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.

Views: 121

Reply to This

Replies to This Discussion

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
http://www.bmj.com/content/344/bmj.e3162

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.

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

FDA Docket Extended! We Need You.

If you are new to diabetes advocacy in the traditional sense of the word, you may be thinking, “What the heck is a docket!?” I certainly was the first twenty times I heard it (yes it took that long). For Read on! →

An Open Letter from @AskManny, @DiabetesHF to @NYTRosenthal, @NYTimes

Dear Ms. Rosenthal: I am a person living with type 1 diabetes since the age of 30. I am also the President and co-Founder of the Diabetes Hands Foundation, a nonprofit aimed at connecting and mobilizing the diabetes community. Seeing Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Heather Gabel
(Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator
Bradford (has type 1)

Administrators
Lorraine (mother of type 1)
Marie B (has type 1)

Brian (bsc) (has type 2)

Gary (has type 2)

David (dns) (type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service