Category: Research

Intermediate or advanced (wet or geographic atrophy) in one eye/No AMD the other eye

Intermediate or advanced (wet or geographic atrophy) in one eye/No AMD the other eye

AREDS: showed reduction of risk of developing advanced AMD over 5 years.

Notes
  • Stages: In order to simplify the results of these studies, we have ‘stretched’ the stage assignments from how they were actually done in the studies.  For example, in AREDS, they looked at the lead/most advanced eye & assigned the participant that stage.  So someone with one eye at the intermediate stage & the other with no AMD, early AMD or intermediate AMD would be assigned the intermediate stage.  AREDS2 used a slightly different method.
  • Source of supplements: There are many ‘eye vitamins’ sold as AREDS or AREDS2 but they do not all have the exact ingredients that were a result of the extensive AREDS & AREDS2 research (see References section below for full study articles).
  • Importance of reading the labels: The ingredients & dosages from AREDS were antioxidants 400 IUs of Vitamin E, 500 mg of Vitamin C and 15 mg beta carotene.  Beta carotene was found to be linked to lung cancer in smokers so for that and other reasons, AREDS2 removed the beta carotene & used 10 mg Lutein and 2 mg Zeaxanthin.  The formulations from both studies included zinc (because of zinc, copper was also included), 80 mg in AREDS and both 80 mg and 25 mg zinc in AREDS2.   It was these exact ingredients that produced positive results (“showed reduction of risk  of developing advanced AMD”) so read the labels of any products carefully to make sure they match the study formulation as closely as possible.  There are 2 webpages in References below that compare selected products.
  • Warning about zinc: Several years ago, warnings were issued about the high dose of zinc in the study formulations (80mg). Those warnings were confirmed by 2018 research that found that 15% of patients with a specific combination of genetic risk variants nearly tripled their risk of developing wet AMD when treated with the AREDS formulation with 80mg zinc instead of a placebo.  For more information about genetic testing, see References below.

 

References

Go back to The Guide

Early AMD in one eye/no AMD the other eye

Early AMD in one eye/no AMD the other eye

There were not enough participants in AREDS to a generate a recommendation. Perhaps results of Awh, Zanke and Kustra (2017) below may apply but it has not yet been studied. The study found that those with a specific genetic makeup may be harmed by taking the antioxidants (no zinc). There were no participants with early AMD in AREDS2.  If your doctor has recommended that you take the supplement, see “Early AMD in both eyes” in The Guide.

References

Go back to The Guide

No AMD Both Eyes

No AMD Both Eyes

Studied in AREDS only (no participants without AMD were included in AREDS2), participants with this combination were put in a separate part of the clinical trial to study the effect of antioxidants on cataract formation where half got a placebo & half got the antioxidants only (no zinc). The antioxidants are Vitamin C, Vitamin E and Beta Carotene.  In 2017, AREDS data from the cataract part was studied by Awh, Zanke and Kustra (2017) and they concluded that taking these high-dose antioxidants may harm those with a specific genotype.  Because of that, the recommendation from study is to NOT take the AREDS or AREDS2 supplements if you do NOT have AMD.  For more information about genetic testing, see References below.

References

Go back to The Guide

I Am Bored

Saturday evening. I am bored. I do not want to do a cursed thing that is available to me. Games? No. TV? No. Cleaning? Bite your tongue!

I guess that means I write. I have no clue what I am going to write about. We will be surprised (shocked, appalled, bored to tears) together.

A very long time ago I wrote how it is possible to get newspapers and magazines read to you over the phone. It is called the NFB (National Federation of the Blind) Newsline. If you qualify for BARD, you will qualify for Newsline.

Anyway, according to a recent email, Newsline is expanding their offerings. You can now have the computer voice read you Ebony, Science Daily, Scientific America online and Hollywood Reporter. Definitely a varied group of new offerings.

Assuming Lin has already put the link in but if not, search Newsline in the archives. Info for signing up is in the old page.

Looking at more of my mail, specifically things from Healio, I see we are getting closer to being cyborgs. They have approved human testing on the Orion Cortical Implant. In fact the first patient received the device last month (massdevice.com article). The implant in the brain is supposed to pick up signals from a miniature TV camera mounted on glasses. The feed is wireless. Gets my sick little brain wondering what else it could possibly pick up. It might be a bit distressing to pick up random signals. Hmmmmm….

That is not for us, though. The invention that may turn us AMD folks into cyborgs is called The Prima implant. I also mentioned this some time ago. Now they have gotten approval to do feasibility studies on people who have vision loss from dry AMD.

The Prima sends signals from a glasses camera to an implant that is connected to the optic nerve. It has 378 electrodes. That sounds like a lot but I have the feeling the vision they will have with that will be pretty pixely. Oh well, it is a start.

You folks who use aflibercept (Eylea) to hold your wet AMD in check may want to check out that manufacturer as a possible investment opportunity. Regeneron posted nearly $1.5 billion income for 2017. Whoa, baby! That is a lot of eye shots.

Another one of my pet ideas again: keep in mind we have power. Why? Because we are the ones who are making it possible for companies to make money like that.

And another thing, Healio reported Regeneron posted a QUARTERLY costs of research and development at…ready?…$528 million. For the year, it was over $2 billion.

This is one company, people! Imagine how much money all of the companies in the world are throwing at finding solutions to our problems. How can you say nothing is being done? How can you say it is hopeless? There is no way they would be spending money like that on a lost cause. Bad economics, don’t ya know?

It is now 10 pm and I can go to bed. Don’t have to worry about entertaining myself any longer. Thanks for helping me get ‘unbored’! Night!☺

Written February 11th, 2018 Continue reading “I Am Bored”

Cool Things

Greeting! I decided to stay home today. Too much to do. So instead of doing housework or work work I am working on a page.? Hey, makes sense to me!

I was doing a little web browsing and came upon the site for the “American Association of Ophthalmology. Protecting Sight. Empowering Lives”. Nice motto. Established 1896. Fairly old for ‘the colonies’.

I was looking through the sight site ? and discovered the pages from the annual meeting in New Orleans. There, in living color, was my doc! Carl Regillo was program co-director for the retina section. How about that?

Ever play Six Degrees of Kevin Bacon? It is a silly game based on the theory of six degrees of separation. The theory is anyone can get to anyone else in six moves or less through associations. I used to be able to get to the president in four moves. I was friends with the father of the secretary of the state department of agriculture. He knew the federal secretary of agriculture. The federal head knew the president. The president was my fourth jump. Done in four moves!

Anyway, started to think how many moves it would take to certain people through Regillo. He cuts it down considerably! But that is not my point…

My point is: they are doing some cool things in ophthalmology!

For example? Well, do you remember I said it would not be long before they are using gene therapy with AMD? Boy, was I behind the curve! Things in that field are happening now!

The AAO stuff was in abstract form and pretty scientific. Allow me to go to the popular press and get my info? If I sit down and try to analyze the other stuff, that is all I will get done today!

