macular degeneration, macular, diagnosis zinc – My Macular Degeneration Journey/Journal

Should I take eye vitamins? What’s AREDS2?

QUESTION: Should I take eye vitamins? What’s AREDS2?

(Updated October 2022)

This only applies to those with Age-related macular degeneration (AMD or ARMD) not any other form of macular degeneration (MD).

This is NOT medical advice. It is information for you to use:
– to do your own research
– to ask questions of your eye specialist
– to ask questions of your medical doctor.

The Basics

1. What is AREDS and AREDS2?

They are NOT brand names.

AREDS stands for Age-Related Eye Disease Study. There were 2 studies: AREDS results released in 2001; AREDS2 results released in 2013.

2. What was the purpose of the studies?

The purpose of these studies was to see if a specific combination of vitamins and minerals would slow the progression of AMD to the advanced forms of wet or advanced dry/geographic atrophy. They were both conducted by the US National Insititute of Health (NIH) National Eye Institute (NEI). The Bausch & Lomb company provided the formulations & financially supported both studies. Click here to read the information provided by the NIH NEI about AREDS and AREDS2.

3. What were the formulations?

Both studies used 500 mg of Vitamin C and 400 IUs of Vitamin E. In the first study (AREDS or AREDS1), they used 15 mg of beta carotene, a carotenoid. When research showed a connection between beta carotene and lung cancer in smokers and former smokers, beta carotene was removed in AREDS2 and replaced with 2 other carotenoids: 10 mg of lutein and 2 mg of zeaxanthin.

Both studies included zinc: AREDS used 80 mg of zinc. In AREDS2, there were 2 groups, one with 80 mg of zinc and a second with 25 mg of zinc. Both groups had the same posotive results, but because AREDS2 did not have a true placebo group, the NEI says that the ‘gold standard’ for the formulation includes 80 mg of zinc. Because zinc removes copper from the body, copper was included: 2 mg of copper with 80 mg of zinc, 1-1.2 mgs of copper with 25 mg of zinc.

Bausch & Lomb has the patent to both the AREDS & the AREDS2 formulations with 80 mg of zinc. Because of that, their PreserVision products are the only ones with 80 mg of zinc. After AREDS2 results were published in 2013, many companies marketed their ‘AREDS2-based’ products with the same formulation but with 25 mg of zinc.

4. Who in the studies did they help?

They were effective in slowing down the progression to wet AMD (but not geographic atrophy) for some people with:

a) intermediate dry AMD.
b) wet AMD in one eye but not the other.

5. What about the rest: those who do not have AMD, have early AMD, have wet AMD in both eyes or have another form of macular degeneration such as Myopic Macular Degeneration (MMD) or Stargardt’s Disease (SD).

a) They were NOT tested on those who do not have AMD or have wet in both eyes.

b) They were tested on those with early AMD in AREDS but not AREDS2 because they showed NO benefit in the 6+ years of the study.

c) They’ve NOT been tested on those with another form of macular degeneration.

6. What’s the harm taking them if they weren’t tested on people like me?

Some of the ingredients are high doses. There’s been no research on whether taking them if you don’t need them is safe or effective. Would you take a blood-pressure-lowering medication if you did not have high blood pressure?

7.  What is the controversy about zinc in AREDS and AREDS2?

A 2018 study using the genetic profiles of some of the participants of the AREDS study (the first one where 80 mg was used) found that for 15% of the people with a specific genetic makeup (I call it being ‘zinc sensitive’), their AMD progressed faster than those in the study with a different genetic makeup.

8. I’ve heard not everyone agrees with those findings. What’s up with that?

This finding has been disputed by the NIH NEI researchers involved in the AREDS and AREDS2 research. The NEI, some eye specialists, and the AAO (American Academy of Ophthalmologists) take that side and say that genetic testing is NOT necessary because there is no difference in effectiveness of the 80mg of zinc based on genetics.

The opposite view is taken by the researchers involved in the 2018 and prior research. The genetic testing they used in that study and previous studies is available through your retinal specialist by the ArcticDX company.

9. My stomach hurts when I take PreserVision. Why would that happen?

The National Institute of Health’s Office of Dietary Supplements says that the upper tolerable limit of zinc is 40 mg.  According to their page, some of the signs of too much zinc are “nausea, dizziness, headaches, upset stomach, vomiting, and loss of appetite. If you take too much zinc for a long time, you could have problems such as lower immunity, low levels of HDL (“good”) cholesterol, and low copper levels. Taking very high doses of supplemental zinc can reduce your body’s absorption of magnesium.”

References

AREDS Results. ‘A Randomized, Placebo-Controlled, Clinical Trial of High-Dose Supplementation With Vitamins C and E, Beta Carotene, and Zinc for Age-Related Macular Degeneration and Vision Loss’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1462955/

AREDS2 Results. ‘Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial.’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369607/

 


go back to frequently asked questions

Hard to Know

We made it to Fort Lauderdale earlier this afternoon. We thought we could go and walk along the intracoastal waterway this evening but they want $50 to drive us there and back. No thank you! I guess that means you are stuck with me.

