My adult son was recently dx'd with type 1, Aug.2. I am my son's advocate for health care decisions. He was actually dx'd by his ophthalmologist while undergoing treatment for uveitis in one eye. She discovered that he had a slight macular edema in the affected eye which led to the discovery of diabetes. Now she wants to treat the eye with Lucentus, a recently approved drug for the treatment of diabetic macular edema. His vision is excellent, therefore I am reluctant to have him undergo this treatment since a. His bgs have only been under control for a little over a month's time, and it's my understanding that macular edema can resolve itself with normalized bgs. b. The treatment is new and the FDA does not have a good track record in approving effective, safe medications. I appreciate his doctor's zeal in wanting to resolve the situation quickly, but I'm worried that over treatment could do harm as well. I would be interested to know of other's experiences with eye treatments.

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Lucentis is not really new, its slightly reformulated Avastin....(Avastin has been used off label for this indication for a few years now, but the issues of compounding pharmacies, etc.. plus lucentis is thousands more than Avastin) Agree with your hesitation to treat it BUT... these particular drugs (VEGF Inhibitors) really work to prevent damage, than repairing it (though it has helped pts who already have damage).. My take, is put it off for a bit, but youll probably want to see an ophthalmologist every few months to catch it before it gets worse.. Just my opinion however....
Article discussing the two drugs

Hi Jake,
Thanks again for your helpful information. It's been a couple of more months and I have learned more about the drug. It's my understanding that Genentech developed Lucentus from Avastin to formulate a smaller molecule with less side effects than Avastin. Anyway, we decided to go ahead with the treatment. He's had one shot already that only resulted in a temporary improvement. I think the anti-VEGFs show a lot of promise. It's likely that his eye condition has worsened a little bit because he has brought his bg levels down so quickly. The endo (no longer our doctor) that chewed us out for trying to normalize blood sugars actually dismissed the possibility that his eyes could be affected when I brought it up. Any sudden change in the body like dramatic weight loss, changes in bg levels can worsen retinopathy. Fortunately, his condition is still reversible , although as I'm finding out retinopathy can still progress no matter what you do. My son's insurance is willing to pay, but $2,000 a shot is a ridiculously high price.

There is a local retina specialist in my area that has come and talked with my local support group. He is a member here and runs a blog with really useful information. He has a bunch of information on Lucentis and other similar treatments. It is quite reasonable to ask for information on outcomes and to ask about various studies on the effectiveness and adverse effects.




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