BrightFocus and WebRN both ran pages on gene therapy for macular degeneration. The BrightFocus article highlighted a gene therapy called Retinostat. Retinostat is for wet AMD. It sounds as if the inserted gene programs the cells in the eye to produce anti-VEGF. Sort of like refitting a factory to produce a different product.

Retinostat is nct01678872 at clinicaltrials.gov. What is listed is a phase 1 study (safety and tolerability) and they are recruiting by invitation only.

The second wet AMD gene therapy possibility mentioned in BrightFocus is AAV-sFLT. This is also supposed to block VEGF. This study is nct01024998. It is active but not recruiting. That is also phase 1. At the end of the first year, gene alterations from AAV-sFLT were still blocking the production of VEGF. Bottom line may be fewer or even no shots!

And, as for usual, wet AMD advances seem to happen first and our third potential gene therapy is also for ‘youse guys’. Specifically it is REGENXBIO’s RGX-314. The number is nct03066258. It is phase 1 – once again – safety and tolerability and absolutely no promises. They are recruiting. Santa Barbara, Baltimore, Boston, Philadelphia, Memphis and Houston.

So, yes. There is progress there in gene therapy for wet AMD, too. Gene therapy is in its infancy and some people object. It is up to you to decide for yourself if you believe manipulating the very code that makes up who we are is moral or are we playing God. Not my call. If you are alright with it, they could have it for you in a few years. Good luck!

Written January 28th, 2018

Continue reading “Cool Things”

The Heat is On!

Technically I have a TON of work to do. I brought all sorts of stuff home from the office with good intentions. However, we took the pups to the vet, I satisfied a once-a-month contract I have, we got lunch out, I got a haircut, I took the puppygirls out to run, I went out to cross-country ski in the church field (okay, around in circles but you do what you can when you can’t drive), then I came in and vacuumed, swept and dusted. If it is alright with you, I am done!

Tomorrow is another day. With the things I did today done, I can better concentrate on my other stuff. Right? Hope so, because it really is a crapload of work! I did say no rest for the wicked before; right?

In the meantime, I just wanted to point out how well some other people have been working! Medscape reported that in November a team from Jerusalem and a team from Miami jointly reported great things about the stem cell research they have been doing for dry AMD and Stargardt’s. Their product had passed phases 1 and 2 of the clinical trial with flying colors and is now ready to roll into phase 3. What was really exciting was the report of visual improvement in 18 out of 26 patients.

Now mind you, there was no real control group and the results could be a fluke. However, their star lab rat showed an incredible 38 letter improvement in her treated eye with a loss of two letters in her untreated eye. Not too shabby.

Since Medscape named only the team leaders and not the product, I did a little backwards sleuthing and discovered the head Israeli researcher, Elat Banin, has been working with a product called OpRegen and that is what she presented at the American Academy of Ophthalmology meeting in November. The parent company is BioTime.

According to a press release from BioTime the stem cells are delivered through the subretinal space by “simple intraocular injection”. The cells are “xeno free” meaning there were no animal products used in their production. Immunosuppressants are required for three to four months.

More good news is OpRegen has been granted fast track status by the FDA.  Expedited reviews, etc., should lead to faster release.

Now for the good/bad news. The clinical trials.gov number is nct02286089 and they are recruiting! That is, they are recruiting in Israel and California, specifically Jerusalem, Petah Tikva, Rehovot and Tel Aviv as well as Los Angeles and San Francisco. Not sure what happened to the Bascom-Palmer, Miami, site but you could call and check it out. If you are not in any of those locations you are probably s.o.l. That is the bad news. [Lin/Linda here: ‘s.o.l.’ is short for ‘surely out of luck’! ::grin::]

If you know anyone with advanced, dry AMD who lives in Israel or California, give them a head’s up. They might want to try to become a lab rat.

And we in other areas? Remember this is not just a race between research and our failing eyesight. It is also a race among the drug companies. The one who brings in a viable product first, gets the BIG money. I suspect this news put a fire under more than a few. We can only profit from their singed bums!

The heat is on and great things are happening! This is a the best time in history to be going blind.

Written January 20th, 2018

Continue reading “The Heat is On!”

UPDATED: Are there eye drops instead of injections to treat wet AMD?

The short answer to that question: not yet.  There is a major problem in developing eye drops for AMD.  One article states it as “Ophthalmic drugs have traditionally been administered topically, which in general provides therapeutic levels to the anterior (front) chamber of the eye but not to the posterior (back) segment. Therefore, topical administration of drugs has been largely infeasible for posterior segment diseases such as AMD and diabetic macular oedema.  In contrast, intravitreous injection [for wet AMD] provides direct delivery to the posterior segment and allows therapeutic levels to be attained.”

Here are the studies so far (there is other research that I’m not including that is currently only being done with animals).  Keep in mind that there are four phases to clinical trials.  Click here for more information about clinical trials.

  • PAN-90806/Panoptica: topical Lucentis
    • clinicaltrials.gov Phase I completed
    • “A phase I/II trial of the next generation of the formulation is set to begin in the first and second quarters of 2017.” Click here for an article.
  • OHR-102 (originally “Squalamine”): squalamine has been shown to interrupt and reverse the process of angiogenesis; used in conjunction with Lucentis injections, goal is to reduce number of injections or eliminate them.
    • clinical trials phase III not recruiting subjects,  completed in mid-2019.
    • click here for an article.
    • Temporary suspension of clinical trial phase 2, not due to safety issues.  Going forward with phase III.  “Effectiveness: Unfortunately, Squalamine Eye Drops failed to decrease the average number of Lucentis injections required by the study participants. This was the primary goal of the clinical trial and the result was disappointing, both to researchers and to people with wet AMD, who were hoping that Squalamine Eye Drops could possibly reduce, or even eliminate, the need for eye injections.”
  • CPP: cell-penetrating peptide (CPP) can be used to deliver therapeutically relevant doses of ranibizumab (Lucentis) and bevacizumab (Avastin)
    • University of Birmingham, England
    • click here for an article.
    • “This is exciting for both patients and practitioners,” said Dr. Jayanth Sridhar, assistant professor of clinical ophthalmology at the Bascom Palmer Eye Institute. “But this was a preliminary study in animal eyes only. Further research must be undertaken in human subjects first to establish safety, and then to establish effectiveness. Still, this study offers at least a glimmer of hope that in the coming years we may see a topical drop option emerge to supplement or replace injections.”
  • OC-118: “solubilizing nanoparticle” technology
    • Article Jan. 6. 2018 says “This technology, the company hopes, can boost the drug’s ability to reach the front and the back of the eye — something that previous drugs haven’t achieved unless delivered via needle to the eye.” It is currently being looked at to treat Diabetic Macular Edema (DME). I couldn’t find anything to confirm or deny that it could be used to treat AMD.

Updated & verified 1/8/2018

Optimistic for 2018

TGIF. Thank God it’s Friday! Not that the weekend is going to give me much reprieve. I have exercise classes on Saturday and a party on Sunday not to mention puppy parenthood, housework and several reports to write.

There is no rest for the wicked. Not that I have been exactly lax. This just seems to be a life with a lot to do…and I like it. I like it!

