Category: Wet AMD

Tales from the Wet Side: Part 3 I’m a Person, Too!

Speak Up to Your Doctor by Jennifer Poole
I don’t know about other Retinal Specialists, but my RS is a VERY busy man. He goes from one treatment room to another, with a packed waiting room outside, gauging disease progression and treatment outcomes for every single person to the best of his ability. It’s no wonder we can become “the next patient” and no longer a person with a life and individual needs. However I’m lucky that he’ll pause and speak with me when I have concerns.
I believe his response is also because I take time to educate myself, I don’t ask for miracles and I thoughtfully present my side of the issue.

I’ve been receiving Lucentis in both eyes for about a year and a half on a treat and extend basis, with me rushing in (at great hassle and delay) to have treatment when I have a visual indication of leakage, that is either distortion or shadowy spots. A recent article posted by Linda confirmed what I have been thinking for a while now. I spoke to my doctor about it in very frank terms.

I said “I am in my mid forties with 20 years of earning potential (and need) in front of me. I feel like I’m risking some permanent damage with every leakage occurrence, if I can be treated right away, or if leakage is occurring but I don’t notice. I am asking if this reactive treatment protocol is the best option for me. Perhaps I should be on a proactive, preventative schedule, where we are keeping the retinas dry to preserve as much vision as possible. Even if there is minor, negligible damage each time, over 20 years and beyond, they will add up to the point that I can’t work, or drive to get to work, which is the same thing.”
Here is the quote from the article: “Studies have found that after the initial monthly dosing, many doctors fall back upon PRN [as needed] treatment and fewer injections. Dr. Brown says he understands why doctors would tend to shift in this direction. “I think both the doctor and the patient get fatigued by the protocol,” he says. “Doctors are certainly aware that patients would prefer to come in less often. On the other hand, most patients don’t want to go blind. So I don’t think you can make a good argument for any paradigm that leads to undertreatment. “As with anything in medicine, you can look at it in terms of the risks and benefits of the therapy,” he adds. “The risk associated with an extra injection is the risk of endophthalmitis, which is about 1 in every 3,000 injections. The risk of a recurrence of the disease is 80 or 90 percent. So it seems to me that the pendulum should always swing in favor of a fixed dosing schedule determined by treat-and-extend.” We briefly discussed it, and he changed my schedule to an exam and injection every 4-6 weeks.
I truly HATE those injection days and having more of them is not my ideal, but neither is slowly losing my vision. Sometimes you just have to do the thing you hate, for the greater good.

Continue reading “Tales from the Wet Side: Part 3 I’m a Person, Too!”

Tales from the Wet Side: Part 2 Making a Living

Making a Living – by Jennifer Poole

Every time I’m in the doctor’s office on injection day – he does planned injections only on Thursdays – I’m amazed by how many people are in there. There are so many of us with Wet MD. I take some small comfort in knowing that many others will be home that night, trying to ease their scratchy, achy eyeballs, just like me.

Almost all of them are older than me, and most of them look old enough to be retired. Many of these people have driver/companions my age.

And there’s me. For those of us with wet MD and still working and raising kids, getting injections can be a very time consuming and complicated thing to factor into your life. Every 4-8 weeks or so, I need to try to fit an injection and recovery day into my work schedule. Sometimes the injection is not planned, if there’s been a fluid leak, so I need to try to plan projects at work to continue around my absence, and schedule testing dates and meetings for when I can be present. I must use up vacation time for any missed work days. To minimize this, I try to get the latest appointment they have, so I can work most of that day first. The medicine leaves a big black blob in my vision until later on Friday, so I don’t feel safe to drive or be around the equipment at work and usually book that day off.

