Macular Degeneration Foundation, Inc.

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THE MAGNIFIER   Issue #29, March 31, 2005

Newsletter from the Macular Degeneration Foundation, Inc.
P.O. Box 531313  Henderson, NV  89053
http://www.eyesight.org


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MACUGEN HAS BEEN APPROVED BY THE FDA FOR THE TREATMENT OF WET MACULAR DEGENERATION

On December 20, 2004 the FDA announced the approval of Macugen, a new therapy to slow vision loss in people with the eye disease neovascular (wet) macular degeneration.

The safety and efficacy of Macugen was studied in two trials in patients with wet AMD for two years.  Patients treated with Macugen exhibited a significant decrease in vision loss in both trials.

What Can Patients Expect from the Macugen Treatment?  Dr. Evangelos Gragoudas, director of retina services at the Massachusetts Eye and Ear infirmary and a professor of ophthalmology at Harvard Medical School states, "Macugen effectively slows the growth of new blood vessels within the eye.  It also prevents the leakage of fluid which is very common in abnormal vessels.  Sometimes, even if the vessels themselves don't completely disappear or regress, the fact that the fluid is absorbed can have a good effect on the patient."

What Are The Adverse Effects?   The most frequently reported adverse effects in patients treated with Macugen 0.3 mg for up to two years were anterior chamber inflammation, blurred vision, cataract, conjunctival hemorrhage, corneal edema, eye discharge, eye irritation, eye pain, hypertension, increased intraocular pressure, ocular discomfort, punctate keratitis, reduced visual acuity visual disturbance, vitreous floaters, and vitreous opacities.  These events occurred in approximately 10 - 40% of patients.

What Happens After The Injection?  Following the injection, patients should be monitored for elevation in intraocular pressure and for endophthalmitis.  Monitoring may consist of a check for perfusion of the optic nerve head immediately after the injection, tonometry within 30 minutes following the injection, and biomicroscopy between two and seven days following the injection.  Patients should be instructed to report any symptoms suggestive of endophthalmitis without delay.

How Does Macugen Compare To Photodynamic Therapy? Macugen is an "Open Label" drug and can be used for any form of wet macular degeneration or patients with lesions.  Only about 25% of the wet AMD patients with blood vessels growing under the center of their vision will qualify for photodynamic therapy.   During the Macugen trials, photodynamic therapy was used in some cases along with the Macugen injection.

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WHAT IS PHOTODYNAMIC THERAPY?

Photodynamic therapy is an FDA approved treatment for certain types of choroidal neovascularization under the central retina.

In PDT, a photosensitive dye known as Visudyne (verteporfin) is administered intravenously (IV) and allowed to perfuse the new blood vessel growth, as well as the remainder of the body. Then the ophthalmologist treats the new blood vessel growth with a red laser of a specific wavelength (689nm) for about 90 seconds. The non-thermal laser light activates the Visudyne producing an active form of oxygen that both coagulates and reduces the growth of abnormal blood vessels. This, in turn, inhibits the leakage of fluid from the new blood vessel growth. Unlike traditional laser, the treatment does not burn the retina and so no blind spot is created. Unfortunately, the blood vessels often grow back and most patients require re-treatment with PDT 3-5 times over the following 1-2 years.

What is Visudyne used for?  Visudyne is used to treat certain forms of macular degeneration, it is most commonly used for the classic form of the disorder.

Who Should NOT Be Treated with Visudyne?  You should not be given Visudyne if you are allergic to certain pigments called porphyrina or have a medical condition called porphyria (a disorder of the metabolism that can lead to sensitivity to light.

Special Warning With Visudyne:  Patients treated with Visudyne become more sensitive to the effects of sunlight (photo-sensitivity) and must avoid exposing skin or eyes to direct sunlight or bright indoor light for at least 5 days.

Possible Side Affects From Visudyne could be headache, injection site reaction, blurred vision, reduced visual sharpness or sunburn.

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LETTERS TO LIZ

Dear Liz,  Shelly From Fresno writes: "I am 41 years old and have been diagnosed with MD.  I know this is genetic because my mother, grandmother, and two of my mother's sisters also have this eye disorder.  I was stunned to find out that I was diagnosed at such a young age; however I was not shocked because of my family history.

I purchased a micro-current stimulation device a year ago and I use it  faithfully.  The first benefit I noticed was that the wavy lines on the Amsler Grid became straight.  My most recent eye exam confirmed that my condition has stabilized with my eye sight still 20/20.  I am waiting for my exam with my retinal specialist in a few months to confirm that there are positive changes in my eye condition.   Thank you for the phone support, the newsletters, and the brochure information".

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Dear Liz,  Hugh, an artist from North Carolina writes,  "I have to tell you a few months ago, I was devastated when I learned that I had MD.  My left eye was very blurry.  My Dr. suggested a treatment; but for some reason I did not feel comfortable making a commitment at that time.  I was told I could lose vision with the treatment and I could lose further vision without the treatment.  Looking for anything that could help, I found a microcurrent device on the web and felt at that point I had nothing to lose.  I ordered it in January, 2005 and have noticed continued improvement in my vision.  The most dramatic news came recently from my regular DMV eye test.  For the first time since I was 16 years old the restriction to wear eyeglasses while driving was removed from my license". 

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CONTACTING MDF
To speak to a support representative directly, you may call 1-888-633-3937.  If you reach our voice mail, please speak slowly and distinctly.

ORDERING BOOKS & TAPES
When purchasing items from Amazon.com, please remember to use the MDF search box located at http://www.eyesight.org/Books/books.html .  By simply originating your search from our website, Amazon rewards the Foundation with a small commission from each product you order.  Thank you.

MAKING CONTRIBUTIONS:
Please make checks payable to Macular Degeneration Foundation, Inc., P.O. Box 531313, Henderson, Nevada 89053, or you may use your credit card on our web site http://www.eyesight.org/Donations/donations.html .  Your contributions make our services available as a support system for macular degeneration patients in the following ways:

1. We provide toll-free lines for personal contact assistance.
2. We mail brochures and other printed materials upon request.
3. We support an award-winning web site that provides the latest up-to-date information.
4. We fund research proposal grants to provide therapies for both the wet and dry form of AMD.  Contributions marked "research" are used 100% for research.


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PRODUCTS FOR LOW VISION
To order the eye supplement that is endorsed by the Macular Degeneration Foundation, OPTOTABS, visit http://www.optogon.com.  This site also provides low-vision products that have given many victims of vision loss the ability to read important documents.  Call this toll-free number for more information 800-924-4393.  A percent of the proceeds from the sale of these items is invested into Macular Degeneration Research.


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MDF was founded in 1992 by Edmund J. Aleksandrovich Ph.D (a victim of macular degeneration).  It provides MD patients and their families with the information necessary to understand the disease, the latest news concerning ways to cope with the disease, and supports the efforts of researchers to find a cure.

Subscribers who wish to cancel their subscription or change their email address may visit: http://www.eyesight.org/Newsletter/newsletter.html .


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