Nice to see in Newsweek and the Daily Mail that being busy and stubborn lead to longevity. Those of us with a strong work ethic, pure cussiness and a need to be in charge seem to take the years a little more easily.

There is certainly going to be a lot to do this year. In 2018 I turn 65 and need to navigate Medicare and some sort of other insurance for my cradle-robbed husband. My calculations indicate I am losing over $6,000 a year by still working at the school. My pension would pay a lot more. That and my ever failing eyesight suggest retirement from there and working full-time at the psychology practice may be the way to go. I still have some things to check out so we will see. Keep you posted.

We have a big project coming up at the office. We get to be involved in a statewide training for DBT this Spring. I have several ideas about what I want to do with that. I have discovered I really like to teach and I believe DBT is needed by our younger folks. I would love to introduce DBT in the schools.

Like I said, lots to do and I am optimistic about my opportunities. And that includes my opportunities for my vision.

Did you see Luxterna gene therapy is now on the market? Luxterna is $850,000 for a treatment! That is a hell of a lot of bake sales but I would expect many if not most communities would work to buy vision for some little guy or girl.

Remember Luxerna works by modifying the gene RPE65. RPE65 ‘recharges’ chemicals in the retinal pigment epithelial cells so they can still participate in the visual cycle. If they can reprogram RPEs to do that, how much longer before they can modify them for our diseases?

I have it on pretty good authority the APL-2 studies launch again this calendar year. That’s exciting. What is also exciting is I believe the Astellas Pharma stem cell trials will get going this year as well.

Progress is being made. Lin shared a recent article on how they are increasing the success rate for transplanted RPE stem cells.  Optimally RPE cells are to line up and form a single, functional layer of cells only one cell thick. This is everyone nose to tail, all facing in the same direction.

In order to do this the RPEs have to have well-developed primary cilia on them. Primary cilia are little, hairlike things that generally serve as the sense organs of the cell. Lab grown stem cells often don’t have the best cilia on them. When they line up, things can get a little wonky.

Kapil Bharti and the folks at the National Institute of Health have discovered a drug that helps RPE cells grow beautiful cilia. Beautiful cilia cause the RPEs to line up in pretty lines and the results of the transplant are more successful. Ta da!

So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.

Best wishes for 2018.

Written January 5, 2018 Continue reading “Optimistic for 2018”

My New Career?

Not to belabor a point, but today did start as a rather poopy day. We had our first snow overnight. Just a couple of inches but it was the puppygirls’ first snow. My theory is this: when they went out and squatted to poop, they got cold, wet bottoms. Go inside and poop? No cold, wet bottom. Problem solved!

Of course, since my husband was first on scene and got to clean it up, he was NOT a happy camper. Not a good start to the day.

Then there was the snow itself. Getting to my eye appointment is a 90 mile trip one way. My husband does not like city driving and he does not like driving in the snow. Once more he was not a happy camper.

It is hard to explain to some people why we have been dutifully driving 90 miles one way, every six months just to be told my eyes are worse. “Please pay your copay.” For those kind of results, I could go five miles down the road!

However, it is all part of a master plan. I have real problems with defeat. Real problem being told there is no answer. If you cannot supply me with an answer, I will find someone who can!

So here I am, running to see Regillo every six months for the past two years….and I think I am getting closer!

First the good news/bad news. Or, in this case, bad news/good news. Although I find it hard to believe, I have fallen down below 20/400 acuity. Bizarre because I don’t feel blind and don’t think I function as a blind woman.. After all, I got the “you don’t look blind!” routine just last month.

However, the good news on that is my vision is now so bad, I can satisfy the truly awful vision requirement for the Astellas’ study that is supposed to launch in March! Regillo referred me again. Is this time four or time five? I have sincerely lost count. [Lin/Linda: I put the details to that study in Sue’s page The Waiting Game.]

He has also put me on the list for APL-2 which is supposed to go into phase 3 clinicals sometime in 2018. He started to offer me “something else” when we were talking about lamp stuff (which is apparently very dead in the water) and I surprised him by knowing exactly where he was going. Working on being memorable. I want my name at the top of the list. [Lin/Linda: Sue wrote about APL-2 in her page My Friend in Manila?]

Also thinking I may be getting closer because I got a new test today. They ran me on the autofluorescence test. This test uses a very bright light. When the image is examined, the areas of the macula that are already dead are black and the areas that are in distress shine. My eye probably lit up like a Christmas tree. If that gets me into a study and gets this stuff stopped? Good.

So, that is where we are. I got a new test. I chose to be hopeful it means they want more information for my new career as a lab rat! Regillo generally seemed positive. Maybe I will be going to Philadelphia.

Written Dec. 14th, 2017 Continue reading “My New Career?”

Home Again

Greetings! Home again and it seems as if we were never gone. That nearly two weeks just flew! The only way I can be sure we were gone is I am freezing! There is about a 40 degree difference in temperature between the Caribbean and home. If I ever disappear you are all welcome to come looking for me. You can start with Costa Rica.?

Because a WiFi connection was something like 79 cents per minute from the ship, I have been very out of touch. I just did a little research and it appears the second half of the Lampalizumab study also failed in phase 3. That was the Chroma study. Spectri was the failure announced back in September. Or maybe it was the other way around. Anyway, it appears they both failed to meet the desired endpoint in the study. In an article in Healio.com Jeffrey Heier said they have collected a great deal of information they still have to analyze. They are hoping to be able to use this information to better understand geographic atrophy and also to develop new ways of fighting it.

Personally I am still perplexed as to why lampalizumab did so incredibly well in phase 2 trials but failed in phase 3. According to what I have read three-quarters of treatments that pass phase 2 pass phase 3 with no problems. Tis a mystery. Maybe the folks at Genetech can find the answer to that one.

I have already written a bit on BEST disease. That is the AMD disease that is not really AMD. I know at least one of our readers has BEST. October 25th News Medical published the results of a “disease in a dish” study done at Columbia and the University of Rochester. They took skin cells from people with BEST disease and regressed them to become pluripotent stem cells. They then took these stem cells and ‘nudged’ them into becoming retinal pigment epithelial cells.

As expected, these RPE cells growing in a dish (meaning they had no outside influences on them) did the same ‘bad things’ that happen in an eye with BEST disease. Once again this is a strong indication the problem is in the genetic coding.

So far this is old news, but the rest of it is not. The researchers found they could actually reverse early damage through gene therapy. They introduce healthy copies of the faulty gene using viral vectors. Once their codes were corrected, the cells started to recover and to perform like healthy RPEs.

Ready for prime time? Not hardly. This research is still happening in a petri dish. However, the rate at which this sort of research is progressing is startling and if I had to take a shot in the dark, I would say clinical trials may only be a few years away.

Hang in there and stay optimistic. We are making progress daily. Me? I have to make progress on vacation laundry!

written November 11th, 2017 Continue reading “Home Again”

Hard to Know

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

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

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

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

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

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

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

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

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

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

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

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

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

Puzzle Pieces

Waiting for the shuttle to get to the ship. My husband made the comment how rough it is being stuck at an out-of-the-way hotel with no car. I welcomed him to my world.