Only my immediate supervisor knows about my condition, so I find I’m avoiding questions and comments from coworkers on being off for another long weekend. For unplanned injections, I have fibbed about why a hot project is delayed by a couple of days. Don’t even ask how I explain away my bloodshot eyes for the week afterward! My husband also has to take time off on my treatment days to accompany me and drive me back and forth. Thankfully, his company is very understanding and lets him go without question. I know he feels bad leaving them short-handed at times, but I do need him there with me.

I can’t drive that night, so I need to make arrangements for my son to get home from cadets by cab. At my expense and worry of course, he is only 13 years old. If my husband stays home to pick him up instead, then he is abandoning his bowling team on a regular basis. I don’t want to complain too much. I am so grateful to have the medicine that works to keep vision loss at bay.

I will make these accommodations gladly in order to have the treatment. I just sometimes wish I was retired too.

Continue reading “Tales from the Wet Side: Part 2 Making a Living”

Tales from the Wet Side: Part 1 Too Young

“You’re too young for this!” By Jennifer Poole (see her biography at the end of the page)

This is what I hear nearly every time I go to my retinal doctor’s office on injection day. At 46 years old, it’s comforting in a way to feel like a youngster in the room. That hardly happens anymore! I can think of twice when I saw someone younger than me and my heart breaks wondering what their future holds. I wonder what my future holds.

I used to joke that once you hit 40, it’s all downhill. In my 40th year, I was diagnosed with fibroids, had an infected tooth removed and was told I had Age-Related Macular Degeneration. Age-Related?? At 40? I felt better than I had in years though, and so I kept up my semiannual checkups with my overbooked Retinal Specialist (RS), and didn’t feel too bad about it. Each appointment he would say there was no change, take your vitamins, monitor the Amsler Grid, see you next time. I made some minor lifestyle changes, more leafy greens, wearing my sunglasses and hats, trying to exercise more.

When I was 45, I attended an artist’s retreat in Pennsylvania and near the end of the week, I woke up seeing double. Deep down, I knew what it was, but I didn’t say anything. A little bit of denial going on I think. I needed to see my RS, as soon as I possibly could. Knowing what I know now, I think I would have gone into the emergency room as soon as I got back to Canada. But I waited to see my RS, and had my first Lucentis injection approximately 2.5 weeks after it happened. It was Choroidal Neovascularization, or wet MD. It meant that new, weak blood vessels beneath my retina were leaking fluid and causing a ripple in my retina, which showed up as double vision. A few weeks after the first injection, my double vision finally came together. By the third injection, my colour blindness was gone and the grey spots were transparent again.

It has now been 18 months, I continue to receive injections and my vision is pretty good. I have 20/20 acuity with glasses and a very slight wobble to a few lines on the Amsler Grid. Many months ago, I found this website and corresponding Facebook group and I’m grateful every day for Sue and Linda who open my eyes and mind to so many things regarding these macular diseases. The group members are a wonderful supportive community too, and I’m pleased to share some of my story with you.

Jennifer Poole was diagnosed at the age of 40 with Dry Macular Degeneration. Five years later, it had turned to Wet MD and she began treatment to retain her vision. She is now working to maintain and improve her eye health while trying to keep life as “normal” as possible. Jennifer lives with her husband, a teenaged son and preteen daughter, as well as a dog and two cats in Southern Ontario, Canada. She works as a chemist and volunteers for the organizations her kids are involved in. In her spare time, she enjoys creating art, cycling, cooking and gardening. Her backyard is her oasis, complete with corny lawn ornaments and bird feeders, and she can often be found there, putzing around all seasons of the year.

Continue reading “Tales from the Wet Side: Part 1 Too Young”

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 Continue reading “UPDATED: Are there eye drops instead of injections to treat wet AMD?”

Highlight: What is Myopic Macular Degeneration?

There are quite a few eye diseases that cause degeneration of the macula. The most common forms of macular degeneration are defined by age, at least in part:  1) Age-Related MD (AMD or ARMD) and 2) Juvenile MD (JMD) – several inherited and rare diseases that affect children and young adults including Stargardt’s Disease, Best Disease, and juvenile retinoschisis.

