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”

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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”

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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”

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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

Continue reading “Let It Be”

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Slogging Through Again

I am waiting for my ride to go hot air ballooning and working on deciphering an article Lin sent me. Once again the question is how much loss can we expect from dry AMD, especially geographic atrophy? Regillo told me 60 degrees of arc loss would be extreme but my local retinologist said some people in their 90s can have GA encompassing the entire retina. Ouch.  [Lin/Linda: Sue wrote about ‘degrees of arc’ in her page Love Wikipedia.]

So, here be me again, slogging through another article I about half understand. Want to slog along? I would appreciate the company!

The article is entitled Clinical Endpoints for the Study of Geographic Atrophy Secondary to Age-Related Macular Degeneration published October, 2016. You there in the home audience feel free to download it and play along!

First of all, I latched on the statement (paraphrasing) “drusen may not result in actual visual acuity loss but the effects of having drusen can be seen in functional deficits very early in the disease process”. What functional deficits?

A 2008 paper by Feng Qiu and Susan Leat found people with very early AMD have loss of “low spatial frequency static contrast sensitivity”. Yippee. Once more down the rabbit hole. It appears – according to the appendix of Emergent Techniques for Assessment of Visual Performance – spatial contrast sensitivity has to do with lighting, the place on the retina where the image is falling and something called field size as well as time factors and the orientation of the image.

Boiled down it has something to do with how sensitive we are to variations in the data our eyes are gathering. I think. Don’t hold me to it. Just know that 20/20 vision with drusen might not be as perfect as we might think.

We talked about reduced dark adaptation before and this is also a problem in early AMD. Apparently there are several effects early drusen have that have nothing to do with acuity.

The next thing I had to look up – in the same paragraph, mind you! – was information that might help me understand a statement suggesting advancement to GA from early AMD may in part depend upon the presence of “reticular pseudodrusen”. So now we have drusen impersonators????

According to Association of Pseudodrusen and Early Onset Drusen by De Bats, Wolff et al (doesn’t that team sound perfect for the Halloween season?) pseudodrusen form on top of the RPEs and not below them as do ‘real’ drusen. There seems to be a connection between having ‘eye poop’ aka drusen on top of the RPEs and early and rapid develop of advanced AMD.

And the above was all in one paragraph! I may be a very long time in deciphering this baby.

So what I have discovered so far is this: visual acuity does not tell the whole story about functional vision loss when it comes to early AMD. If you have drusen be aware your contrast sensitivity and dark adaptation are probably already compromised. Secondly, pseudodrusen, which is eye poop on top of the RPEs, can predict a more rapid and earlier progression to GA.

Have I found a thing about GA outside of the macula? Not yet, but I am still reading! Talk at ya later!

written October 7th, 2o17 Continue reading “Slogging Through Again”

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Rookie in Training: Part 2

My family doc referred me to an Ophthalmologist in 2008, after a Walmart Optometrist told me I had cataracts. I’ve been going to this eye doc annually and he told me to take AREDS2 and use over the counter lubricating eye drops. He started mentioning that I had drusen and this August, I asked him point blank – “Do I have AMD?” I don’t know if he would have given me an official diagnosis if I hadn’t forced the issue. He saw blood in my left eye, so did Fluorescein Angiography and referred me to a Retina Specialist. I had doubled up on my Aleve (naproxen) because of pain from a dental procedure and told him that was probably the cause. He thought I had developed high blood pressure or diabetes, or possibly Wet AMD.

Two weeks later, I had my first appointment with the Retina Specialist. By then, I had cut back on the Aleve and the blood had almost disappeared. He did an OCT of my macula for both eyes and said I had dry AMD but was fine otherwise. No wet AMD. I also went back to my family doc who agreed with me that it was probably the Aleve.

Neither of my eye docs ‘believes’ that my DNA could affect the how eye vitamins work or don’t work. The retina specialist thinks future research will debunk the research that showed zinc being harmful to some of us. If AREDS2 is the only recommended eye vitamin, they refuse to consider alternatives. And they refuse to prescribe the ArticDX genetic testing. Although I am a rookie with AMD, I feel like I am more educated on AMD than either of my specialists, thanks to Lin and Sue and all of you.

Until I can figure out my DNA, I am taking the Walmart Vision Formula 50+ which has only 9 mg of zinc. I was already taking extra zinc every time I caught a cold – or thought I might catch a cold – and I have cut back on that and take an extra 25mg with the meal when I am not taking the eye vitamins. (That magic potion to strengthen my immune system also includes 500MG of Ester C and Echinacea.)

I’ve been using an Amsler Grid for a few years now and try to eat healthy. I never smoked. So for now, I think I am doing all that I can. I feel like I am ‘in training’ for a future with AMD. I will follow the research, donate to the foundations supporting research, and let Lin and Sue be my coaches. Knowledge is power.

Back to Our Guest Authors: Their Stories

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Rookie in Training: Part 2
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Rookie in Training: Part 1

by Joann Davis

Because my mother and grandmother both had AMD and my son found out he had AMD genes when he did 23andMe DNA testing several years ago, I have been waiting for my diagnosis for years. I was involved in a Jules Stein Eye Institute GARM II study for people under the age of 65 with parents with AMD but no diagnosis yet. I was so pleased to find Sue’s blog and the Facebook Group and was an early ‘joiner’. I hated the play “Waiting for Godot” and hated “Waiting for AMD”. [Lin/Linda: just checked & Joann has been a follower of our website/blog for 1 year and 5 months…wow, she was one of the first!]

I wish I had taken a more active role in my mother’s eye health. She had cataracts removed at an early age (56) and always ate healthy because she knew that was the best way to stave off AMD. I remember the ‘Swiss Chard’ year when she was eating a lot of Swiss Chard. My dad had a big garden, so she had access to lots of fruits and vegetables. She always said “My mother got AMD when she was in her 80’s and I didn’t get it until I was in my 90’s”. (Makes me feel like a failure to be diagnosed at 70.) I bet she really had dry AMD earlier than her diagnosis. She also had Glaucoma. She had one or two shots in her ‘good’ wet eye, and thought it made it worse, so didn’t get any more shots.

Because of her age, she was having other health problems which made adaptive technology a challenge. Again, I wish I had been more proactive. She was using hearing aids and having small strokes, had serious gall bladder and colon issues, high blood pressure, and arthritis. Because she used a walker, she didn’t get the exercise she was used to. She was on a restrictive diet so she couldn’t eat the healthy fruits and vegetables anymore. She never completely lost her sight, but I know she was depressed as her world kept shrinking. She lived to 95 1/2, and passed away in 2012.

Next: Rookie in Training: Part 2

 


About Joann

Joann Davis is 70 and has recently been diagnosed with mild dry AMD in both eyes. Her mother and grandmother both had AMD and her son has the genes. Joann also has cataracts, floaters and dry eyes. With glasses, her vision is 20/40. Joann spends most of the year in northern Illinois and the winters in Ft. Myers, Florida. Joann is retired but very busy with numerous board memberships. Joann exercises every day, beginning with yoga, crunches, planks, ‘boy’s pushups’, weights, and then a long walk. Joann wants to do as much travelling as she can while she can still see and is heading to Italy soon and plans to go to South Africa next year. Joann’s career was in technology and cyber security sales, and she still belongs to cyber security organizations where she gets to hang out with the FBI and Secret Service.

 

 

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