Having been in two, different hotel rooms in the past 48 hours, I have made a discovery: spatial memory does work. I have yet to run into anything on my way to the bathroom in the middle of the night.

Secondary lesson on that is to trust yourself. We learn our surroundings rather quickly. Pretty much pitch darkness in a hotel room yields less information than the sight we will eventually have left will yield. Put down a memory of your space and use that memory to navigate.

Never really thought about using spatial memory until now. Never really thought how it can enhance one’s ability to move around in the world. Now I realize it has always been there for me. Now I am starting to realize its value.

As I have been hanging out here, my new edition of Healio.com newsletter arrived in my email. The one article is possibly not the best of news. They have discovered a correlation between Posterior Vitreous Detachment (PVD) and both wet and dry forms of AMD. Partial detachment happens more often in patients with wet AMD but total detachment seems to happen more often in those with the dry form.

Posterior Vitreous Detachment happens when the vitreous shrinks and pulls away from the retina. We have talked about macular holes before. They occur when there is an adhesion and that tugs on the macula. Retinal detachment can occur when the vitreous shrinks. Floaters are more common.

The authors of the study suggested there might be something ‘different’ about the vitreous retinal interface in people with AMD as compared to those of us who do not develop the disorder. They suggest this is just one more path that needs to be explored.

Which I guess can be looked at two ways. Some of us look at one more thing that is wrong with our eyes and despair. Legitimate point. Our eyes are a mess, true, but there is another way to look at it. Anyone notice how eye researchers all over the world are ‘feeding off’ of one another? For every researcher who finds a new piece of the puzzle, there is another one who can take that piece and pop it into the part of the puzzle they are working on.

Anyone ever do jigsaw puzzles? Yep. Every time we find a piece we realize even more fully our puzzle is not 100 pieces but more like 1000 pieces. But often when we find that piece on the floor or in the chair cushion the guy across the table says “hand that here. I think I have a place for that.”

Just one more piece of the puzzle discovered. They will all eventually fix somewhere

Written October 31st, 2017

Next: Postcard from the Cruise Part 1

Home

Before I Go

Waiting a bit before I bathe and get clean clothes on to start the trip. Hate to start out in half dirty duds. Not to mention a half dirty me!

Just got another phishing email. Jeez. I never even knew I had an account in that bank! And to top it off, their noun/verb agreement was wrong. Grammar and usage as fraud detection. One more reason to pay attention in language arts.

Moving on…

Living Well With Low Vision had a recent post on subretinal implants for dry AMD. We are back to Steve Austin again. Remember the Bionic Man? “We can rebuild him? We have the technology?” Yep. Now we are featuring the Bionic Senior Citizen.

We have talked about the Argus 2. That doesn’t appear as if it is ‘for us’ just yet because the quality of the image is poor. Sort of falls under the heading “something is better than nothing”. If you got nothing, it is great. Those of us who visually “got something” might be best to wait some on that.

The new one is called PRIMA by Pixium Vision and it is being developed by the French. Now we are talking early days on this. Just coming out of animal trials so don’t get too excited just yet.

PRIMA is a tiny, wireless subretinal implant that could speed prosthetic vision up to the speed of video. The French team, according to Pixium Vision CEO Khalid Ishaque, built on a concept that initially came from a team at Stanford. Real cross cultural and multinational initiative. Probably a political statement there but I won’t get into that.

PRIMA goes into phase 1 trials sometime in the next couple of months in France. They are starting with five patients with advanced geographic atrophy.

Concurrently, Pixium Vision is petitioning the FDA to try to get U.S. feasibility studies up and running. That could take a while but it is in the works. U.K.? Sorry guys. No clue. Anyone know the reciprocity laws between France and Great Britain when it comes to medical technology and research?

Adding one more, short article review here. They are also experimenting with using lasers to ‘zap’ floaters. The laser they are using is the YAG laser. Neodymium-doped yttrium aluminum garnet is a crystal. Just in case you wanted to know. No? OK. I won’t go into that.

While this type of laser has had multiple uses in ophthalmology up to this point, they are just beginning to use it to play Asteroid Blaster with floaters. Comments published in the Medscape article suggest great care be taken in using YAG lasers for this purpose. More and better organized clinical trials are needed.

That is pretty much it for now. I will be ‘WiFi enabled’ for two more days. After that, I will be shipboard. Online time is obscenely expensive at sea so I will actually have to shut up for awhile. Do you think I can stand it?  [Lin/Linda: anyone want to bet on this? ::grin::]

Written October 29th, 2017 Continue reading “Before I Go”

Three Types of Wet AMD

Well, the kitchen floor is now mopped. Took a deep breath and went back into the housekeeping fray after that last page. How do people get motivated for that sort of thing every day?

With a nod to our ‘wet’ readers, I am going to tackle an article on how to image different types of neovascularization. Not sure I am going to get very far because I never even ‘knew’ there were different types of choroidal neovascularization.

First off, to the article talking about imaging retinal angiomatous proliferation. Huh? Back to EyeWiki.

Choroidal neovascularization starts in the choroid. It erodes through the RPEs and results in chorioretinal anastomosis. Anastomosis? Lovely. Anastomosis is the connection of two vessels that were not previously connected. Sort of like a shunt. Got it? Good; moving on.

Retinal angiomatous proliferation is a process that happens ‘backwards’. It starts in the retina and progresses into the subretinal areas. It eventually connects the retina and choroid by forming an anastomosis. That is a connection where there is not supposed to be one. See previous paragraph.

Retinal angiogenesis proliferation has been called type 3 neovascularization. This begs the question: what are types 1 and 2? Type 3 is rare with 10% to 20% of people with wet AMD having this type of disease. This may be a good thing because the article lists all sorts of complications that are common in type 3 but rare in the other two types.

So now I have to do a little more digging and find neovascularization types 1 and 2. Back to EyeWiki where I discovered this: In type 1 the new veins are below the RPE layer. In type 2 the neovascularization passes through the RPE layer and compromises the neurosensory retina. That means it gets far enough to directly mess with the photoreceptors. Type 1 is hidden and type 2 is classic.

As far as treatment is concerned, ResearchGate.net (7/15) suggests type 1 can be treatment resistant. My guess – please note this is a guess – would be this is because type 1 is ‘buried’ in lower regions of the eye and anti-VEGF may have a harder time getting to it. That buried nature of type 1 – and another article – makes me think what we are talking about here is the occult type. Saw that classification before. Just needed to make the connection. Dawn does occasionally breaks over Marblehead.

Anyway, anti-VEGF treatments are still first choice although I am starting to see references to photodynamic therapy (“cold laser”) and even surgery. Maybe we should look into that, too.

Type 2 is the classic type. My reading suggests ‘shots’ are the treatment of choice there.

And as far as type 3 is concerned, it appears that in spite of the complications reported, type 3 can be treated rather successfully. Anti-VEGF injections do the trick, sometimes even on the first try.