There is another form of macular degeneration called Myopic Macular Degeneration or Myopic Maculopathy.

What is myopia?

If you have trouble seeing things far away like road signs, your eye doctor may have said that means you are nearsighted because you can see things near better than far.   Some people call it being shortsighted.  The medical/optical term is myopia.

Top of diagram shows normal eye & vision. Below, myopic eye and vision.

Myopia occurs when the eyeball is too long relative to the focusing power of the cornea and lens of the eye (see diagram above). This causes light rays to focus at a point in front of the retina, rather than directly on its surface.   It can also be caused by the cornea and/or lens being too curved for the length of the eyeball. In some cases, myopia is due to a combination of these factors. Click here for more information.

There are different degrees of myopia: mild, moderate and high (also called pathological myopia).   The higher the degree, the higher chance of the degeneration of the macula.  Click here for some other risks for high myopia including retinal detachment, macular detachment, glaucoma and macular holes.

Myopic Macular Degeneration

People with high myopia/pathological myopia are at risk for damage to the macula from the stretching of it as the eyeball grows throughout life.  Here’s a good description of what happens: “As the eyeball grows and stretches, it may also cause an area of atrophy and/or cracks in the layers under the retina. These cracks can serve as conduits for abnormal blood vessels to grow under the retina. These vessels can hemorrhage and scar which is similar to what happens in wet macular degeneration. The onset of the nets of abnormal blood vessels, called Fuch’s spots, often occur in the 4th to 6th decades of life. Approximately 5% of pathological myopia patients develop Fuch’s spots, which lead to damage in the macular region of the eye and a subsequent loss of central vision.” From http://www.lowvision.org/Pathological%20Myopia.htm

Not all people who are myopic get Myopic Macular Degeneration.

Click here for an explanation of how the atrophy can occur as well as how the blood vessels grow into the macula.

The symptoms are similar to AMD & JMD as well.  Click here to learn more about them.  This article will take you to stories of people who have Myopic MD.

Click here for a first-hand account of the disease from a person with it.

Other links:

Myopic Macular Degeneration

American Academy of Ophthalmology Diagnosis and Treatment of CNV in Myopic Macular Degeneration

Degenerative Myopia

Treatment Patterns for Myopic Choroidal Neovascularization in the United States, article published July 2017 edition of AAO Journal (AAO is American Academy of Ophthalmologists).

 

 

Highlight: Does wet AMD start as dry?

There are differing opinions and interpretations of what those in the field of macular degeneration have learned.  The links below certainly don’t represent all views, of course, but are an example of some of what you will find.

The important point is that it is CRITICAL to get your eyes examined as recommended by your doctor and to monitor your vision between exams. Click here to find out how to do that.

From: http://www.webrn-maculardegeneration.com/macular-degeneration-stages.html

“Advanced AMD is either a break-down of light sensitive cells and supporting tissue in the central retinal area (advanced dry form), or the development of abnormal and fragile blood vessels under the retina (wet form).”

From: https://www.macular.org/dry-vs-wet-macular-degeneration

“About ten percent of all cases of Age-related Macular Degeneration become “Wet” AMD (typically a person has dry AMD first and progresses toward wet).”

From: https://nei.nih.gov/health/maculardegen/armd_facts

“There are three stages of AMD defined in part by the size and number of drusen under the retina. It is possible to have AMD in one eye only, or to have one eye with a later stage of AMD than the other.

Early AMD. Early AMD is diagnosed by the presence of medium-sized drusen, which are about the width of an average human hair. People with early AMD typically do not have vision loss.

Intermediate AMD. People with intermediate AMD typically have large drusen, pigment changes in the retina, or both. Again, these changes can only be detected during an eye exam. Intermediate AMD may cause some vision loss, but most people will not experience any symptoms.

