Category: Research

Finally a Lab Rat

Hi! Things here are crazy. Absolutely going around in circles. I have a full counseling client load and am teaching not one, but two psychoeducational groups. Also trying to get some summer stuff going such as keeping the pool clean and cleaning out some stuff for the animal rescue group’s yard sale.

If I did not know I do it to myself all the time, I would feel sorry for myself!

But, no, I am not asking for sympathy. Just a little slack. It has taken me longer than it should have to tell you I was chosen for the study.

As I said, it is APL-2. It is a complement factor inhibitor. That means, again, that it interferes with the series of chemical reactions that leads to the complement immune reaction. The complement immune system, according to Wikipedia, is part of the innate immune system and therefore helps to make up the older of the two immune systems (innate and adaptive).  The innate immune system is sooo old  – your line: “how old is it? “ – that it is the immune system in plants, fungi, insects and primitive multicellular organisms. Jeez. Leave it to me to get a glitch in something that should have been perfected, like, a million years ago.

Anyway, activation of the complement cascade leads to the identification of bacteria, marking them as targets and the clearance of cell debris. That would be great, but for one, small problem. Since AMD is an autoimmune disease, the “target for tonight” is our own, healthy cells. A little bit confused, I would say.

The chemical in APL-2 is believed to “take out” a molecule that is involved in all three channels or courses or whatever that are part of the complement cascade. It is pretty far “upstream” as compared to some other treatments they have looked at in the past.

Be that all as it may, the study is double blind. That means I have no idea which of four treatment groups I may be in. My “handler” does not know either. Also, the doctor who does my measurements doesn’t know. The only thing I know is I am supposed to “get a shot” every month. That means I am either in the monthly treatment group or the monthly sham – read faking the shot – group.

After hearing some of the problems people who get regular eye shots have, I don’t know what to believe. Why? Quite honestly, I have felt exactly nothing and there is no evidence I have had a shot. No discomfort, no puncture mark, nada. I go back and forth between thinking there is no way it can be this easy and I must be in the sham group to thinking they really are that good at sticking people in the eye with needles!

Weird talent but I am going to assume I am actually getting the shots and be glad they display said talent. Might as well be positive. I will not know for sure until the trial ends in three years.

So that is that. After three and a half years I have achieved the coveted status of lab rat. It may not be the study I wanted but it was the one offered and I am finally fighting back. Feels kinda good.

Written June 23rd, 2019

Next: Lab Rats Unite!

Is the Waiting Game Over?

It is hard to recall exactly where in my personal journey we left off. Lin was very ill and things took a backseat. We have also been writing for Health Union’s site maculardegeneration.net and what I wrote about what and for whom is blurring.

Lin tells me I never told you I was in line to be included in a clinical trial..maybe. I say I’m sure I did…I think.

Be that as it may, let me tell you, even if I have told you before, I am in line to be included in a clinical trial. Sort of anticlimactic after anticipating something for three and a half years, but better late than never. [Lin/Linda here: check out Sue’s pages The Waiting Game and The Waiting Game Continues.]

I had wanted stem cells. Someday I will get stem cells, but just not today. What I am in line to get is APL-2. APL-2 is a complement factor inhibitor. It is in phase 3 clinical trials for Apellis. It’s been granted fast track status by the FDA which means its development and review will be expedited to get the drug to patients as soon as possible.

I was not super excited about APL2. I have not been able to read the published journal article on the phase 2 research because it has not been published. Poster presentation of the data suggested a slowing of the lesion growth by between a third and a half. There was no comparable reduction in the rate of acuity loss.

It really did not seem to me that that dog would hunt. I was less than enthusiastic but my retinologist assured me he thought it was great stuff with lots of potential. Also, it was the only game in town and I had gotten tired waiting. I told them I would be interested.

What is it? APL-2 is a complement C3 inhibitor. It interferes with the chemical changes that eventually lead to the immune system attacking an “invader”. However, this is a good thing because AMD is an autoimmune disease and the “invader” that is being attacked in this incidence is the host himself.

I am keeping my name in for stem cells…for now. Once I am enrolled in the trial, I am no longer eligible for inclusion in any other research. Better the bird in hand. APL-2 is next up and my retinology team does not appear to have anything else to offer me.

Like I said, I am tired of waiting and feel the time is right for me. I have a steady income I no longer have to actually work for and some flex in my schedule where I do work. My eyes are not getting any better and I remain a “good” candidate, relatively free of other medical concerns. For me, it is time.

The new master plan if I get in the study? Lobby to get into – or maybe I may even had to lobby for – the study to see how stem cell RPE replacement works in eyes treated with APL-2. Then, generously volunteer for photoreceptors replacement research. Nobody ever said that was no method to my madness.

In the meantime, it is all a waiting game. I have discovered research is a maddening, not at all straightforward endeavor. They ask a series of tantalizing questions and they you won’t hear for months. What happens next in my personal story? Well, I do have some other pages coming your way…

Written June 20th, 2019

Next: Traveling Blind Again

Like Sorting at Hogwarts

Back in the retinologist’s office. How delightful. I seem to have done pretty well on all of the tests except one. I am back here for a re-take. Hope they grade on a curve!

Not sure what happened. I really thought I was doing great. OK, so I often think I am doing great, but all the signals I got were positive. I was even told I was most likely in. Now I am not so sure.

I had no idea this was all so involved! I was here for nearly four hours the last time I was here. I had all sorts of eye tests and even a few physical ones such as a blood test and a blood pressure test. It was rather grueling, especially since we worked through lunch.

This time I am supposed to be here for less than an hour. Just the same, I brought a drink. I am not used to going for four hours without any fluid intake.

I am supposed to come back in a week. I guess that I am coming back in a week. I guess that depends upon whether or not I pass this test today.

Anyway, the next time is supposed to be something like four hours. Think I will pack a lunch.

The next time I am supposed to be “randomized”. Basically that means I will be sorted and assigned to an experimental group. Sort of like sorting at Hogwarts, for you Harry Potter fans. Just minus the talking hat. Gee, maybe I will get into Gryffindor!

They are running two experimental groups and a control group. The one group is monthly injections of the medicine. The control group is their pretending to give the shot and the second experimental condition involves altering the shot with medicine and the “pretend” shot. That mean I have a 66% chance of getting the medicine at least every other month.

Not that I believe I could influence the growth of my lesions just by believing I am getting medicine, but I will not be told which group I am in for just that reason. What people believe can influence the dangedest things, including physical things. It is called the placebo effect.

Three days later…

Well, I am still not sure if I am in, but I do know what happened to the one test. It was technical difficulty, a machine glitch. Nice to know it was not me.

I am supposed to get word by the end of the week. That would be nice. However, I am not holding my breath.

If I have learned anything in these last few weeks, it is to expect the process to be more complicated than it initially seems like it should be. There are secondary, dependent variables being assessed, for example. There is also a big, huge bureaucracy behind the scenes calling the shots.

Anyway, should be interesting. Now all I have to do is get in…and stay in for three, long years.

Written April 23rd,2019

Next: Finally a Lab Rat

I’m Bored – Again!