So there you are the three types of wet AMD. Learn something new everyday.

written October 24th, 2017 Continue reading “Three Types of Wet AMD”

An Exercise a Day

Hey. It is Sunday. I have changed bedding, mopped the bathroom floor, done dishes, done laundry and written most of a psych report (why don’t people look on the backs of checklists?). I have HAD IT. No mas. Break time. The sun is shining. It is around 75 degrees outside (screwy weather) and I am heading for the deck.

Sunday has become my work around the house day. Monday it is back to the real world and if I want to get anything done at home, it has to be done Sunday.

Heaven help me when I am no longer working and don’t have the press of deadlines. Nothing will ever get done!

Feeling good about getting a pup. We picked the lively and inquisitive one. I know she may be more of a handful than any of her sisters but I need a walking buddy. I have been “going to walk the dog” for more than 60 years and going to walk by myself feels wrong.

Bringing me to the promised topic, as well as the promised nagging ?. Exercising is great for avoiding depression!

We have talked about the crazy percent of older people who are depressed and the even crazier percent of older VIPs who are depressed.

Right now many of us are not going to improve our visual standing anytime in the near future. Gotta live with that. That leaves us with fighting the second dragon, depression.

Our friends whom we have not met yet in Nord-Trondelag county Norway have been participating in a huge, as in HUGE, longitudinal health study that started in 1984. One of the things they were measuring was the relationship between exercise and depression. To begin with they found an exercise a day keeps the psychiatrist away. Those who did not exercise at the start of the study were 44% more likely to develop depression than exercisers. Total amount of exercise and depression were negatively correlated (more exercise went with less depression). However, they also found as little as one hour of exercise a WEEK reduced chances of depression by 12%!

Similar studies in Sweden and the United Kingdom found similar results. The benefits of exercise were seen in everyone, including older folks, and the intensity of the exercise did not matter. Easy was OK. Small doses were OK. The idea was to move.

Of course – pushing my luck with some of you; I know – aerobic exercise and focused attention meditation twice a week has been found to improve depression in two months or less. That research comes out of Rutgers. The Rutgers study sequenced the two, one after the other, but it is possible to get both exercise and focused attention in one activity. I am talking about the Eastern practices such as yoga and tai chi.

OK. End of lecture. Just hoping to find one convert out there somewhere. It really does work. Any brave soul out there who wants to try it? All you have to lose is your depression.

October 22nd, 2017 Continue reading “An Exercise a Day”

Don’t Believe Everything You Read

Friday evening. I have things I should do. Constructive things like cleaning the bathroom or writIng a report. Or studying the book for the home colon screening test.

Yep. Back to poop. I really need to ‘study’ for that ‘test’. Of course, my husband told me he took it and aced it. All the answers are number two!?

So much for the potty jokes, but I really could not resist sharing that one!

So, yeah. Things I should do but I am not doing them. When I got home I flopped down and watched Hawaii Five O on my iPad. It is great because of the relative distance thing. I can actually see the screen!

Then I checked my email and Lin had sent me an article about how yoga inversions are bad for us with AMD. Alrightee then. Let me move off from there.

After I scanned the article, I went to Google Scholar. I searched about six pages of references for yoga and macular degeneration. I did not find a single description of an article that sounded like it found yoga inversions bad for AMD. Not one. In fact, most of the articles I scanned sounded as if they were touting yoga as a great thing for the visually impaired.

The reason I went to Google Scholar? Because it helps you find the research. Everyone has an opinion but unless he can back it up with facts, don’t believe him! An opinion is no more than that: an opinion. That and $1.25 will get you a diet Pepsi. (I don’t drink coffee and have no clue how much a cup of joe really costs.)

The articles I saw that said don’t do inversions were on the general web and by the same person. He offered no substantiating data. His evidence, if any, appeared to be anecdotal. Anecdotal evidence is great for helping us generate some working hypotheses but to declare it as true, we need experimental proof.

I guess the lesson I am trying to impart is don’t believe everything you read in the papers. There are all sorts of opinions and theories out there. Some of them have a lot of face validity and seem as if they are true. That doesn’t mean they succeed when they are tested.

Once again, we try very hard to back up what we say here with research. If I go off the reservation in my speculations, I will tell you. “I don’t have a clue what I am talking about. Unsubstantiated opinion here!” One should never pass off her opinions as gospel.

Speaking for myself and myself alone, I am not quitting yoga even with inversions. There is no substantive evidence offered for the claims. I love yoga. I have improved strength, flexibility, endurance and even balance (eternally balance challenged; that’s me!) I love the challenges. I love the socialization. And that is that.

And now, I have found another use for my magnifier reader: DIY home surgery! There is a splinter in my foot. Can’t see it naked eye but on 9x it is a tree trunk. Nurse! Tweezers!

Written October 21, 2017 Continue reading “Don’t Believe Everything You Read”

Drink Your Fluids

Hello. Doing the bachelor chick thing this evening. I ate a BIG piece of Boston cream pie and then lounged in a hot tub while watching NCIS on my iPad – strategically held outside the tub, of course. I hate drowning good electronics. (I have already killed three cell phones by drowning…one in diet Pepsi!)

I thought of taking the cake and the tablet and going to curl up in bed but then I thought that might be too decadent.

Hubby is spending the night with his mother. My mother in law does not like to drink. Water, etc. Not alcohol. She does not like to have to walk to the potty. When she gets dehydrated it messes with her system and she ends up in the emergency room half of the night.

Moral of the story: drink your fluids! No one likes to motor around when they cannot see well. It is scary, but dehydration is even scarier.

Never gave it much thought, but apparently the people at Hydration for Health think about it a lot. I found their short article to be very informative. For example, I never realized dehydration is a huge problem in the elderly. Older bodies don’t hold as much fluid as younger ones. We also don’t recognize when we need to drink as well as younger people. Dehydration is one of the top ten diagnoses of hospitalized seniors. Dehydration is associated with cognitive impairment and constipation, not to mention death.

Mommy-in-law does not have a vision impairment but she has a mobility impairment and, as I said, does not like to take herself to the potty. Ergo, she drinks very little. I am thinking some of you are the same. Maneuvering through the house with low vision – and maybe a mobility problem – may seem like more trouble than it is worth. If you don’t drink, you don’t pee. Problem solved? Only if you want to get a heck of a lot more debilitated, it is!

So, I get an evening to play bachelor chick courtesy of the mother-in-law. She got to spend half of last night in the emergency room. My husband gets to sleep on her couch tonight. All because she won’t drink her fluids. Seems sort of silly to me. I hope you guys are playing it smarter and drinking enough. Even if it means a dozen trips a day to the potty!

And since this is supposed to be an AMD blog sort of thing…I heard from my contact at the research facility. Janssen has put phase 2 of their stem cell research on hold. Why? Your guess is as good as ours. Astellas is supposed to move on their stalled, stem cell research in the early Spring. They are going to be recruiting from the subject pool starting with the people with the worst vision. There is the answer to my question of how to get on the A list. I have to go just about truly blind to qualify. No thank you. I can wait to qualify if that is what they want.

