AMD: Age-Related Macular Degeneration
Bill Campbell: 13 Oct 10
Muriel’s Journey with Age-Related Macular Degeneration
Muriel was diagnosed with Dry Age-Related Macular Degeneration (AMD) in early 2000. She noticed that the skyline was wavy and that the numbers on the bedroom alarm clock were broken up. Her GP referred her to an ophthalmologist. She was then sent to a retinologist who took photographs of the retina. The yellow “drusen” deposits could be seen in the photos. The retinologist performed a ‘Hot” laser treatment on each eye. We learned later that this was an experimental treatment since there is really no treatment for dry AMD. This treatment should not have been given. All that one can do for dry AMD is take an over-the-counter vitamin supplement that is based on the results of a controlled study called AREDS – Eye Assist is the Rexall brand name while the name brand is Vitalux. (Muriel is still taking this supplement.)
A new retinologist came on the scene in June 2005. At that time the right eye was now diagnosed as “wet” AMD – the worst kind. The left eye was very close to “Wet”. Right eye was 20/200 and the left eye was 20/60. He performed photodynamic therapy with a “Cool” laser treatment on the right eye after an injection of Visudyne into the blood stream. (Only about 10% of those with dry AMD progress to wet AMD.)
An injection of the drug Macugen was given to the left eye in September and again in October 2005. By early November the left eye was 20/400! The left eye was then given the first injection of Avastin (This was a very small quantity of the same drug used for colon cancer treatment. Lucentis, which is very similar to Avastin, at the time was undergoing very successful testing in the USA but was not yet approved for AMD.) Up through May 2007 the left eye had six Avastin injections and one Visudyne treatment in November 2006. Vision in the left eye improved to 20/200 where it continues today thanks to Lucentis injections which started in December 2007 and have continued every three or four months and now totals 10. The hope for the Lucentis treatment was that it would stabilize the vision at the 20/200 level. It seems to have accomplished this. Without Lucentis Muriel’s vision would be negligible, i.e. not able to see the big E on the eye chart.
The story on the right eye is somewhat similar. In January 2006 was the first of 8 Avastin injections. Lucentis was started in December 2007 at the three to four month interval and now total 10. The vision in the right eye is also stable at 20/200
With wet AMD the patient loses her central vision. This means Muriel cannot read normal-size print. When she looks at someone she is having a conversation with she does not see the facial features or the colour of the eyes – just a gray blur in the centre of her field of view. However she does have peripheral vision. With this, fortunately, Muriel is able to enjoy hiking in fairly rugged terrain like the mountains around Tucson or the trails in the Gatineau Park. She can ride her bike with me with her to assure her safety when crossing intersections. We do most of our biking on the bike paths in the National Capital Region. She is also able to cross-country ski.
Because Muriel cannot read road signs and can only read a map with difficulty using a hand-held magnifier we purchased a GPS to help find our way while driving. This has been a great assist.
It is the aids that are generally accessed through the CNIB that have helped to minimize the impact of Muriel’s vision loss. The first acquisition was a CCTV which is a table-top device with a moving platen and a screen monitor that will magnify to the desired level (up to 30X) anything Muriel wants to read, e.g. recipes and articles. This sits on a table close to the kitchen. Also acquired were a couple of hand-held magnifiers. The best is a 7X lighted model however a 4X model is sometimes more useful because of its larger field of view than the higher magnification device. For watching TV and going to the movies Muriel uses a set of adjustable glasses that are like binoculars – these are called “TV Max”. A big acquisition was a desktop computer with special software, “ZoomText”, that magnifies what is on the screen and, most importantly, will read what is on the screen. Prior to this Muriel was computer illiterate but now she can do her own e-mail, surf the web to do research for her book club efforts. She downloads electronic books in a special Daisy copyright-protected format from the CNIB Library to store on her computer, or to load onto an SD card for her deck-of-card-sized Humanware “Victor Reader Stream”. She gets a great deal of enjoyment from her electronic books – when she reads in bed she doesn’t have to turn on the light! Muriel also has a larger “Victor Reader Plus” which plays the CDs that Muriel gets free through the post from CNIB, (she usually loads these CDs onto an SD card for her “Stream”). The Ontario Government has an Assisted Devices Program which covers about 70% of the costs for many of the special devices. The CNIB is the gateway to get this funding. Since Muriel is legally blind (vision is 20/200 or worse) she qualifies for the Disability Tax Credit on her income tax.
Thank goodness for all the new technology and miracle drugs that have come along in the last few years! Otherwise Muriel’s quality of life would now be much, much less than what she enjoys today.
If any of our Classmates or spouses would like to chat with Muriel about her treatments or how she copes with her disability she would be happy to help out.
Phil Hindmarch: 18 Aug 10
Several weeks ago I noticed that vision in my left eye had suddenly deteriorated -- looking just through that eye, everything appeared as though I was looking through a grillwork. First I met with an optometrist who referred me immediately to the local retina clinic. Here i was informed that I had what, in effect, was a stroke in my eye. The vein which drains blood from the retina had become blocked, which was causing small hemorrhages in the retina. The retinal specialist (one of only five in Northern Alberta) said that as recently as two years ago the condition was untreatable and led inevitably to blindness. However, a drug was now available which, when injected directly into the eye, alleviated the symptoms. I was prescribed four shots, four weeks apart. After the first shot my vision improved significantly. The second shot resulted in further improvement. I have two shots to go. It may be necessary for me to take more shots at greater intervals to keep the condition from recurring. We'll 'see'. This is considered a vascular problem and may be an indication of other blockages elsewhere in the system. I have an appointment soon at a heart and stroke clinic for further tests.