Hi, there! Again, I have not been given an assignment but I AM writing for a very good reason: I am bored! Nothing I should do is appealing. So I am going to write about…whatever. Send me an assignment if you don’t want this to continue happening. [Lin/Linda: yes, PLEASE give her something to do. She’s not happy if she’s bored, and “if she’s not happy, …” Do you know the rest of this phrase? ::grin::]

First of all, I understand we have had a large number of new Facebook group members. Although I am not one of your number, welcome! I think you will find we are a “country” without strict borders. Nearly all are welcome.

We do keep a dedication to the scientific method of inquiry. That means we like to have information that has been researched and proven to have, if not a definite answer to our communal problem, at least a flicker they are on the right road. In other words, if your great aunt heard that burning pocket lint in the microwave and huffing the smoke is a cure, we don’t want to hear about it. If that same process is being written up in a scientific journal, let us know!

We are also – as of this instant – nonprofit. Very nonprofit. If we are not making money on this project, NOBODY is making money. Therefore we do not take advertising, either straightforward or covert. People who have blatantly tried to sell things on these pages have been asked to leave.

If we can get you a hot discount on something we have used ourselves, we will do so. Occasionally you will see a page about a particular brand of merchandise. It s because one of us has been able to get a good deal.

That is pretty much it. Beyond basic civility, two rules: research-based and no advertising. Simple.

From what I understand – remember I am telling you my version of the “rules”, and I am not even ON FB! The girl can have attitude! – Lin has asked some people to watch the professional and lay media and report back. Want a job? I suspect she could use volunteers. [Absolutely LOVE volunteers!]

Leaving me something like 165-160 – words to share some info. I try to keep these pages to about 500 words. I cannot say for you, but my reading speed is significantly slower than it was. I don’t do well with dense prose. I assume you have the same problem.

News? Healio is reporting there may be a new anti-VEGF “kid” in town. Klondike Sciences recently finished a phase 1 trial on a compound called KSI-301. I am thinking the 301 means the 301st attempt. Maybe? In that case they are nothing if not persistent!

Be that as it may, the results were promising enough to do what will probably be a phase 2a study. That is another safety and tolerability study with more subjects. It is still early in the game for KSI-301 but it might prove to be of value.

Running out on my word count, so allow me to again say welcome! If you have a topic you would like researched, please let us know. As you can see, I get in trouble when I have nothing to do! [She does!]

Please ask! As a value we also have member empowerment. You remember Scholastic Rock? We learn because “Knowledge is Power!” Let us empower one another.

Bye!

Written January 4th, 2019

Next: THE TIME TO PREPARE IS NOW

Happy New Year 2019!

2019. Ready or not, it is here.

Not to make anyone feel old, but 2019 will be the 50th anniversary of Woodstock. (And October, 2020, Janis Joplin will have been dead 50 years. I still hear her on the radio almost weekly). 2019 is also the 50th anniversary of the first moon landing. How many of you could have predicted those things at the start of 1969?

Prognostication is a tricky business. Just ask meteorologists. (Which brings up another subject: does anyone else find 60 degree weather at Christmas to be scary? Lin/Linda: not if you live where it’s usually 60 degrees or higher at Christmas! ::grin::) However, with help – a lot of help! – from BrightFocus Foundation website (October, 2018), I will try to predict what we with Age-Related Macular Degeneration might have to look forward to in this new year.

Looking at the wet side of things first, now that they have proven treatments for neovascular, Age-Related Macular Degeneration, it is time to expand, refine and improve. New angiogenesis inhibitors – in other words, drugs that will retard the growth of extra blood vessels – are either on the market or will be coming soon. Some of the ones already on the market are Eyelea, Lucentis, Macugen, and Avastin.

In development are new, longer lasting anti-VEGF compounds. These things include Abicipar and Brolucizumab. Several of the ones currently on the market are also coming out in longer lasting formulas.

And let us not forget the new delivery systems in development. We reported on several different medication reservoirs that will allow patients to go two or three months without having to go in for a fill-up. Down the road, combination therapies, such as filling reservoirs with long acting medications, may allow people to go for shots every six to eight months if not longer.

Moving to the dry side of the street, things are starting to move on several fronts. My personal favorite is regenerative medicine, aka stem cell replacement/regrowth. We have spoken of the groundbreaking work being done with “the patch”. While I found nothing published about this since the spring, I cannot believe the research is not going on fast and furious. There are also studies being done in retinal pigment epithelial replacement by other companies. A search for Age-Related Macular Degeneration + stem cells yielded 34 hits on clinicaltrials.gov. Many of these are phase 1 studies. At least a few of them should progress to the next level.

Since there is a fair amount of evidence AMD has a lot to do with the function of the immune system, there are continuing efforts to intervene in the complement cascade. While lampalizumab fell short in phase 3 trials, APL-2 is entering phase 3 trials and looks promising. This medication is reported to intervene higher in the cascade process and is hoped to effect a wider range of patients.

And I haven’t even touched upon gene therapy or statin treatments or some of the most recent research in mitochondrial metabolism and AMD! All of these lines of study are showing some progress and may lead to finding a treatment and possibly even a cure.

Which study will break to the front of the pack? I have no clue. But one thing I do know is there will be progress made.

So back to Neil Armstrong from the Sea of Tranquility, 1969 “It is a great honor and privilege for us to be here representing not only the United States but men of peace of all nations, and with interest and the curiosity and with the vision for the future…”

May we, of all nations, patients and researchers alike, with interest, curiosity, and vision, continue to support one another in our quest for a cure for our shared nemesis, vision loss.

Happy 2019!

Written December 28th, 2018

Next: A MINOR EPIPHANY

Sue on Assignment: Mitochondria – Part 3

In the interest of full disclosure, I would like to say this: I appear to have screwed up. I could have sworn I read Stealth has gotten FDA fast track status for a phase 1 clinical trial of its mitochondria treatment, elamipretide. Not exactly. It is a phase 2b trial and not a phase 1. Consider this to be my correction and my apology. Mea culpa. Mea culpa. [Lin/Linda: Sorry, Sue, I can’t let you take all the blame. I didn’t catch it, either. Sorry about that.]

According to a Medtran article on clinical trial phases, phase 2a trials are to evaluated the short-term safety of a drug. Sounds like phase 1 redux to me. The phase 2b trial is to start to check the efficacy of the treatment. It is also used to determine dosage range.

The press release Lin sent me appears to be where I initially saw the new drug is injected subcutaneous. That is under the skin. That is that mystery solved.

The dosage schedule is to be daily for 24 weeks. Read six months for that. Zounds. I don’t like the idea of having to go monthly!

I looked up elamipretide + age-related Macular Degeneration on clinicaltrials.gov and got one hit. It was the phase 1 study that was done with 40 people at Duke University in Durham, North Carolina. This study was listed as active, not recruiting. Either phase 1 is not totally finished yet or they have not let the clinical trials.gov people know it is finished.

Looking back on what Stealth published in 2016, I found they were looking for people with intermediate AMD in at least one eye but no geography atrophy or, for a second group, people with noncentral geographic atrophy. An exclusionary factor was having received “eye shots” to prevent blood vessel growth (anti-VEGF treatments.) This study appeared to be totally for those with dry AMD. I am assuming the experimental design and exclusionary criteria for phase 2 will be the same.