We flew Delta from Pennsylvania. My husband is sighted and was able to navigate through the airport for me. Overhead signs telling us about arrivals and departures were nothing I was able to read. However, if I had been traveling alone Delta does provide personnel to help the visually impaired from gate to gate. You can either alert a skycap or have your driver alert a skycap when you pull up at the curb. Detroit airport is massive. While I could have made my way by asking random people for help, it would have been easier with somebody assigned to me.

I looked over the Detroit airport accessibility plan. It was pretty much ADA right down the line. Heavy on physical disabilities. Same for the Lauderdale airport. Visual impairment does not get a lot of ink when they write these things.

I have my phone set so I do not get roaming charges while we are abroad. There are instructions online about how to go into settings to do that.

Both hotels we have been in have courtesy WiFi. Once I had trouble connecting and the desk clerk helped me with no problem. If you let people know you have a vision problem, they will help.

Being a tech novice and also fairly new to visual impairment, I am not sure how to work my phone GPS without having the phone data on and subject to roaming charges. Pretty sure there is a way but I am not sure what it is.

Oops. Yes, there is an online tutorial for that. You have to load the maps you think you will need before you turn off your data. Live and learn.

I got GPS on my iPad alright. I guess I will just need to carry that in case I get separated from my husband and need to navigate on my own. I can get GPS through Google Maps by using WiFi.

And since I have WiFi here at the hotel, I guess I can look at some articles. I have about 100 words to play with.

Just to complicate matters, Medscape recently did a post on genotyping and nutritional supplements. Assel et al quoted three studies all of which suggested there is no significant relationship between your genotype and your chemopreventive diet selection. What they are saying is “to zinc or not to zinc” is not a question. If you are a candidate for nutritional supplements, whether or not you use zinc does not make a difference.

Sometimes it is hard to know what to believe; huh?

Catch ya later. We get on the ship tomorrow around noon. Then I go black until Cartagena.

Written October 30th, 2017 Continue reading “Hard to Know”

Too Much of a Good Thing

by Cora Lyn Sears (see her biography at the end of this page)

2016 was a bad year. In the Spring I lost my hair, in the Fall I was diagnosed with wet AMD. How much worse could it get?

About 11 years ago I was diagnosed with mild AMD in both eyes, and took the Vitalux brand AREDS2 eye vitamins faithfully twice a day. (my mother lost her vision to AMD).

At my regular optometrist appointment last Fall it was determined one eye had advanced to wet. I was devastated! I hadn’t noticed much change in my vision, except I needed slightly more light to read and the reading portion of my progressive lenses seemed to have gotten smaller. The Amsler Grid still showed the same few wavy lines and few very light ‘puffs of smoke’ but nothing terrible. The speed of what followed was a bit scary – an almost immediate appointment with a retinal specialist followed by my first injection the next day.

Before this I had known of the injections for wet AMD but hadn’t thought much about them, thinking incorrectly a few injections would stop it almost permanently.

To date I’ve had the first three injections followed by the OCT testing which showed bleeding still happening. Then two more and another test. Still bleeding. Now on my next group of three.

I had begun researching and discovered your Facebook page and website, spending more time online than I thought possible. The more I read, the more I needed to read. The links to articles about the amount of zinc in my eye vitamins being a possible problem led me to search for the ones with less zinc, which were actually not that easy to find. Someone on your Facebook page suggested Walmart, which is where I finally bought them and switched in the late fall. [Lin/Linda: there are several options from Walmart, only PreserVision have the exact ingredients from the AREDS2 research study.  Click here to see what’s available.]

Now the other part:

Last spring I started losing my hair and within three weeks I was completely hairless. Alopecia universalis!  I tried everything my doctor or I could find with no success. An appointment with a dermatologist confirmed my worst suspicions that this was permanent. Apparently an autoimmune problem. Zinc enhances immunity, right? And I had been overdosing on it for over 10 years. So less zinc should help the autoimmune caused hair loss, shouldn’t it?

But then why is so much zinc in the AREDS2 formula when AMD is connected to the immune system as well?

In January I grew a few eyelashes, then came a few baby fine eyebrow hairs. Now, 14 months after losing my hair and seven or so months after cutting down the amount of zinc, I am starting to see a tiny bit of new growth on my head – only perhaps a few dozen or so, but it’s a start.

It’s amazing how everything in our body is connected and works in harmony, until it doesn’t.

An afterthought… Use the Amsler Grid by a window, not in the bathroom. I saw more wavy lines and puffs of smoke there than I had seen in the bathroom.

written July 23rd, 2017


I’m a healthy 70 year old woman. That’s hard to write as I really still feel 40. I live in Victoria, a beautiful city on the west coast of Canada. I’m divorced with two children and one older teenage grandson. I hike about 5 miles three or four times a week with a wonderful group of like-minded women. I’m a retired journeyman painter with varied creative interests such as sewing and photography. I love to travel, whether a road trip or something farther afield. I’ve followed a low-carb diet for years. I’ve had both hips replaced due to arthritis and sometimes I think if this was 50 years ago, I’d be sitting in a corner in a wheelchair going blind.

 Back to Our Guest Authors: Their Stories

I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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