That is about it for now. Hang in there and drink your fluids!

written October 19th, 2017 Continue reading “Drink Your Fluids”

Progress Daily

I really cannot win with this transportation business. Now they are on a string of late pick-ups and I am waltzing in 45 minutes after everyone else. Grrrrrrrrrr!

Oh well, can’t fix it. Time to start a page…..and as soon as I am into it, they will show up. Same concept as going to the bathroom in the restaurant to ‘make’ your meal arrive faster.  Aha! Recognition! You have done that, too!

PRELUDE, the study, is NCT02659098. I checked and this is the same study I put my name in for last year. I just shot off a message to my research contact and asked her to make sure my ‘registration’ is still good. I am nothing if I am not persistent. Sad to say it is one of my better traits (oh no!)

There are actually two, main measurable outcomes they are interested in. There are the efficacy of the delivery system and best corrected acuity after administration of the stem cells. In the clinicaltrials.gov post they refer to the stem cells as CNTO 2476. In other literature they named the stem cells Palucorcel.  I guess it is better than George (with apologies to the royal family. I have never liked the name George, although the little guy is a cutie!) Of course, Palucorcel does not exactly fall trippingly off the tongue.

Anyway, according to a one page write-up by Jessica Lynch, previous attempts to circumvent the vitreous and go in subretinally caused too many problems. They are, as I had been led to believe previously, trying to go around to the macula using the suprachoroidal space as their passage. (Anyone ever see Fantastic Voyage? I keep thinking how incredible it would be to jump in my microscopic submarine and motor through the suprachoroidal space!) After preclinical trials with mini pigs were successful, they launched into prime time with a phase 1 trial with people. As I said, they are now recruiting for phase 2. [Sue wrote about subretinal and suprachoroidal are in the previous page: Secret Passages in the Eyeball

Looking at the additional data on clinical trials.gov I discovered there are secondary outcomes for the study. They will be looking at quality of life and reading speed as well as whether the stem cell transplants slow or even stop the growth of the geographic atrophy. They are also looking at how many people convert to wet AMD. It sounds as if this study would be a long term commitment for the ‘lab rats’ chosen.

Going back to the Medscape article about phase 1, I discovered they had pretty good success threading through the space and the transplanted cells grew and started to function.

Cell placement was important. They used the microperimetry to figure out what retinal areas the subjects were using for eccentric viewing. Too close and that could be messed up. Cell placement other places was better.

Results? The subjects had some improvement in vision. That was SOME. Before you get too excited, remember this is RPE replacement. RPEs do not see. They support your photoreceptors. Some of the photoreceptors that are at death’s door may come back but the dead ones stay dead.

I did run off the journal write-up on phase 1 and I promise to tackle it and see if there were any other cool findings. Later. Right now I have laundry to sort. Maybe listen to an NCIS episode. It is now playing all the way through on my tablet!  What can I say? It really is the little things.

Progress daily, guys. Progress daily. We will get there.

written October 17th, 2017 Continue reading “Progress Daily”

Our Turn is Coming

Happy Monday! Waiting for the van again so forgive me if I run off abruptly.

Back to the pink of health. I revised my evaluation and decided it was food poisoning….again?!?! My dining companion ate her leftovers and also got sick as the proverbial dog.

I was well enough yesterday to accept an invitation to go kayaking. Said if before, say it again, weird weather. There was some guy jet skiing on October 16th! Anyway, it was fantastic to be on the river. Warm breeze. Birds calling. Fishermen shouting greetings across the water. Kids on the bank asking me if it were nice out there. Yeah. It was. Really nice.

To business! I promised you RPE65. The Genetic Home Reference tells us RPE65 is also called retinoid isomerhydrolase. Yeah, whatever. RPE65. RPE65 is responsible for providing instructions for a protein we need to see. It is, obviously, part of the RPE layer.

As I said last time, RPE65 is essential in the visual cycle. Light changes a special molecule called 11-cis into a different substance. Since it is no longer any good for changing light into electricity in its new form, it has to be ‘recharged’ so it can go back to work. That is the job of RPE65.

With me so far?

Failure to convert the end product of the reaction – referred to as all-trans-retinal – leads to a build-up of said all-trans retinal as a waste product and a toxin. In my terminology, it is part of the eye poop. Your visual cycle also stops working. Not good.

Now, I am not saying we AMD folks have problems with faulty RPE65 genes. (Although we might. I am only a dabbler in the field.) Those mutations are found in diseases like Leber congenital amaurosis (LCA) and retinitis pigmentosa (RP). What I am saying is every breakthrough in one aspect of vision research might lead to breakthroughs in other areas and – drum roll please! – there has been a breakthrough!

Not all that far away from me, in the City of Brotherly Love, also known to us country folk as ‘Filthydelphia’, Philadelphia to all you other folks, they have found a way to ‘reprogram’ faulty RPE65 genes using gene therapy. Philadelphia is on a roll because this is the second gene therapy its researchers have had recommended for approval. That is the second of two, mind you, EVER recommended for approval by the FDA. Philly researchers have gotten them both. One more and they will have a hat trick! (Go, Flyers!….OK, so their decades were the 1970s, ’80s and ’90s, but it could happen again.)

The first gene therapy recommended for approval was for leukemia. The visual cycle gene therapy is called Luxerna. It is going to be offered to children with early onset blindness in a bid to keep their photoreceptors functional. It has a very high success rate and is still working in phase 1 subjects from four years ago! [click here for an article that talks about this in more detail.]

So what happens now? Luxerna has been cleared to take the final hurdles. According to FDA.gov there are three more steps in a 12 step process. These steps are as follows: review of labeling information, inspection of manufacturing sites, APPROVAL.

Brave New World. Stay tuned. Our turn is coming.

written October 16th, 2017 Continue reading “Our Turn is Coming”

Secret Passages in the Eyeball

Back again. Chatty sort, ain’t I? ? I really thought I was done for awhile but I keep finding things; ya know? If (should I even use the word ‘if’?) you are tired of hearing me chatter, please write a page! We are anxious for more offerings. [Lin/Linda: if you haven’t read the pages by our guest authors, click here to see what we are talking about.]

Back to the topic at hand (I am not only chatty, but I go off on tangents, a lot of tangents??☝ ) the most recent thing to land in my inbox is a Medscape article Lin sent me. We are back to the stem cell research!

This article uses a lot of the concepts and vocabulary we have introduced over the months. I will review as we go along – I don’t remember it all myself! – and Lin might help us out with some links to previous pages. Pretty please and thank you.  [I think the best place to learn about stem cells is a short YouTube video.   Also, check out Sue’s early page Research.]

I am signed up for a Janssen Pharmaceutical study with stem cells. Guess who did this study? Do you ever feel LEFT OUT? Once again, I would love to know how to get on the A list for these things. Not sure all the places the study happened, though. One place was Kentucky. Maybe I was a ‘geographic undesirable’? I will have to do a little research after hip hop. (Some things do take precedence!?)

