Whoops! Blank comment.
Anyway, I want to echo Amanda's comment: the shots aren't nearly as scary as they sound. The prep is actually more unpleasant, to me. And the gadget they use to hold your eye open. The shot itself is so, so quick and really just a tiny sting (this is Lucentis, not sure about Avastin). My understanding is that if you can treat edema with medication rather than laser, you want to do it, because with laser there is potential for lost peripheral vision.
I know this is a different issue....but does anyone know about corneal dystrophy?
I'd heard mention of this about a month ago on the news but I would presume that they have taken care of getting rid of the offending Avastin/syringes.
Sorry Linda but I haven't heard of corneal dystrophy.
Here is another article about Avastin causing blindness:
http://www.nytimes.com/2011/...more-reports-of-avastin-causing-blindness.html.
Can't open the links, but sounds scary. In my case Avastin helped, but that was a few years ago and there might be better options today. I can also confirm, that the injections are really not that bad as they sound, could not feel any pain.
Miss Robbie: You asked about working. Unfortunately I lost my job during the vision loss, I was simply not able to work. After my vision recovered, I have luckily found other work. Really wishing you strenght and I hope you will be able to work soon again! Computers' own magnifying screen function helps already a lot.
Brigitte: My laser, Avastin and vitrectomy treatments were in the Netherlands. Strenght to you as well!
And of course to all of you guys, xxx
I apolgize for the broken links. Basically,a number of cases of blindness occurred among people being treated with Avastin by the Veterans Administration in 2011. The problem seemed to be that the Avastin had to be broken into smaller doses than it was sent by the manufacturer and therefore required additonal handling which resulted in occasional contamination. The people treated with the contaminated Avastin were made completely blind in the treated eyes.
Lucendis is a slightly different formulation of the same drug. The manufacturer received FDA approval for its use with Macula Edema in August 2012, and the manufacturer claims to have reformulated it specifically for the new use. The molecules are smaller than those in Avastin. I can say from having had both, that my eyes tolerated the Lucendis better and i saw dramatically more improvement.
Also, (and I apologize if this has been covered), Lucentis is a lot (like, tens of times) more expensive than Avastin.(It's a whole big controversy, my doctor says that Lucentis is keeping Genetech in business! Probably an exaggeration.0 My insurance so far hasn't balked at covering it (a miracle!) but my doctor said that if it did, she would probably use Avastin, instead, and thought it would be a viable other option.
Leata,
Avastin is not FDA approved for diabetic macular edema whereas Lucentis is FDA approved. Both drugs are made by Genentech and are remarkably similar. Lucentis blocks more types of VEGF than Avastin.
Avastin, used in chemotherapy, is approved for treatment of certain cancers but is the standard of care in many areas of the U.S. for treating many eye diseases such as wet macular degeneration and diabetic macular edema.
It is my personal drug of choice for both of these conditions.
Randy
Amanda02,
The difference between Lucentis and Avastin has to do with FDA approval and compounding pharmacies.
Avastin is not FDA approved for the eye. Hence, the manufacturer can not package smaller "eye" doses. Instead, a "compounding pharmacy" must purchase a larger of volume of the drug from the manufacturer and divide it into smaller doses for use in eye patients.
The drug manufacturer must comply with FDA guidelines where as compounding pharmacies are not governed by the FDA.
Hence, several "outbreaks" of infections have occurred due to a few irresponsible compounding pharmacies.
r
WHAT IS A COMPOUNDING PHARMACY??? please explain. thank you.
A "Compounding' Pharmacy does actual drug mixing and compounding on site. They require phamacists with special licenses to mix drugs.
Compared to a CVS, Walgreen's, Rite Aid, etc., a compounding pharmacy custom makes (like Steve D says) drugs, ointments, etc not mass produced by manufacturers.
They can also repackage drugs. In the case of Avastin, Avastin is purchased in large quantities fit for systemic chemotherapy...where as we need less than 0.1 cc.
r
Perhaps Dr Wong can shed some light on the prognosis of Corneal Dystrophy :)
I found a website that talks about macular degeneration and their is support groups .
My eye doctor just told me yesterday, I have a retinal detachment in my right eye and I will experience vision loss. I am in a fog because what is my job future?
Missrobbie, wht is he going to do about it...and when? I think time is of the essence as far as the future of sight.