vitamin A palmitate.
The second new report describes the results in subgroups of the participants. Here l've observed
that DHA supplementation did provide a benefit. However, the benefit was limited to the subgroup
of patients starting vitamin A palmitate for the first time. ln a comparison among randomized
patients in this subgroup, DHA supplementation by capsules slowed the course of RP for two years.
In addition, a dietary benefit of omega-3 rich food became evident as stated in the second
report. We observed that patients taking vitamin A palmitate (but not on DHA capsules) with a
higher omega-3 rich diet iniake (i.e.,equivalent to eating 1 to 2 three-ounce servings per week of
omega-3 rich fish, such as salmon, tuna, mackerel, herring, or sardines,which contain among other
constituents considerable DHA) had, on average, a 4O to 5O% slower annual rate of loss of visual
field than patients with a lower omega-3 rich diet intake.
Re: New treatment regimen for RP Page2 of 3, 9/23/04
The results in the second report lead us to offer the following general recommendations.
(1) For adults with typical RP already on or who have ever taken vitamin A palmitate
15,000 Iu/day in the past, we advise that they continue vitamin A palmitate and eat 1-2 three-ounce
servings per week of omega- 3 rich fish. Including this amount of fish in the diet is consistent with
current American Heart Association recommendations.
About three months after starting omega-3 rich fish, we advise a measurement of fasting red blood cell
(RBC) DHA through their physician to confirm that the RBC DHA level is at least 4% of total RBC fatty acids,
as we reported that such patients have, on average, a slower rate of decline of visual field than patients with lower levels. If the RBC DHA level is not at least 4%, we advise patients to consult with their physcian on how best to reach this level through food. lf the level is 4% -7% (no higher or lower), this test could be
repeated annually thereafter.
(2) For adults with typical RP who plan to start vitamin A palmitate 15,000 lu/day for the
first time, the results support the following. If fasting serum vitamimin A and liver function profile are
normal, we advise that they take this dose of vitamin A palmitate and also supplement with DHA
capsules 600 mg twice each day (i.e., three 200 mg capsules in both the AM and PM with meals) for
two years. After two years patients should discontinue DHA supplementation by capsules because
no evidence was fould for continued benefit and because a slight tendency toward adversity on
ocular function was observed over the longer term among patients concurrently on vitamin A
palmitate. After stopping DHA capsules after two years, patients should continue vitamin A
palmitate15,000 iu/day and also eat l-2 three-ounce servings of omega-3 rich fish each week. Then,
about three months after starting omega,3 rich fish, we advise measurement of fasting RBC DHA as
described above. It should be noted that combining an omega-3 rich fish diet wirh DHA capsules did
not provide any additional benefit.
The Study results reported in the second paper show that the potential benefit of combining
vitamin A palmitate with dietary intake of l-2 servings of omega-3 rich fish per week is
substantial: the rate of decline of loss of visual field sensitivity was reduced by 40 -50% per
year. Therefore, combining vitamin A palmitate with this diet regimen could achieve a gain of
almost two decades of visual preservation. For example, we have estimated that an average patient
age 37 with typical RP already on vitamin A palmitare15,000 Iu/day who maintains an omega-3
fatty acid food intake of at least 0.2 grams per day (i-e.,equivalent to eating l-2 three ounce servings
of omega-3 rich fish per week) would be expected to lose virtually all central visual field sensitivity
by age 78, whereas an average patient who eats less than 0.2 grams per day would be expected to lose
all central visual field sensirivity by age 59.
Re: New treatment regimen for RP 9/23/04 P. 3 of 3
It should be noted that beta-carotene is not vitrmin A. lt is the precursor of vitamin A,
but it is not predictably converted into vitamin A. Therefore beta carotene is not a
suitable substitute for vitamin A palmitate in the context of this treatment regimen.
Although no toxic side effects have been observed among adults with RP in good general
health on vitamin A palmitate15,000 lU per day (Sibulesky et al., Safety of Less Than
25,000 IU Vitamin A Daily in Adults with Retinitis Pigmcntosa, Am J Clin Nutr 69:656-663
1999), we continue to advise that patients obtain a fasting serum vitamin A and liver function
profile annually and continue vitamin A palmitate only if these tests are normal. We have
observed no toxic side effects among adults with RP in good general health on DHA
supplementation by capsules.
