Tag: vitamins

News: September 20-21, 2016

These are the links shared in the Facebook group for these dates.

News: August 30-31, 2016

 

News: August 27-29, 2016

Highlight: Why are you taking that?

June 24, 2016

I have published information about the AREDS/AREDS2 supplements in the past.  In the Facebook group, we’ve discussed the studies and the pros and cons of taking the supplements. Here’s the text of an article that I hope will clarify some of the concerns that have been expressed by eye professional.  The link to the article is at the end of this post.

A long-time patient presented for an exam the other day. This is a patient that I look forward to seeing, as we have some common interests that we chat about during his exam. He remarked that he really enjoyed coming for his exam, because he felt secure in the advice I give him. However, he also stated he has recently experienced an unsettled feeling in having to find a new primary care provider due to insurance changes.

Here’s a bit of history on this patient: He is in his mid-50s, myopic, but otherwise enjoys normal ocular health. He has a family history of age-related macular degeneration, with both his mother and maternal aunt having undergone anti-VEGF injections for wet AMD. Several years ago I measured his macular pigment optical density and found it to be very low. I prescribed a triple carotenoid supplement (lutein, zeaxanthin and mesozeaxanthin), his pigment level is now well within normal range, and he reports taking this supplement without fail. In reviewing his medications, I noticed an addition, an Age-Related Eye Disease Study 2 formula. Knowing I had not prescribed this, I asked him why he was taking it.

“Well, I was at the drugstore and saw the box. It said that it was the No. 1 doctor-recommended brand, and the only clinically proven formula, so I thought I would take this along with what you prescribed. It is only a vitamin right?”

Only a vitamin… So this patient who has stated he trusts what I recommend for his eyes has fallen prey to misleading advertising on a product label at his local pharmacy.

I asked him a few questions.

GM: Did the label state that there is no clinically proven benefit to taking the AREDS2 formula for patients without AMD or even those with mild disease, only a moderate benefit for those with intermediate to severe disease?

Patient: Well, no, it did not say that.

GM: Did the label tell you that taking large doses of zinc have been linked to the development of Alzheimer’s disease and prostate cancer?

Patient: No, the label did not say that either.

GM: Did the label state that other studies have found that vitamins C and E have no effect on the development of AMD?

Patient: No.

GM: Did the label state that high doses of vitamin E have been associated with increased risk of heart failure?

Patient: No.

GM: Did the label state that if you have the wrong genetics, the high dosage of zinc might accelerate progression of AMD?

Patient: No.

GM: Do you think I would prescribe this for you?

Patient: No, definitely not. I am throwing away the bottle when I get home!

Interestingly, 2 days after this encounter I read an announcement regarding the release of an AREDS2 formula plus a multivitamin. It was stated that the reason for the combination formula was due to the fact that 90% of participants in the AREDS2 trial that took an AREDS supplement also took a multivitamin (which in itself may have skewed the results of the trial). The piece also stated that consumer feedback and data showed that more than 50% of people older than 50 use a multivitamin.

Unfortunately, supplements do not face the same FDA scrutiny as drugs do. Consider what is seen in TV ads for drugs. The announcer lists a litany of possible side effects that the drug being advertised may have, all the while showing images of the supposed patient taking the drug playing with their grandkids or walking along a beach. Now imagine if a commercial for an AREDS formula vitamin had to do the same. Patients would likely think twice while in the drug store vitamin aisle about self-prescribing. And perhaps maybe they would ask for advice from their eye care provider.

References:

The Age-Related Eye Disease Study 2 Research Group. JAMA.2013;309(19):2005-2015. doi:10.1001/jama.2013.4997.

Awh CC, et al. Ophthalmology. 2015;122(1):162-169; doi: 10.1016/j.ophtha.2014.07.049.

Christen WG, et al. Ophthalmology. 2012;119(8):1642-1649; doi: 10.1016/j.ophtha.2012.01.053.

Leitzmann MF, et al. J Natl Cancer Inst. 2003; 95:1004-1007.\

The article above is from: http://www.healio.com/optometry/nutrition/news/blogs/%7Bcc9498b0-051f-44c9-948d-dac572140054%7D/gary-l-morgan-od/blog-why-are-you-taking-that

News: CVS faces lawsuit for claim about a store-brand eye product

April 10, 2016

For those who have intermediate and advanced AMD, doctors recommend the nutritional supplement that came through 2 NIH research studies: AREDS & AREDS2.  If you haven’t already done so, please read our post What about those eye vitamins?

The only product that has all the nutrients from the AREDS2 study is made by Bausch + Lomb PreserVision. CVS put their store brand supplement next to this one and labeled it “comparable to ongoing study formula in AREDS2.” A 91-year-old woman was diagnosed with AMD and the doctor prescribed the PreserVision product but because of the label, she switched to the CVS brand because it was half the price.

It is NOT comparable.  To read the whole story, click here.

 

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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Home

What to Do

Unfortunately, there are very few things that can be done for dry AMD. My ophthalmologist suggested the AREDS vitamins and sunglasses. These are things that will slow down the progress of the disease but will not cure it.

AREDS stands for Age-Related Eye Disease Study. Several years ago it was discovered that certain combinations of vitamins and minerals will retard the process of deterioration. Today, there are probably a dozen different types of eye vitamins that advertise AREDS formulas. [Lin/Linda: Since we published this in February 2016, we’ve learned more about these supplements.  They aren’t for everyone & they do have risks.  Click here for my page: AREDS/AREDS2: A Guide.]

Taking your vitamins is a wise idea if you’ve got moderate AMD or wet AMD in one eye but not the other.

Wearing your sunglasses is also a wise idea. The research suggests that ultraviolet light, that is blue and purple, is very harmful to your eyes. If anyone in your family has AMD or you have been diagnosed with AMD, it is important to wear sunglasses with UV protection.

Wearing your sunglasses is a wise idea.

I was a good girl. I took my vitamins every day. I also have the most serious, rocking collection of sunglasses you have ever seen. It became a joke. Whatever color I was wearing my sunglasses match. If you were going to be given lemons, you might as well make lemonade, right?

If you were going to be given lemons, you might as well make lemonade, right?

What my sweet, wonderful ophthalmologist did not tell me was how to cure what ails me. In fact, he told me there was no cure–well, ain’t that just dandy? He did tell me that it is a slow-moving process (more on that little mess later) and that my right eye might very well hang in.

Written in February 2016. Updated 2018.

Continue reading “What to Do”

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