It appears information on all of this is rather sparse right now. We will keep our eyes open and see what else we can learn.

And my boo boo? Ahhh, really sorry about that.

Written December 22nd, 2018

Go back to the list of “On Assignment” pages

Sue on Assignment: Mitochondria – Part 1

Hi, again! I am not exactly on assignment for this piece. More responding to a couple of messages we received from a Facebook member. She was expressing excitement over new research on mitochondria. Lin and I knew little to nothing about this line of inquiry and I decided to look a little more closely.

Mitochondria. I have defined this word before and will do it again here. First of all, mitochondria contain their own DNA. This DNA is different from the rest of the DNA in your body. Why? Thank you for asking. The reason is this: the DNA in the nuclei of your cells comes from both parents. The mitochondrial DNA comes only from your mother and your grandmother and your great-grandmother and so on into the recesses of history. Sort of neat when you think about it. Anyway, the head of a sperm is 23 chromosomes packed into this itsy, little package. Nothing else in there. The egg, on the other hand, is relatively massive. The egg contains all of the parts cells have. This includes mitochondria. Ergo, your mitochondria is the same as every female in your mother’s direct female lineage. It can also be found in the male children of these women. In other words, when it comes to mitochondria, girls rule!

And mitochondria don’t have any old, little job. Every cell in your body, and by extension you, is alive because of the tireless work being done by the mitochondria. Mitochondria are described as the powerhouses of the cell. It is their job to mix oxygen with nutrients and produce ATP, adenosine triphosphate. ATP is the fuel for the cell. No, ATP, cells die. Cells die; you die. Thank mitochondria for your life.

Mitochondria also do other things. In Mitochondria and the Many Disorders That Compose Mitochondrial Disease they reported mitochondria have other duties tied to the specialized duties of the cell in which they are lodged and these duties change as we age. It is these other functions of the mitochondria that can lead to problems.

All of which is a rather long-winded way of saying it is looking more and more like some eye disorders are related to mitochondria malfunctions. Age-related Macular Degeneration might just be one of them.

Back in 2015 when the above mentioned piece was published in Mitochondrial Disease News, they cited work being done by a company named Stealth. Stealth was working on Ocuvia, this was a topical treatment for back-of-the-eye diseases such as AMD. Although only tried in non-clinical trials (read “rat lab”), Ocuvia was hoped to have a protective function for mitochondria. The medication was hoped to be able to deal with excessive oxidative stress and decreased energy supplies to the cells of the eye.

In the words of Artie Johnson (Laugh-in, 1968 to 1973), “very interesting.”

Lin gave me a couple of articles to look at concerning what Stealth is doing now. It would appear they are following this course of inquiry and looking for ways to treat mitochondria and AMD. Get back to you later on that. Bye!

Written December 12th, 2018

Next: Sue on Assignment: Mitochondria -Part 2

Go back to the list of “On Assignment” pages

Sue on Assignment: Mitochondria – Part 2

Like I said, it looks like they are now investigating the role of mitochondrial DNA in retinal diseases. Researcher Christine Kenney proposed damaged mitochondrial DNA sends signals that cause retinal cells to die at an increased rate.

Since a woman passes her mitochondrial DNA to every one of her offspring – unchanged except for possible mutations – and each of her female descendants passes the same mDNA to her offspring, it is possible to trace maternal lineage fairly easily. And you want to hear something wild? See Wikipedia for more data but suffice it to say here, researchers believe they have located the time and region of the most recent, common, female ancestor for us all. Or at least of whom we are aware. This woman lived in sub-Saharan Africa about 150, 000 years ago. How many greats Grammy would THAT be? Wow.

Now, since then mutations have happened and subgroups – referred to as haplogroups – have been produced. And that gets me back on track here. Kenney discovered our family members who are Jewish and originated in Central and Eastern Europe – you can think of them as Aunt Millie’s kids in Cleveland if that makes it easier for you – have much more AMD than Aunt Mary’s kids in Dallas. Those family members are black and came from Africa.  For all intents and purposes, the only  consistent difference between these two branches of Mom’s family is their haplogroups.

Hmmm, the plot thickens.

Nw, the problem becomes, this is just one more line of inquiry for AMD research. We thought we were looking for the needle in two haystacks – nucleus genes and environment – and now we are looking in three! We have to add mDNA to the list!

Kenney has decided to concentrate on the mDNA “haystack”. She has compared the Ashkenazi Jews (Aunt Millie’s kids in my little family saga) to Aunt Margaret’s kids. Aunt Margaret’s kids are white, Western European.  Aunt Millie’s kids have major differences in cholesterol and lipid metabolism, different inflammation and complementary genes and they have different sensitivities to amyloid, a toxin found in AMD and Alzheimer’s disease.

It would seem Kenney is on to something.

Fast forward to this week. Stealth Biotherapeutics has been granted FDA fast track status for elamipretide, a mitochondrial targeted treatment for dry AMD. This is a phase 1 study and is concerned with safety and tolerability only. This stuff is very early in the game. [Lin/Linda: both Sue and I missed the part of this press release that says, “In early 2019, Stealth plans to initiate a Phase 2b, randomized, double-masked, placebo-controlled clinical study to evaluate the safety and efficacy of subcutaneous injections of elamipretide in patients with dry AMD with geographic atrophy.” Sorry about that!  You’ll see that we’ve added a page to this series – see the link below.]

Elamipretide is hoped to restore the mitochondria’s ability to produce energy. It can be applied directly to the eye or injected. I thought I saw it could be a standard injection and not an eye shot, but now I cannot find where I saw that. Don’t hold me to it.

And there you have it. Here is another, possible line of inquiry for discovering what is happening to our retinas. And more importantly, in trying to stop and maybe even reverse it. Here’s hoping!

(And a special thanks to our cousins, those of  Ashkenazi descent, who are participating in this research. Their mDNA makes them like Baby Bear, “just right”,  for the research. Their willingness to help might take us to a cure.)

Written December 13th, 2018

Next: Sue on Assignment: Mitochondria -Part 3

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AREDS/AREDS2: One Bite at a Time – Bite 2

Continued from BITES

Scientific Evidence From the AREDS & AREDS2 Studies
AREDS
  • Which participants in the AREDS study benefited?
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • The numbers:
    • 25% less likely when they took the antioxidants (Vitamin C, Vitamin E, Beta Carotene) and 80 mg Zinc.
    • 17% less likely when they took just the antioxidants, no Zinc.
    • They did NOT find any significant reduction in risk for those with early AMD.
    • The participants who did not have AMD were in a section of the study on cataract formation not the AMD part of the study.
  • What became the PreserVision formulation from the study that became available in 2001? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc) and 15 mg beta carotene.
AREDS2
  • Which participants in the AREDS2 study benefited? Just like in the AREDS study:
    • Only those with intermediate AMD or those with advanced AMD in one eye but not the other eye were less likely to progress to advanced AMD – only the wet AMD – than patients who received a placebo over the 7-year study period.
    • They did not protect from advancement to dry advanced AMD called geographic atrophy.
    • There were no participants who did not have AMD or who had early AMD.
  • The numbers:
    • It’s not easy to break down the results as was done above for AREDS.  There was no placebo group so everyone in the study got some kind of treatment.  The groups who had the most benefit took the AREDS formulation of 500 mg Vitamin C, 400 IUs Vitamin E but without beta carotene (high risk of lung cancer). Lutein & Zeaxanthin were substituted.  There were 2 groups who took this formulation but different doses of zinc: one group got 25 mg of zinc and one group got 80 mg zinc.  Both groups did equally as well.
    • There were no participants in the group who had early AMD because the previous study (AREDS) did not find any benefit for them.
  • What became the PreserVision formulation from the study that became available in 2013? 500 mg Vitamin C, 400 IUs Vitamin E, 80 mg Zinc, 2 mg Copper (because of the zinc), 10 mg lutein, and 2 mg zeaxanthin.