OK. Here we go. I looked up PRELUDE, etc and got routed to Clinical trials.gov. It is only going into phase 2 but the good news is they are recruiting. The better news is they are recruiting at Mid Atlantic Retina, Regillo’s place. Now I am getting stoked. “Watson!…The game is afoot!”

Shoot off an email later and get ready to accost Regillo when I see him in December. One other person who is only starting to realize the depths of my tenacity! (Cue Vincent Price laughter!)

OK. Enough nonsense….for now?. From the looks of things, PRELUDE was a study checking, for at least one thing, the feasibility of a delivery system. If you recall, we talked about ways of delivering stem cells to the back of the eye where they belong before. No just shooting them into the vitreous fluid where they roll around like loose cannon balls and end up who knows where. No, no, no! They must be placed. The way they are placed is to thread them through the subretinal space.

Now I am thinking the suprachoroidal space and the subretinal space are the same thing but I really don’t know. [The title of the article I linked to above is “Subretinal Delivery of Cells via the Suprachoroidal Space: Janssen Trial”.] How many ‘secret passages’ can an eyeball have? Be that as it may, the whole idea is to snake through this space (or spaces?) and get to the back of the eyeball without violating the integrity of the vitreous and opening it to infection.

The progress of the implanted cells in this study was checked with microperimetry. This appears to be an up and coming imagining technique we also talked about. It is a technique that tests which parts of the retina are working and how well they are actually working.

Which brings me to my word limit and bedtime. I have been to hip hop and back and need to take a bath and get ready for bed.

I did find what I think is the original journal article for this as well as the clinicaltrials.gov listing. I will follow up….tomorrow.

written October 16th, 2017 Continue reading “Secret Passages in the Eyeball”

Eye Poop Reduction

Looking for information on therapies that slow the vision cycle. Got all sorts of things on slowing traffic for safer cycling.

While I am all for fewer car/bicycle accidents, that is not exactly what I had in mind!

Back to Wikipedia, I discovered the visual cycle is the process through which light is transformed into electrical signals. If you have a penchant for chemistry, I refer you to the Wikipedia article. Social scientist here! As far as I am concerned…then there is magic!

Part of this magic includes having three different types of cone cells that respond to three, different wavelengths of light. By taking stock of the strength and blending of the stimuli from these three, types of cone cells, we are able to see color! Cool! Although my guess would have been the primary colors, the colors they detect are actually red, blue and green. Why? Dunno. Magic.

But back on track, visual cycle…

Since the job of RPEs is not only to feed the photoreceptors but also to clean up after them, RPEs have to be able to tolerate a lot of…uh, poop. (Gee, maybe I am just a big RPE! I feel like I deal with that stuff all the time!) When there is too much poop for them to handle, we get, among other problems, drusen.

Janet Sparrow in Therapy for Macular Degeneration: Insight from Acne (catchy title?) said “it is the responsibility of the RPE to internalize the membranous debris discharged daily by the photoreceptor cell.” In other words, they eat eye poop. Unfortunately, some of the molecules in the poop are toxic (as if eating eye poop was not bad enough) and not at all good for the RPEs or surrounding cells.

The theory goes something like this: Less eye poop would make life easier for the RPEs. While we cannot get rid of all the eye poop – after all it is a byproduct of what we want: sight – maybe we can reduce the volume of how much poop we actually have to deal with. If we slow down the chemical processes involved in sight maybe we can produce less poop and thus see for a longer period of time.

They are checking out that theory right now. Foundation Fighting Blindness (FFB) advertised for subjects for a phase 2 (proof of concept) clinical trial of ACU-4429, a “visual cycle modulator”. For our purposes, read “eye poop reduction strategy”.

FFB also published a one page blurb about Fenretinide. Fenretinide has successfully completed phase 2 clinical trials and is on the way to phase 3. They are hopeful it will slow down the visual cycle in those with dry AMD. The slowing should lead to fewer lesions in dry AMD and fewer cases of wet AMD.

Oh, and that chemistry I referred to earlier? I might actually have to understand some of it. Oy. In the visual cycle there is a pigment-y sort of thing called 11-cis. Helping the light signal along its way to become sight causes a chemical change in the 11-cis. In order to get changed back to its original form so it can do its job again and not contribute to the eye poop problem, 11-cis needs help from several molecules, one of which is REP65. REP65. Remember that name. It may be an up-and comer.

written October 14th, 2017 Continue reading “Eye Poop Reduction”

Maybe They Have Something

Good afternoon! It was a busy morning. My husband had to take the car for service so he dropped me off at the hospital for a shoulder x-ray and routine blood work. My shoulder pain is little better.

You would think I could just continue with up dogs, down dogs, planks, side planks and all those other yoga moves with no negative effects, but nooooo, my shoulder is really sore. It might have something to do with my not being as young as I used to be, but I doubt it.?

Then I walked down to get a haircut and Pizza Hut buffet lunch. Picked up by hubby. Grocery store. This year’s photos to the camera store for display. Home.

I have cleaning to do. I have a report to write. Oh, well. I have an OBLIGATION to our website!

At the end of last year Lin did a page on topical treatment for wet AMD. That means eye drops instead of shots. One of the ones she talked about was Squalamine. At that time Squalamine had failed to satisfy the efficacy standard laid out and the trials had been terminated.

Squalamine had failed to reduce the number of shots needed to keep crazy, blood vessel growth at bay. However, there were some secondary goals that were reached. According to the January 29, 2017 VisionAware, there were positive effects on acuity. This was especially true in people with a specific type of lesion. 31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!

According to healio.com a classic lesion in wet AMD has well-demarcated hyperfluorescence in the early part of the test and progressive leakage later on. It is not to be confused with occult or combined lesions.

Ohl Pharmaceuticals decided in February, 2017 to take the 200 people already enrolled and start in on phase 3 trials. In April Ohl announced it was amending the timelines of the study so there could be results late this year or early 2018. They also amended their goal to be an increase in visual acuity as opposed to a reduction in shots needed.

Now, I am wandering into the area of unsubstantiated speculation here, so don’t take what I say as gospel. OK ? OK. The April 10th press release alluded to the research being funded until early 2018. To quote: “Following the close of financing today we are funded until 2018 including completion of our ongoing clinical trial and data readout by the end of 2017 or early 2018.” Now if that were me and I were getting positive results, I would want to show off those results quickly and improve investments and other funding. If I had squat, I would stall and plead for just a little more time and MONEY.

In other words, I think they have something.

Another reason I think they have something? The press release said they were working with the patients who had “the greatest potential to benefit from Squalamine combined therapy”. In other words, they stacked the deck. (In my opinion, of course.)

Anticipating they rock the phase 3 study AND the FDA gives approval to ‘go live’ in a reasonable amount of time, a combination Squalamine/Lucentis treatment could be available in 2018. Cool. We are on our way.