Late AMD. In addition to drusen, people with late AMD have vision loss from damage to the macula. There are two types of late AMD:

In geographic atrophy (also called dry AMD), there is a gradual breakdown of the light-sensitive cells in the macula that convey visual information to the brain, and of the supporting tissue beneath the macula. These changes cause vision loss.

In neovascular AMD (also called wet AMD), abnormal blood vessels grow underneath the retina. (“Neovascular” literally means “new vessels.”) These vessels can leak fluid and blood, which may lead to swelling and damage of the macula. The damage may be rapid and severe, unlike the more gradual course of geographic atrophy. It is possible to have both geographic atrophy and neovascular AMD in the same eye, and either condition can appear first.”

From: http://www.avruc.com/macular-degeneration.php

“The macula is the central part of the retina and allows us to read fine print clearly and see colors vividly. It is this area of the retina that deteriorates in ARMD. There are 2 forms of ARMD. Everyone who has macular degeneration starts out with the dry type and 20% progress to the wet type over the course of a lifetime. “

From: http://www.youreyes.org/eyehealth/macular-degeneration

“Can the dry form turn into the wet form?
Yes. All people who had wet form AMD had the dry form first. 

The dry form can advance and cause vision loss without turning into the wet form. The dry form also can suddenly turn into the wet form, even during early stage AMD. There is no way to tell if or when the dry form will turn into the wet form.

Can advanced AMD be either the dry form or the wet form?
Yes. Both the wet form and the advanced dry form are considered advanced AMD. Vision loss occurs with either form. In most cases, only advanced AMD can cause vision loss. 

People who have advanced AMD in one eye are at especially high risk of developing advanced AMD in the other eye.”

Please see your doctor for regular exams and between exams, check your vision at home.

I Have Macular Degeneration…Now What?

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

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Super Lab Rat

So now I am reasonably sure I have a shot at becoming a test subject. Never really believed one of my greatest ambitions in life was going to be to become a lab rat. However, I can assure you I had ambitions to be the best damn lab rat Wills Eye has ever seen. My visual gains will be extraordinary! I will become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit. I will be brilliant. (Did I happen to mention I have no problems generally with my self-esteem? Perhaps…can you spell megalomania?) I even designed my t-shirt. It includes a drawing of a cute little mascot that will, of course, represent the hospital for decades to come.

I will be the best damn lab rat Wills eye has ever seen! I’ll become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit.

I did continue my research. I wanted to know what exactly I was getting into. I’m not one for invasive procedures or even for a lot of ‘doctoring.’ However, assuring vision for myself in the future tended to trump all other considerations.

Although Regillo tended to gloss over some of the more gory and unpleasant details, I wanted to know. My source was the 2015 Lancet article on the Phase 1 experiment.

Let me go off on a tangent here for a moment. Until I got into this, I had no clue what happens in clinical trials. Short tutorial if I may: clinical trials are made up of four phases. The first phase is a safety and tolerability phase. Essentially, the researchers are looking to make sure that nothing serious goes wrong. They want to make sure that no one has an allergic reaction or grows stray body parts where they should not be growing.

In Phase 1 they want to make sure no one has an allergic reaction or grows stray body arts where they should not be growing.

After Phase 1, the efficacy experiment starts. They want to see how their treatment actually works. Does it do what they claim it will do? They also start messing around with different independent variables to see what works best. In the study I am trying to get into, for example, they are comparing different immunosuppressant drugs to see which one works best. In other Phase 2 experiments they compare slightly different operation procedures or any more of the dozen of different treatment variables. All Phase 1 studies use only a very small number of people, Phase 2 studies use many more.

In Phase 2 they want to see how their treatment actually works.

As I understand it, Phase 3 studies are essentially larger variations on Phase 2 studies. Techniques and procedures are refined and the subject pool is made up of hundreds or even thousands of people.

In Phase 3 they perfect the techniques and procedures on more people.