Next: Are There Risks to Taking AREDS/AREDS2?

AREDS/AREDS2: One Bite at a Time

First, we need to talk about how AMD starts and progresses. Also, I’ll introduce some terms about the AREDS/AREDS2 supplements.

We cannot tell you if you should take the AREDS/AREDS2 supplements. We can only give you the information for you to make an informed decision.

Facts about AMD – for more information, watch this 4 minute video.
  • Everyone’s rate of progression of AMD is different. There are many risk factors, and everyone has a different combination of them. If the risk factors were letters of the alphabet, you may have A, C, F and Z. Another person may have A, R, and T.
  • I used the letter A in both examples because we all have a genetic makeup which in determined partly by heredity but includes other genetic factors as well such as gene mutations. For a simple explanation of genetics, read The Basics of Genes and Genetic Disorders.
  • Genetics plays a big factor in AMD. In a large study of twins including elderly twins, they reported that “Genetic factors play a substantial role in the etiology of AMD and associated macular characteristics, explaining 46% to 71% of the variation in the overall severity of the disease. Environmental factors unique to each twin also contribute to the occurrence of this disease.”
  • Although having a first-degree relative with AMD (parent) increases a person’s risk of developing AMD, not everyone whose parent has or had it will also develop it.
  • Risk factors are NOT causes.  A risk factor is something that increases the likelihood of a disease to develop. A cause is something that if it is there, you have the disease. We know some of the risk factors for AMD, but we don’t yet know the cause.
  • Everyone who has AMD started with the dry form. Some people don’t get diagnosed until it has turned to the wet form.
  • The dry form usually progresses slowly, but that is not always the case.
  • The stages of AMD are early dry, intermediate dry, advanced AMD which can be wet or advanced dry which is called geographic atrophy.
Basics of AREDS/AREDS2 Research – for more information about AREDS & AREDS2, read this article.
  • AREDS stands for Age-Related Eye Disease Study.
  • There were 2 studies: AREDS ran from 1992 to 1999 (7 years). The results were published in 2001. There were 4,757 people enrolled ages 55-80 years old (mean age 69), 56% were women, 96% were white. DNA was collected. The study was conducted by the NEI and funded by Bausch & Lomb.
  • AREDS2 started in 2006 and ran for 5 years. The results were published in 2013.  There were 4203 people enrolled in the study, ages 50-85 (mean age 74), 57% women, 97% white. The study was conducted by the NEI and funded by Bausch & Lomb.
  • There is only 1 brand of an AREDS or AREDS2 supplement that has the exact formulation as was used in the study: Bausch & Lomb’s PreserVision because they hold the patent.

Next:  SCIENTIFIC EVIDENCE FROM THE AREDS & AREDS2 STUDIES

Scientific Articles for AREDS & AREDS2

AREDS results:  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

AREDS2 results: Effect of Omega-3 Fatty Acids, Lutein/Zeaxanthin, or other Nutrient Supplementation on Cognitive Function: The AREDS2 Randomized Clinical Trial

Other References

The US Twin Study of Age-Related Macular Degeneration: Relative Roles of Genetic and Environmental Influences

Got Milk?

Hi! How are you all? Lin tells me one of the latest developments of interest to the group is research that was just completed in Dublin and Alabama and reported by Healthline and other sources. They have found calcified eye spots linked to the progression of Age-Related Macular Degeneration. According to the article, there is a six-fold incidence of progression to advanced AMD in those who have the calcification as compared to those who do not.

Now linkage – or correlation – does not mean the factor causes the condition. I have said dozens of times “correlation does not mean causality”. But with that said, it seems something is going on here.

As far back as 1997 (Characteristics of Drusen and Bruch’s Membrane in Postmortem Eyes with Age-Related Macular Degeneration, Spraul and Grossnikulus), there has been evidence to suggest calcification and fragmentation of Bruch’s membrane have something to do with the progression of AMD. And that would be especially wet AMD by the way.

We have also known for a while that drusen are made up of lipids, minerals and protein. Because of the recent research, we now know hydroxyapatite in drusen suggests progression to advanced AMD. What is hydroxyapatite? It is the main inorganic material in tooth enamel and bone. It has calcium and phosphate in it. In short, we need it. No calcium and phosphate in our bodies and our bones become extremely brittle. That is EXTREMELY brittle.

Why is this stuff going to our eyes and not into our bones? It does have other uses in our bodies, but for my purposes here, my answer is I have no clue. Ask your doctor.

Throughout the article (as well as some other articles I scanned) it was suggested this discovery may someday help people to find dietary answers to AMD. That is a huge emphasis on someday folks. No one is ready to tell you to limit calcium and phosphorus.

In the Healthline article on calcification, it was reported that while 99% of the calcium in your body is generally in your bones and teeth where it belongs, some disorders may cause it to go to other locations. These causes may include infection, calcium metabolism disorders, genetic or autoimmune disorders and/or persistent inflammation. (If I had to buy the proverbial pig in a poke on this one, I would go with one of the last two options, but, again, what do I know?)

The Healthline article goes on to report researchers have not found a link between dietary calcium and a higher risk for calcium deposits. That apparently means my lifelong love affair with milk and ice cream is safe for now. Phew! [Lin/Linda: the title Got Milk? comes from the past campaign run by the California Milk Processor Board.]

Preventing calcification may initially involve nothing more than asking your doctor for regular blood tests checking your levels. Too high? Check your medications first. Cholesterol, high blood pressure and hormone replacement medications can mess up the way calcium is used in your body. Stop taking calcium-loaded antacids and have your kidney and parathyroid functions checked. Those can be factors as well. Lastly, STOP SMOKING! Smoking is associated with increased calcification in your heart and major arteries. It may not be putting calcium in your eyes, but if you die of a heart attack, that is a moot point.

Finally, listen to your doctor. None of us is getting any younger. Many of us are dealing with snafus in multiple systems. If your doctor says you need extra calcium, take the blankety-blank extra calcium! The current research on drusen is preliminary at best and should not interfere with the treatment of other conditions.

Bye! Take care! Remember my research skills come cheap, as in free. Keep those cards and letters coming!