The results apply to most adult patients with typical RP including those with partial
hearing loss. The results do not apply to patients with RP and profound congenital deafness,
RP as part of the Bardet-Biedl syndrome,or atypical or rare forms of RP as such parients
were not included in this study. Women with RP who are pregnant or planning to be
pregnant should not take the combination of vitamin A palmitate and DHA by capsules
because high vitamin A intake has been associated with an increased risk of birth defects.
We did not study patients under age l8 or patients with best-corrected visual acuity of less
than 20/100 in both eyes; therefore, we cannot make any formal recommendation for such
Our conclusions are based on group averages and, therefore, we cannot provide
assurance that this regimen will benelit a specific patient or that it is appropriate for
any particuliar patient.
Sources of vitamin A palmitate15,000 lU as well as DHA in 200 mg gelcaps and the
procedure for obtaining a RBC DHA level are attached. Please share this informatior with
your ophthalmologist and family physician to determine if this regimen is appropriate
for you. This treatment regimen should be done only under medical supervision. you
are referred to the Archives of Ophthalmology Volume 122, pages l297-1305 and pages
1306-1314, 2004 if you or your doctor wish to review the details of our research. If you still
have questions, please write to us at the above letterhead address.
EliotL. Berson, M.D.
September23, 2004 Attachment I of 3
Known Sources of Vitamin A Palmitate
Consult with your doctor concerning dose the appropriate
before ordering these supplements.
Sources of 10,000 lU (for children with RP age 10-15 years old)
FREEDA VITAMINS, INC. BRONSON
47-25 34rh Street,3rd Floor 350 South 400 West #102
Long lsland City, NY 11101 Lindon, UT 84042
1-800-777-3737 (outside NY) or 1-800-235-.3200
100 Tablets $6.95/bottle 250 Soft-gels $6.98/bottle
250Tablets 10.90/bottle Order ltem No. 24
Shipping& Handling 5.25 Shipping & Handling 4.90
Tablets are scored and can be easily
halved for a 5,000 lU dosage for children
6-10 years old
Sources ol 15,000 lU (for adults with RP)
FREEDA VITAMINS, INC. J.R. CARLSON LABOFATORIES, INC
47-25 34th Street, 3rd Floor 15 College Drive
Long lsland City, NY 11101 Arlington Heights, lL 60004-1985 1-800-777-3737 (outside NY) or 1-888-234-5656 (outsideChicago) or
1-718-433-4337; FAX 1-718-433-4373 1-847-255-1600
Products #1101 and1102A-Palmitate-15
100 Tablets $6.95/bottle 120 Gel-caps $6.90/bottle
250 Tablets 13.90/bottle 240 Gel-caps 12.90/bottle
Shipping & Handling 5.25 Shipping & Handling $5.00
Will ship outside USA for extra postage Will ship outside USA for extra postago
Disclalmer: The products described above have not been tested or evaluated to determine their safety or effectiveness in children or adolescents wilh RP. The listing of these suppliers and their products should not be misinterpreted as a recommedation or indication of propietary interest any of these companies.
September 23, 2004 Attachment 2 of 3
Known Sources of Neuromins DHA 200mg
DHA in a dose of 600 mg twice a day has been recommended for most adult patients with
typical retinitis pignentosa who are starting vitamin A palmitate15,000 lU/day for the first
time (see Berson et al; Archives of Ophthalmology 122: 1306-1314,2004).
Patients with retinitis pigmentosa should consult with their doctor concerning whether DHA is
appropriate for them before ordering this supplement.
Neuromins(R) DHA 200 was the form of DHA used in this study. Neuromins(R) DHA 200 is
available in many health food stores across the country. Brands of Neuromins(R) DHA 200
include Nature's Way, Source Naturals,Solaray, Natrol, and Solgar. The above brands are
sold directly to retail stores and clearing houses (two listed below) rather than to individual
consumers. However, both Nature's Way (l-800-962-8873 or www.naturesway.com)
and Natrol ( l-800-262-8765 or www.natrol.com) will help you locate a local supplier. The dose
recommended is 600 mg twice each day (3 in the AM and 3 in the PM with meals) only for
2 years. Therefore, patients ordering Neuromins(R) DHA will be taking six softgels per
day. For example,a one-month supply would be 180 softgels and patients should plan
accordingly. The following are sources of Neuromins(R) DHA 200 readily acccssible by
toll-free phone or via their websites.