Phase 4 is sort of like an off-Broadway show or traveling company. Instead of just being administered by people at the experimental sites, the procedures are now made available to other professionals to try. Reports are made back to the original team. By this time, the subjects can number in the thousands. Once a procedure gets through Phase 4, it is ready for prime time. If good enough, it can become standard procedure around the globe.

In Phase 4 they make their procedures available to other professionals to try at other locations.

Written February 2016. Updated 2018.

Continue reading “Super Lab Rat”

Where All Roads Lead

So, did I mention that I was told there is no cure? Those of you with wet macular degeneration can be given shots. They actually sound rather disgusting but seem to work. The purpose of the shots is to slow the growth of new veins. This will help reduce the bleeding in the eye.

Dry macular degeneration has no cure. That is, it has no cure yet. Having the personality I have, taking “no” for an answer or taking “I don’t know” for an answer is simply unacceptable. That was why I put so much effort over last summer into finding another way out of this mess.

I don’t take “no” or “I don’t know” for an answer.

Fourth of July, 2015 was a rainy, dismal affair. For some unknown reason I picked that miserable day to throw myself a pity party. I sat imagining what it would be like to be blind. I sat imagining what it would be like to be handicapped and pretty much alone. After about four hours of this, I got bored. Blind was not for me if it was going to be so damn boring. Consequently, I made a decision. I was not going to go blind and if I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

If I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

It was after this bit of epiphany I started to seek treatment in earnest. My ophthalmologist told me probably the best chance of a cure was in stem cell therapy. However, stem cell therapy on eyes was in its infancy. They had run so few people through the procedure there was no way of knowing for sure what was going to happen.

I was sure of one thing: Age-Related Macular Degeneration results in central blindness. There are no maybes. It will eventually happen. Enrolling in a study would give me a chance. The chance maybe only 1% but it was 1% more chance than I had doing nothing.

AMD results in blindness of the central vision. I was sure of this one thing.

Also, when you hit a certain age, some people like to leave a legacy. One of the developmental psychologists had a name for this stage in life but I don’t remember what it was [Editor’s note: Erik Eriksen] Essentially, this time in my life is one during which I should give back. I should lead those who are younger. I should contribute. This was going to be my chance. Great secondary gain. I wanted to save my damn sight.

I wanted to save my sight but I also wanted to lead those who were younger.

There are sometimes I believe the Universe—capital U–is showing me the way. I would look at eye drops and come back to stem cell research. I would look at oral medication and come back to stem cell research. I would look at laser treatments and, yep, come back to stem cell research. The writing in the stars was pretty obvious. I was going to get into that study one way or another.

The study I chose was a stem cell study replacing dead and worn out RPEs. This particular study is being done on both coasts. At UCLA medical center the lead researcher is Stephen Schwartz. The lead researcher on the East Coast is Carl Regillo.

The lead researcher for the stem cell therapy is in Philadelphia which is a day trip for me.

Never heard of him until I started doing my research. Then I realized the man is a rock star of retinas. Regillo has over 700 publications to his credit. He has been named to the best physicians in America list at least eight years running. But just about the best thing about Regillo? He is practically right in my own backyard! Regillo is a mover and shaker at Wills Eye Hospital in Philadelphia.  Philadelphia for me is a day trip. Even better, the good doctor has an office in Bethlehem, perhaps about 2 hours away. Yet better, I got an appointment within three weeks of asking and they took my insurance! So far, it does not get any better than this.

Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.

Written in February 2016. Reviewed September 2018.

Continue reading “Where All Roads Lead”

Sue’s Journal Pages

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

Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.

 

2024 Most Recent Pages

Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial

2016

Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.

2019

It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023).  Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

2022

In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

2023

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.

After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.

She also wrote What Does Syfovre Mean for You?

She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.

2024

 

 

 

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages (some of the more recent ones may not be here yet)
  3. If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)

 

 

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

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