Written November 11th, 2018

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Article: Beyond the tip of the iceberg – AMD and nutrition – Part 4

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Dr. Narayan summarizes what is known about smoking and AMD and what approach he would take (last 4 items):

  • Smoking is a major modifiable risk factor associated with AMD.
  • Smoking increases the risk of AMD two to four-fold.
  • Pack-years smoked better reflects the amount of exposure.
  • Cigarette smoke is comprised of a gas and tar phase containing chemicals with a high concentration of free radicals.
  • Cigarette smoke induces ‘pro-inflammatory’ changes in the RPE, along with oxidative damage.
  • Risk of AMD remains present for many years after cessation of smoking.
  • Passive smoking carries risk of AMD.
  • Public awareness of the link between smoking and ocular health is lacking.
  • Eye care providers have a duty of care to inform patients of the long-term ocular risk of smoking and AMD.
  • Electronic cigarettes are considered ‘safer’ than conventional cigarettes, although more research is needed.
  • Smoking cessation (using Very Brief Advice; VBA) with a discussion of dietary modification is recommended.
  • AREDS and AREDS II formulations only indicated in intermediate/late stage AMD.
  • AREDS formula (beta carotene) carries increased risk of lung cancer in smokers.
  • AREDS II: lutein plus zeaxanthin a better substitute for beta carotene.
Smoking and AMD: Detailed Information

In this article, Dr. Narayan writes, “Smoking status and history is important and, although currently lacking a standardised definition, generally falls into three categories:

  • Current smoker
  • Previous smoker
  • Never smoked

“Several studies have compared different levels of smoking, classified as pack-years, and most of them confirmed a dose-response effect for AMD. Pack-years smoked better reflects the amount of exposure over a lifetime of smoking. To calculate pack-years of smoking, the average of the number of cigarettes smoked per day is divided by 20 to give packs per day and multiplied by the total number of years of smoking.

“Current-smokers have two to four-fold increase in risk for developing AMD when compared to patients that never smoked. Current and former smokers were found to have an increased prevalence of late AMD, although a recent study also found an association of early AMD features with smoking. The increased AMD risk appears to be higher in those patients who have smoked 20 pack-years and more. There is bad news for people living with smokers too: passive smoking, ie living with a smoker for five years or more, increases the risk for AMD among non-smokers.”

For MUCH more, please read the full article.

NEXT: LAYER 5 – Aging of the eye

I’ve not had the time to do this page. Here is the article  ‘Beyond the Tip of the Iceberg: Getting Older’–>https://www.opticianonline.net/cet-archive/5054

The summary says, “The majority of the population have age as their only AMD risk factor.

Discussions of positive lifestyle modifications including:

  • Mediterranean diet
  • Greater consumption of chicken rather than red meat
  • Absence of smoking
  • Regular physical exercise
  • Vitamin D awareness

AREDS-based supplements not indicated.”

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 3

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 3 – Patients with a family history

There are various statistics cited for the impact of family history on the development and progression of AMD.  Dr. Narayan says that those patients with a family history “…should be made aware of the increased risk to their siblings and children, who need to have scheduled eye examinations for detecting the intermediate stage of AMD and be encouraged to assess their own visual acuity using monocular vision testing (usually the Amsler grid) and seek medical advice and urgent intervention if they develop visual symptoms of distortion or reduced vision.” He adds, “…AMD patients should also have an awareness to pass information to their first-degree relatives on the importance of risk reduction strategies including avoiding smoking, a healthy lifestyle with good nutrition.”

Is nutrition important to those whose main risk factor is a family history?  Dr. Narayan writes, “The Rotterdam study looked at the impact of diet in over 2000 individuals who were at genetic risk and were AMD free at the start of the study.”

“The study found that the NRV (formerly RDA) intake of antioxidants, zinc, and Omega-3 fatty acids may reduce the risk of early AMD among those at high genetic risk. Suggestions for what to eat included was based on the sources of the three groups studied in the trial is summarised in table 4.”

Table 4: Recommendations from the Rotterdam study

 

 

 

 

 

 

He summarized his approach for this group:

  • More than 80% of patients with late-stage AMD have a genetic predisposition.
  • First degree relatives, particularly siblings should have routine eye examinations.
  • Observational studies support the use of nutrition/ supplementation whose dosages are inline with the NRV.

Next: Layer 4 – AMD and Smoking

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 2

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 2 – Those with early dry AMD

Dr. Narayan says, “In AREDS, only 1.3% of participants with early AMD as shown in figure 2 progressed to late AMD within five years. The AREDS demonstrated that there was no statistically significant evidence of a benefit in delaying the progression of eyes with early AMD to more significant drusen-related pathology (intermediate AMD) through the use of antioxidant vitamin and/or zinc supplementation. ”

“This review highlights the multifactorial influences of diet and food intake on the incidence and progression of AMD. As diet is a modifiable risk factor for AMD, improvement to diet and food intake. coupled maintenance of a healthy body mass index, healthy diet, physical activity and stress management should be encouraged.”

Approach for this group:

“There is the challenge for patients in this group to obtain the nutrients they need from their daily life. If they smoke or acknowledge a poor diet and lifestyle, then taking a supplement may be beneficial in a general way.

In summation:

  • The progression from early to advanced AMD within five years occurs in just over 1% of patients.
  • Specific studies on how the risk of progression in mild AMD is influenced by diet and lifestyle are few, but several population studies show benefit for overall risk.
  • Taking the pragmatic approach, all that we would say to someone to keep their eyes healthy can be applied here – smoking cessation, advice on sun protection.
  • Adopt a healthy lifestyle: a healthy body mass index, healthy diet, physical activity and stress management.
  • The highlights of the population studies are summarised in table 3 below.
  • College of Optometrists Leaflet ‘Healthy lifestyle, healthy eyes’.
  • There is no evidence to support the use of high dose antioxidant vitamin and mineral supplements for patients who have less than intermediate AMD.

Table 3: Recommendations on dietary intake

Next: Layer 3 – Patients with a family history

Sue on Assignment: How to Conduct an Experiment for Yourself

Lin sent me a copy of the WebRN-Macular-Degeneration News “article” (read advertisement) for Saffron 20/20. I did not know whether to laugh or to scream.

Oh, they were very careful. Nowhere in there did they say “cure”. Nowhere did they say “proven”. They did not even get a toe across the line and use the word “treatment”. All they did was ask why we should not listen to “regular people” just like me and you. Very clever.

I enjoy seeing clever manipulation. The art of the con is time-honored in America and Great Britain and probably a couple of thousand other places. P.T. Barnum opened a museum that was so popular people would come and stay all day. There was no room for any more paying customers.

Barnum solved the problem by putting up a sign saying something like “This way to the amazing egress!” It was only when they were standing on the sidewalk outside the building that they figured out egress is another word for exit! People just followed along.

The word shill is thought to come from the British word shillaber. A shill is a plant. He is the “lame” guy at the medicine show who ends up dancing the jig. He amazes people into buying the snake oil potion.

In other words, never trust testimonials. You just might end up going to see the egress!

That said, I use turmeric every day. Someone told me it would help with my rotator cuff tendonitis and I decided it couldn’t hurt and it just might help. I also started using a muscle rub and tying my arm to my side when I slept. The better not to sleep with it above my head, my dear. Something worked. I have no clue which change it was, but it worked.

Remember how I parrot my father and say do as I say, not as I do? This is another instance of that. I have gone about this turmeric thing totally WRONG. The turmeric people may have me buying something worthless because a yoga acquaintance said it works.