WIH: 18 Aug 10
Phil: Do you know the name of the medication that's being injected into your eye? Eleanor and I are currently shacked up, so to speak, at the Queen Victoria Hotel in Victoria for her appointment tomorrow when the retinal specialist will give her third injection in the right eye for a similar problem. It hasn't been called a stroke but there is fluid behind the retina that distorts the vision from the eye. The prognosis is not cure but stabilization at least and mild improvement at best. Thus far there has been mild improvement, I believe that two medications are commonly used. One is new and was originally developed as a cancer drug but found to be effective for wet macular degeneration. I'll try to get the name tomorrow and put together a reply when I post your entry in a few days.
Phil Hindmarch: 18 Aug 10
I'm sorry, I'm not at home and therefore don't have access to the documents naming the medical condition or the drug. All I can tell you is that one of the drugs you refer to begins with the letter 'L' (the drug with which I'm being treated, also used to treat macular degeneration). The other drug begins with the letter 'A' and is used primarily to treat various forms of cancer.
My wife Marilyn and I are at present at our cottage on Mayne Island. I have to be back in Edmonton on August 27 for my next shot.
I hope Eleanor has as much success with her injections as I've had with mine. Injections in the eye aren't a lot fun but they're not as bad as they sound.
Let's keep in touch,
WIH: 20 Aug 10
The drugs are Lucentis, developed in 2007, and Avastin, developed in 2008. Both are extensively covered in reliable Internet postings. At $2000 per treatment, Lucentis is by far the more expensive because it was developed to treat macular degeneration and was thoroughly tested for efficacy and side effects. At $150 per treatment, Avasitin is far cheaper because it was developed to treat cancer and was found to be effective in the treatment of macular degeneration. Phil appears to be using Lucentis whereas Eleanor is using Avastin on the advice of her Retinal specialist. Avastin injections will continue on a 4 or 5-week schedule as long as progress continues. When progress ceases, the plan is to use Lucentis less frequently to maintain the improvement. Readings on the web suggest this is a SOP.
The important lesson is that if you see changes in your vision such as wavy lines, or as Phil described, get to an Ophthalmologist as quickly as possible. Early detection can often receive laser treatment that stops the progression. Eleanor, and perhaps Phil, waited too long.
WIH: 21 Aug 10
More on Lucentis - Avastin: www.allaboutvision.com/conditions/lucentis-vs-avastin.htm
Emil Bizon: 22 Aug 10:Bill, the person with the broadest experience with Age Related Macular Degeneration is Muriel Campbell. She went through the dry and wet types and had a variety of treatments. I am certain she will make a contribution to this topic.I get a checkup at my optometrist every year. She takes a photo of the back of the eye which will detect blood vessels which are the first stage of AMD. So one eye had this and she has me looking at a squared paper about 10 cm square with 5mm grid lines and a spot in the center. I do this once a week This is called an Amsler Grid. I close one eye and focus on the center spot and take note of any wavy lines, either vertical or horizontal. I have been doing this for 2½ years and from the start saw only two small waves. Muriel noticed wavy floors on an office building while driving! If there is a change she (the opto) has to know quickly.She has me on an over-the-counter pill called Vitalux which is a massive amount of vitamin A and a few more things. I take two a day. This formulation went through tests and was found effective in slowing down the development of AMD. There are reports of the danger of large amounts of Vitamin A. More than 10,000 IU can cause brain swelling and headaches; one Vitalux has 12,500 IU. I have no headaches but some have accused me of a swelled head! 50 pills cost about $12. A paper on this is available at http://jn.nutrition.org/cgi/content/full/132/3/518S and another at http://www.ncbi.nlm.nih.gov/pubmed/12672909?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.P A very good overview paper is http://medscape.com/viewprogram/6050_pnt which covers the topic of AMD. I would also suggest the website for the Foundation Fighting Blindness- http://www.blindness.orgI would counsel everyone to ensure that a photographic record of the rear of the eye is started by their eye care specialist; not all are doing this. Maybe look for a woman practitioner- they seem to be more conscientious!Lucentis has been OK'd since 2007. It stopped the advance of AMD in 95 percent of patients and improved vision slightly in 40 percent. I have a clipping from the G&M dated 20 Dec 2008 which says that "Genentech Inc has notified doctors of 36 cases of eye inflammation among patients who received injections of Avastin. . . . I can send you the complete clip if you want to post it.
WIH: 22 Aug 10
Eleanor is also on Vitalux since the "precursors" were discovered, but takes only one/day because of the high vitamin A content.
She also monitors her condition with an Amsler Grid that is taped to our ensuite mirror.
Bill Campbell: 27 Aug 10
Greetings from Bonavista NFLD. I picked up your message on AMD just as we were getting ready to leave for the airport so did not respond. When we return to Ottawa on 11 Sep I will put together a case history on Muriel's 8 year journey with AMD.