Written October 9th, 2017 Continue reading “Maybe They Have Something”

Important Cells

You would think that after saying I was running out of ideas, I would have the good grace to actually run out of ideas and shut up. You should be so lucky!? [Lin/Linda: =I= should be so lucky! ::grin::]

A comment was made suggesting we may have fostered some misinformation. We have stressed the idea of retinal pigment epithelial (RPEs) cells supporting the photoreceptors in the macula so much we may have given some people the impression the RPEs are only under the macula. This is not true. RPEs are under all of the photoreceptors and support all vision, not just central vision.

Once again my very erudite source, Wikipedia (I did print out another article but it is long and involved and I can probably get three or four pages out of it. Do you really want that?) reports the RPE layer was first discovered back in the late 1700s, early 1800s. It was noted to be black in color in many animals but brown in humans. This is because this single layer of hexagonal shaped cells is chock full of – all together now! – pigment. The RPE layer wraps around the back of the eye and ends practically at the iris.

We have talked about a couple of the functions of the RPEs. They are there to feed and clean up after the prima donna photoreceptors – both central cones and more peripheral rods – that apparently cannot do things for themselves.

Something I had not heard of before but makes sense is RPEs, as the conduit from the bloodstream to the interior of the eye, are also the gatekeepers. RPEs are at least partially responsible for the immune privilege of the eye. Remember we talked about how the eye is such a great place to do stem cell experiments because the immune response is so weak? Part of that weakness is due to the great jobs the RPEs usually do. They block bad things entering our eyes from the rest of our system.

RPEs gather up scattered light to make images sharper. That also keeps the light from causing extra oxidative stress.

Simply put the visual cycle is the amount of time as well as all the steps it takes for pigment in the photoreceptors to be depleted and then build back up again. The RPEs do much to control this.

Lastly, the RPEs produce signalling molecules that ‘talk’ to different parts of the system. Lots of very important functions for a one-cell thick layer of cells.

Age-related macular degeneration is not the only condition that causes vision loss due to malfunctions involving the RPEs. A more common one you may heard of is retinitis pigmentosa (RP). Their losses start in the periphery and progress inwards. Those with RP go blind. That’s BLIND. Maybe we ARE the lucky ones.

Do I know why our deterioration generally stops at the macula? Nope, but I have it on good authority it usually does. Usually does not mean 100% guarantee. Just usually. It is the best that I can do.

written October 10th, 2017

Continue reading “Important Cells”

Keep Calm and Carry On

I want to get this typed and out because Lin and I both suspect people will not listen to me or Paul McCartney and let the suggestion of atrophic damage beyond the macula be.

How can you not listen to Paul? He was my favorite Beatle when I was a teenager! Remember when the Beatles were on Ed Sullivan? [Lin/Linda: of course I do – I was sitting on the floor in front of the TV loving every second of it.]

What? Pertinence to the topic? Okay. Sigh.

Found an article based on research coming out of Seoul, South Korea. The research looked at peripheral reticular pigmentary degeneration (PRPD). That is lesions on other areas of the retina as opposed to lesions only on the macula.

Primero point: the authors say three or four times this type of degeneration is rare, rare, rare. They had trouble finding enough people to make their study valid.

Point segundo: patients with degeneration of the peripheral retina are significantly older than patients who do not have it. Yes, some of you are up there but most of us don’t have to worry about the truly advanced age factor for some time.

Point three, whatever that is in Spanish [tercero]: the most common, probably contributing factors in these people were factors related to compromised circulation. That was both systemic and ocular circulation. The biggies were found to be retinal artery occlusion, ischemic (low blood flow) optic neuropathy, and a couple of other ischemias. [Click here for more about these conditions that are sometimes called ‘eye strokes’.]

One that sort of scared me was a positive correlation with high blood pressure. However, last week my pressure was 122/78! Admire it now because I cannot tell you the last time it was so beautiful.

Other factors are as follows: stroke, carotid artery stenosis, and yes, AMD.

Now don’t get your panties in a bunch just yet. The theory is, once again, there are common, underlying factors leading to these conditions. AMD does NOT cause PRPE although the same may not be said in reverse. PDPR may promote the development of AMD.

They are looking at a shared genetic risk between AMD and PDPR. There is evidence a complement factor H variant is involved in coding for a propensity for PDPR just as it is thought to code for some (all?) variants of AMD.

Choroidal ischemia is a factor in AMD as well as PDPR.

So, bottom line here: this is a very rare occurrence, especially in younger oldsters. It is related to poor circulation. Circulation tends to get worse as we get older. It is also possibly related to variants in complement factor H.

Can’t change your genes just yet at any rate. Cannot get any younger. That leaves taking care of your circulatory system. Do what you can to improve it.

As an anonymous member of the British Ministry of Information said: “Keep calm and carry on.”

Our journey is not over yet.

written October 8th, 2017 Continue reading “Keep Calm and Carry On”

Let It Be

Onward into massive confusion! I may not have the brains to understand this stuff but I make up for it in pure, dogged tenacity.

I looked up peripheral retina atrophy and discovered Eyewiki considers atrophic retinal holes to be full-thickness, retinal breaks generally occurring in the peripheral retina. They are not caused by vitreous adhesions like macular holes. Remember macular holes are caused when the ‘strings’ in the vitreous latch on and tug. The cause for the death of these parts of the peripheral retina is thought to be a failure of blood supply and not drusen or any of the complement factor SNAFUS we may experience in AMD.

So that is one thing I found suggesting peripheral retina atrophy and AMD are not related. HOWEVER, I also found an article suggesting they are and AMD might not be just for maculas any more. Just to make everything more delightful, Ophthalmology in April, 2017 published a study about peripheral retinal changes associated with AMD. (One of the authors for this study was Chew, EY! Beastie Baby would have approved!) Their conclusions were these: peripheral eye changes are more prevalent in eyes with AMD. These changes can be mid-range and/or far periphery of the retina. They decided AMD may be a full eye condition and suggested further study.

Another study done in Croatia and published online in Ophthalmology Retina September 22, 2017 found peripheral drusen, reticular pigment changes and paving stone degeneration occurred more often in those with AMD than in controls. Paving stone degeneration is constituted by small, discrete, rounded areas of loss of pigment and thinning of the retina.

In my limited research nothing said that AMD leads to full retina deterioration. My local retinologist did not say that was the case either.

I am not a doctor and I am groping for answers just like you. Don’t believe a word I say. That said, to clean up the saying a bit, opinions are like tushies. Everyone has one.

This is mine on this topic: Peripheral atrophy and geographic atrophy are probably not the same ‘animal’. There may be some, common underlying mechanism but we don’t know what it is yet. When I was talking to my local doctor he mentioned what might have been the presence of peripheral retinal atrophy in some of the same people who had AMD. Just because they are both present does not mean causality one for the other. He also said he had seen it only rarely and in the very old. Having seen even one case, he was not going to make me any promises things would not go from bad to worse.

Now to my soapbox. I have more than enough to worry about with my macular degeneration and I expect you do too. I am not going to buy trouble. I could waste every minute of every day worrying about a bunch of what-ifs. I have better things to do with my time. I suspect you do, too.

Let it be….
Paul McCartney, 1970

written October 7th, 2017

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