Although I trust the girl who told me about turmeric, she may have sent me to see the egress.

What should I have done? How to Properly Self-Experiment with Supplement, Herbs and Functional Foods is an article outlining how it is done.

First of all, the author suggests you do your research. Is there evidence this stuff may work? In my case, yes, turmeric is a known anti-inflammatory. But after that, I went off the rails.

I didn’t change one thing at a time. I changed three! Wrong! I never researched dosage. Two in the morning and two in the evening seemed right. I also never kept track of my progress. No pre- or post-testing. I failed scientific method 101.

Testimonials, anecdotal evidence, are not “bad”, but they are not the complete truth either. At best, they are not much more than a hint of what might be true. At worst, they are a purposeful con.

If you want – and it will not cost you much in time, money, and perhaps even more importantly, in misplaced faith – go ahead and try things “real people” endorse. But do it wisely. Follow the guidelines in the article, not the guy who tells you the egress is amazing.

Written September 30th, 2018

Next: More Sue on Assignment coming soon!

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Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Sue on Assignment: AREDS2 Study & Geographic Atrophy – Page 2

Hi! Back with trying to understand the last, three pages of the article “Progression In Geographic Atrophy in Age-related Macular Degeneration”.

It would appear they are having trouble figuring out exactly how these suspect genes are causing the problems they seem to be causing. Like watching a magic show: you know the magician has something to do with what is happening but you cannot seem to figure out how he is doing it!

They have come up with theories, of course. Some people think ARM2 encodes for a mitochondrial protein. Remember the mitochondria are the powerhouses of the cells. Others believe the ARM2 gene has something to do with our old friendly nemesis, the complement immune system.

While in some cases they believe it makes more sense to believe one mechanism is responsible for several lesion characteristics, in other cases they believe there are separate mechanisms at work. And to make matters even more complex, they are thinking the whole thing may work on the “Goldilocks principle.” In other words, certain genes may not necessarily be bad or good. Like the chairs and the porridge, they may have times they are “just right” and highly beneficial for the cell. Other times? Not so much.

In short? Damned if I know and, more importantly, damned if the researchers know either. However, they are hot on the trail of…something.

Right now at this stage of the game, they are collecting knowledge. It may be quite a while until they connect the dots with all of this stuff, but connect the dots, they will. Then we shall see what the picture is.

So, what did I get out of this article? A lot of questions. Like good investigators, right now the researchers are gathering data. The AREDS2 study has made available to researchers thousands of people with AMD. These people are being poked, prodded and scanned in the name of trying to understand the nature of the beast. No clue what they may find but the hypotheses being generated are intriguing. Which one do you think may prove to be right?

Written September 20th, 2018

Next: coming soon!

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“Wrap Up” Blindness in our Lifetime!

Money! Money, money, money, money…MONEY! (O’Jays- 1973). Healio reported the University of California at San Diego has been given a $50 million dollar grant to found a research center specializing in ophthalmological research. The areas focused on will be glaucoma blindness and retinal degeneration. They are hoping the new center will speed the pace of discovery and innovation. The philanthropist was Andrew Viterbi.

Also in Healio, it was announced Wills Eye has received a $5 million grant to establish the Vickie and Jack Farber Research Center at the hospital. This $5 million from the Farbers comes on the heels of a previous $2 million gift. It also follows up a large grant for the establishment of the Vickie and Jack Farber Institute for Neuroscience at Thomas Jefferson University. The target of future research is to be neurological and eye diseases.

And want to know something crazy? Jack Farber’s corporation has roots in this area, North Central Pennsylvania! If you have ever bought ribbon from Berwick Offray (world’s largest manufacturer of decorative ribbons and bows according to Wiki) or seasonal decorations from Paper Magic, you have contributed to these philanthropic gifts. Cool.

Apparently, the take-home message here is keep wrapping those gifts…lots of ribbons! Let’s “wrap up” blindness in our lifetimes! (Ouch!)

Unfortunately, I am not a multimillionaire, so I guess I have to make my contributions to the cause smaller…a lot smaller. Like prattling along on this page, for example.

Saturday I went whitewater rafting for the first time since I lost my central vision. Now whitewater rafting is not really high on the lists of a lot of people, but I love being on the water and this was one of the things I wanted to do to get back to “me.”

I found a local group of people young enough to be my grandchildren, (if I had any) and I went along with them. Everything went swimmingly – no pun intended and no, I did not fall in. The welcome I got was great. They even suggested I come along caving in December…uh, no, thanks.

Going with them was a tad unorthodox, but sometimes you simply have to do what works. Effectively, that is.

You want to know my biggest challenge all day? Engaging the zipper on my life jacket! It made me realize jacket and coat weather is right around the corner for us here in the northern hemisphere. And I am woefully unprepared.

I looked online for some great wisdom about relearning how to engage zippers after sight loss and I did not find much. The advice they give is the same advice you gave your preschoolers: practice, practice, practice.

So, today’s suggestion is to check your winter coats and see if they have buttons or zippers. You might be a bit better off with buttons (maybe. I misbuttoned a blouse the other day). If you have zippers, now is the time to practice. Asking strangers to help dress you can be a bit humiliating….it was a good thing the girl fitting life jackets was very nice.?

Written September 5th, 2018

Next: Red Hair?

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Red Hair?

My father not only had dry age-related macular degeneration. He also had Parkinson’s Disease and the associated cognitive disorder, Lewy Body Dementia.

I never gave a great deal of thought to an association between the two conditions, AMD and Parkinson’s, but it appears other people have. A post in clinicaltrials.gov states they are looking for people with both Parkinson’s and AMD to study – and I quote – “Prevalence of Age-Related Macular Degeneration in Parkinson’s Patients and Assessment of the Role of L-DOPA ( AMD PARK).”

After that, we sort of wade into the deep end of the pool. The brief summary states several studies have shown Parkinson’s patients treated with L-DOPA develop AMD later than untreated patients. A WebMD page from November 12, 2015, reported there was a negative correlation (something increases and then something else decreases) between taking L-DOPA for Parkinson’s and development of AMD. The study did not assume a cause-effect relationship or conclude AMD patients should take L-DOPA.

In the body, L-DOPA becomes dopamine, a neurotransmitter. Dopamine has a myriad of functions in the body including motivation and reward, motor control and photoreceptors functioning.

So far so good. However, the bottom of the pool drops off on me back in the clinicaltrials.gov summary. The summary “explains” L-DOPA is an “endogenous ligand of the GPR43 receptor…located on the RPE’s cell apical pole….It appears L-DOPA, by stimulating this receptor, decreases the cell’s exosome release.”

Of course, it does! Yeah. Good grief!

Ok. Endogenous means it comes from inside. A ligand is…heard that before, hold on…is a molecule that binds to another molecule. Apical means related to the apex and exosome means an extracellular vesicle. GPR43 has something to do with inflammatory signals.

In other words, we are back to the complement immune system. L-DOPA might keep RPEs from signaling for help and accidentally calling in friendly fire on themselves. Maybe. Not only is this me, your ever loyal social scientist, trying to interpret this but they are still doing the research. Stay tuned for further developments before you quote me on these points. This could all be way off the money.