SWANSON HEALTH PROOUCIS THE VITAMIN SHOPPE
P.O. Box 6003 CustomerCare Department
Fargo,ND 58108-6003 2101 91st Street
1-800-437-4148 North Bergen, NJ 07047
(searchNeuromins(R) on the homepage) (searchNeuromins(R) on the homepage)
30 softgels(SWU092) 200mg www.vitaminshoppe.com
Shipping& Handling 4.95 60 softgels (SR-5558) 200mg
Ship abroad for additional fee. $30.80/bottle
120 softgels (SR-5559)200mg
$59.98/bottle Shipping and Handling $4.99
Ship abroad with restrictions for added fee
Precautions: Please be reminded that DHA supplcmentation in a dose of 600 mg twice a
day for adults with typical retinitis pigmentosa (RP) on vitamin A palmitate was reported to
be effective for only two years and only in patients starting vitamin A for the first time. The
products described above in this dose have not been tested or evaluated to determine their
safety or effectiveness in children or adolescents with RP.
Stopping instructions: This dose of DHA should not be continued beyond two years
because no evidence was found of a continued benefit and also because a slight tendency
toward adversity on ocular function was observed over the longer term among patients on
vitamin A palmitate 15,000 IU/day (see Archives of Ophthalmology, Volume 122, pages
1306-1314,1004). This supplement in combination with vitamin A palmitare should not be
taken by women who are pregnant or planning to become pregnant because of an increased
risk of birth defects among women on high dose vitamin A intake.
Disclaimer: The listing of these suppliers and their products should not be misinterpreted as
a recommendation or indication of proprietary interest in any of these companies.
September 23, 2004 Attachment 3 of 3
Revised September17, 2008
PROCEDURE FOR MEDICAL DOCTOR TO OBTAIN A RED BLOOD CELL
DOCOSAHEXAENOIC ACID (DHA) LEVEL KIT
1. Patients should fast ovemight. If not feasible, fast at least 4 hors prior to the blood draw.
2. Use a 5 ml EDTA - Lavender top vacutainer tub (Becton Dickenson Catalog # DB 366452 or
#DB367863). Collect about 3 ml of blood in an EDTA tube.The tube should be labeled with the
PATIENT'S NAME and the DATE THE BLOOD WAS DRAWN.
3. The patient's blood should be packaged in a Specimen Collection Kit provided by the
laboratory below only on request from your physician. Your physician should fill in the required
information on a Test Requisition Form, available at the website of the laboratory listed below,
and request a RBC DHA level which is part of a RBC total lipid fatty acid profile. The goal is to
have a fasting RBC DHA level of 4 - 7% of total RBC fatty acids.
4. Send the lavender EDTA tube of whole blood at room temperature by same day courier on
the day collected (Mondays through Thusdays only) in a Specimen Collection Kit following kit
instructions for packaging and shipping along with the Test Requisition Form to the labontory
listed below to arrive within 24 hous after the specimen was drawn via DHL or Federal Express:
Peroxisomal Diseases Labontory
Kennedy Krieger Institute
707 North Broadway, Room 530
Baltimore, MD 21205
Tel # 443-923 -2188
Fax # 443-923-2755
$185.00 with specimen (pre-pay)
A report will be sent within about 1 month. Adults with typical retinitis pigmentosa on vitamin A
palmitate15,000 Iu/day and an omega-3 rich diet should strive to have a RBC DHA level of 4%
or greater of total RBC fatty acids. If the level is 4% or greater, the level could be rechecked
annually. Patients who have not achieved this level should consult with their physician on ways
to incrcase their RBC DHA level through food intake and then recheck their level about 3
months after changing their food intake (See Archives of Ophthalmology 122:1306-1314,2004).
Disclaimer:The listing of these suppliers and their tests should not be misinterpreted
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