Back to the WebMD article, I discovered I was waaayyyy ahead of the pack in developing my GA. The average age for the development of AMD according to this article was 71. (Gee, nearly ten years ahead of most of the rest of the folks. Here I am. Overachiever. Not!) The average age for those on L-DOPA was 79. (Things that make you say “Hmmmmm…” No wonder they are studying it.)

And another fact just for human interest: both Parkinson’s and AMD are more prevalent in those with red hair. There does seem to be some weird link here. All the scarier because I had natural, red highlights all the years I was growing up. Another hmmmmmm…but we won’t dwell on that.

So, there you have it. There appears to be some sort of connection among Parkinson’s, AMD and, yes, red hair. We are not sure what it is yet, but they are working on it. Maybe L-DOPA will be the new treatment. Stay tuned.

Written September 7, 2018

Next: Taking Some Time Off

HOme

No Train for Christmas

Hi! Server is down again. This does not bode well. I have two hours I could be working, but I guess I bother you folks again.

Like I said, Lin gives me stuff. This one she gave me with the warning I need to be good. Generally, that is advice that goes in and one ear and out the other. I am a brutally honest sort. One of my mother’s favorite questions for me growing up was “Can’t you lie?” I assume you get the point. [Lin/Linda: Sue is paraphrasing what I said. What I said to her didn’t include a ‘warning’.  Whatever advice I DID give her obviously went in one ear and out the other. ::grin::]

The last article Lin gave me was the results of a poll taken by general ophthalmologists, retinal specialists, and patients with AMD. The poll asked for the highest priorities in retinal research. Number 1 was “the development of choroidal neovascularization.”  Number 3 was “retinal hemorrhaging.” Both of these are, of course, related to wet AMD. The second one had to do with studying geographic atrophy, i.e. advanced dry AMD.  Number 4 was “gains in vision.” Number 5 was “slowing vision loss”, and 6 was “serious ocular events.”

Now all of these are fine and noble areas of endeavor. I don’t have a problem with any of them in theory. So, why did Lin suggest I try to behave myself and not stir up trouble? Emotionally I have some problems with it.

Imagine a kid at Christmas. Her brother gets a train. She gets told there was nothing available for her they could buy. She gets nothing.  The next year her brother gets a bigger and better train. It will run smoother and go faster. She gets nothing. Her parents tell her they thought there might have been something for her, but it didn’t work out. Maybe next year. Next year comes and brother gets all sorts of accessories plus an even better train. Nothing for our girl. Nothing available.

I am getting tired of being that girl. I go to the research and there are nine, different, exciting opportunities for advancements in Wet AMD research. The tenth one may be for dry AMD, but it is often something that has since “died” in clinical trials.  No joy again.

Very selfishly, I feel we need to be first on the list. I appreciate you wet folks go blind more severely and much faster. I appreciate eye shots can be pretty horrible. The thought of having someone put a needle in my eye might make me want to throw up.

On the other hand, I would also like you wet people to try to appreciate what it is like to come to the table time and time again (or to the Christmas tree. Sorry for mixing metaphors) and come up empty. Think of the frustration and the demoralization of religiously looking, reporting great news for other people …but finding nothing for you.

Eye shots are horrible, but if they could come up with an eye shot that would stop the progression of this disease, I would be fighting to be at the front of the line. At least it is something. Right now we have nothing. [Just to be clear, the injections for wet AMD do NOT stop the progression of AMD. They work to protect the vision a person has. Sometimes, that only works as long as one is having injections. Sometimes, sadly, they don’t work at all or for long. In either case, there is no way of knowing ahead of time – it’s an injection-to-injection battle.]

So, yes, I get snarky, and I can be offensive. Some people don’t like my snide comments about how the wet people have another, miraculous advance coming down the pipeline and we have…nothing. Please just remember how blessed you are and wish your dry brethren a little bit more than nothing under the tree…and spare me a charitable thought when I look with jealousy on what you have. It is not easy out here.

August 28th, 2018

Next: “Wrap Up” Blindness in our Lifetime!

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Life After Vision Loss

I have been ignoring you. This is my first page in eight days.

I have not been ignoring you on purpose. I have been having what I consider to be a raging case of seasonal allergies (my husband swears I caught a germ) and fighting that. I have also been doing other things such as going to exercise, a benefit supper and work. September we go back to the second half of our “free” training, and I need to have my homework done.

I say this not to garner sympathy or admiration but to make this point: there is life after vision loss. Vision loss does sometimes shrink into the background. Sometimes wondering if you will ever get through a day without hacking up a lung or pondering where the hey the answer to question six is in the handouts really does take precedence.

And with that reassurance – there really is life after vision loss! – I want to move on.

Lin sends me stuff. I know the Facebook group has talked about the topic of blue light to death, but let’s quickly do a review of the article she sent me.

The article is Can Phones Make You Go Blind? In my short time on Earth we have gone from heavy, Bakelite monstrosities with little operators who hated kids living inside of them (I swear. I had a bad experience when I was about three. The little operator in the phone yelled at me to stop playing with the phone and behave myself. It was traumatizing!) to little, pocket-sized things (on which kids play all day. Go figure.) These little, pocket-sized things emit blue light that destroys retinas. The only way the old, black phones of my early childhood could have blinded you was if someone hit you over the head with one. I guess this is progress.

Anyway, it seems blue light will cause the chemical retinal (that is “retin- all” for pronunciation) to morph into something toxic. It all has to do with oxygenation and reactive oxygen species (ROS). ROSs sort of run amok damaging other cells. Ever heard the term free radical? It is all related.

Bottom line is, we need oxygen to be used in the chemical processes of life. Cannot cut that out of the equation. Also, in this technology-crazy world, screens that emit blue light pretty much rule. I will give up my device when you pry it out of my cold, dead hand. Besides, technology makes vision loss tolerable for many of us.

The answer appears to be putting “shades” on all of your devices. Blue light filters come in a variety of sizes. Most of them just mold to your screens. No muss and no fuss.

Amazon has a selection of blue light filters available. A lot of them cost in excess of $40. Potentially a little expensive.

There is another option, however. Amber lenses can do pretty much the same thing. Sunglasses with amber lenses block blue light and can be worn while you look at any screen. One purchase rather than several. Another benefit of wearing amber lenses and blocking blue light is, according to the research, better sleep.

Get shades for your screens or you wear shades yourself. Either way, it is best to avoid that pretty, blue light.

Lin/Linda: As with so many topics in the field, since I gave Sue the article she’s written about, this article was released: No, Blue Light From Your Smartphone Is Not Blinding You. This article is from the American Academy of Ophthalmology (AAO), and it says, “Blue light from electronic screens is not making you blind. A recently released study has been creating both concern in the public and alarmist headlines from news outlets worldwide. But experts are cautioning that the news reports are leaping to unfounded conclusions about the potential effects of blue light on the eye.”

Written August 28th, 2018

Next: coming soon!

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What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10

References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

From the Top of the Pile

Greetings. Another day gone, but I am not sure where. After doing some work-work and yoga and a puppy walk and other assorted nonsense, I decided some of the piles in my home “office” – and believe me, I use the term loosely – had reached critical mass. What do I have in this mess, exactly?

Well, it appears generic drugs for wet AMD are coming our way. Or maybe they are “look alike,” drugs but that term has a bad connotation. The article says “biosimilar” so maybe we can go with that.

Whatever term you use, the Indians are coming up with some medications that pretty much do the same job as some anti-VEGF drugs being manufactured here and in Europe. The one the Medscape article highlights is called Razumab and it is a stand-in for ranibizumab.

The article goes on to explain biosimilar drugs are designed to replicate the molecular structure of existing biologics. Like generics, they cost much less…hmmmm. I don’t think I have to guess what big pharma thinks about that!

As might be anticipated, these biosimilars are not yet available in the States. The FDA has not yet approved any biosimilar for ophthalmic use but that does not mean it won’t happen. The Wiki people have a current list of 11 biosimilars already approved.

As of the date of the article, they were having a few problems with manufacturing consistency from batch to batch. In other words, not yet ready for primetime. However, stay tuned.

We did a cursory look at the Retina Specialist Pipeline Update several pages ago. Looking at all of the potential new treatment for wet AMD, I kept seeing the term “novel antibody.” I just did a search and did not get far on that term. My best guess is they are manufacturing new antibodies for specific purposes.

Anyone want to explain “novel antibody” in one and two syllable words, I would like to hear from you.

And here is an article of everyday practicality from WebRN. The title of the article is Macular Degeneration Aids for Grooming. The article suggests a lighted make-up mirror for both sexes and electric rather than blade razors. The better to not cut your own throat, my dears. Shampoo should be in pump bottles so you are not fumbling with the cap and/or spilling slippery shampoo in the shower or on the bathroom floor. You can also get body lotion in pump bottles. Same concept.

Although the WebRN article does not say so, a system to distinguish your shampoo from your lotion is also a good idea. For example, some people put one rubber band around one container and two around the other. Or, pick products with distinctive scents. Strawberry shampoo and lemon lotion, for example. Yes, there is a risk of ending up smelling like a fruit salad but that is better than “washing” your hair with body lotion!

So, my one pile is a little smaller now. There is so much good stuff out there! We’ll just keep looking at it for you. And if you have any topics you want to be covered, let us know. Otherwise, you might just keep getting what floats to the top of the pile!

Written August 19, 2018

Next: Life is Not Fair

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Where’s Your Hope?

Hello, there! I have been trying to get some things done today….I gave up as of about 30 seconds ago. Nothing is happening.

Wait…that’s a lie. Our Facebook group just hit 1,700 members! Congratulations to Lin and everyone who has worked to make that group a success. [Lin/Linda here: as of my typing, there are at 1,738.  The 38 were added this past week!]

And while congratulations are going out, we should also send one to my former retina specialist who I am ever hopeful will be my new research director, Carl Regillo. Dr. Regillo was named to the 100 most influential ophthalmologists in the world list. I find that pretty impressive.

And moving right along, researchers are expressing “cautious optimism” concerning regenerative medicine (read “stem cells”) treatments for AMD. Vavvas of Massachusetts Eye and Ear clarifies they are transplanting “differentiated cells…derived most often from iPS cells” that were themselves derived from stem cells.”

IPS cells are induced pluripotent stem cells. They can be induced directly from adult cells. These cells are “regressed” back to a state that will allow them to reproduce theoretically forever and also to develop into any one of every potential cells in the body. Perfect for “replacement parts”.

In other words, iPS cells avoid the ethical dilemmas that can be associated with embryonic stem cells.

Vavvas cautions it is still early days for regenerative medicine and all of the hype may be just that. Hype. Testimonials and anecdotal “evidence” are not scientific.

Massachusetts Eye and Ear is reported to be blazing new territory by combining regenerative medicine with neuroprotection approaches. The second of these approaches involves attempts to slow down cell death.

Vavvas goes on to once again caution against false hope.

The Cambridge English Dictionary defines false hope as putting your faith in something that might not be true. Fair enough. I would agree the crazy headlines after Coffey published were more than a little over the top. I would agree we have miles to go before we sleep, to paraphrase Robert Frost. I would contend, however, that something that might not be true still has the potential for being true. And that allows me to hold out hope for a regenerative medicine treatment if not a cure.

What it comes down to for me is, you have to have hope in something. Being told you have a condition for which there is no treatment and no cure is, well, disconcerting, to say the least.

So which basket do you put your eggs into? Which treatment are you betting on to actually do something substantive for us? Or have you decided there really is no hope?

To quote another great poet, Alfred Lord Tennyson, it is better to have loved and lost than to never to have loved at all. It just might be better to have false hope than have no hope.

Neal Burton in a 2017 Psychology Today article wrote that hope is an expression of confidence in life. It is the basis for virtues like patience, determination, and courage. Not bad. I can live with those outcomes.

So, yeah. I know we need to be cautious, but I still have hope. I still believe regenerative medicine is going to come through for us. Which potential treatment do you believe in?

Written August 15th, 2o18

Next: Coping: A Review

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Our Cub Reporter: Notes from an Awareness Program – Page 3

Continued from page 2.
New “treatment”!!

The FDA has approved implantable miniature telescopes that get put in your “good” eye during cataract surgery. (But there are trials now testing putting it in later). Your “bad” eye then is used for peripheral vision and there is a extensive visual training and rehabilitation required as you have to learn how to see all over again. This is covered by Medicare.

Wet AMD Treatment

PDT – cold laser – Visodyne – activated medication inside the blood vessels. No scars or burns caused by the laser.

ANTI-VEGF – the standard of care. He discussed the 4 available injections that are Medicare approved. Eyelea also works on platelet-derived growth factor.

Wet AMD Research!!

Researchers are looking at whether starting injections before you have a bleed in a patient’s “good dry eye” when one eye has gone wet.

Orange County Retina is involved in a lot of studies for new medications that include injections, oral, and drops. They were involved in the Lucentis and Eyelea trials. If you live near Orange County you may want to look into this practice.

Rajiv warned about being careful to avoid unregulated trials and non-physicians doing stem cell injections.

A lot of research is centered on drug delivery improvements. Eye Ontarisis – electricity shoves medication through a contact lens

Post delivery – Genentech – Refillable, sustained delivery implant that is refilled twice a year after initial surgery. Capsule is up under the eyelid. He was part of the trial. This was just approved.

Go to clinicaltrials.gov and look for local participants.

Dry AMD Research

Lamplizumab (Genentech) – the injections didn’t show slower progression (Sue’s Lamp stuff she had hoped to try)

APL – 2 (Apellis)

Go to clinicaltrials.gov and look for local participants.

Stem Cell Research

Stem Cell Trials are using three types of stem cells.

Cell-based therapy – Palucorcel – stem cells surgically placed under the retina. Encapsulated cell technology – capsule is sewn to the wall of the eye to release medication.

Opregen is using human Stem Cell RPE cells for dry AMD treatment injected under the retina.

Regenerative Patch Technology (also the name of company) – Using patch with stem cells on top of it to replace unhealthy cells. USC trial showing promising early results and Rajiv is also involved with this one.

Go to clinicaltrials.gov and look for local participants.

Continued on page 4

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