Discussions By Condition: Eye conditions

wet macular degeneration

Posted In: Eye conditions 4 Replies
  • Posted By: witzend
  • February 27, 2007
  • 11:03 PM

Hi

I need to speak to people who have had treatment for wet AMD. My Mother has it and needs treatment - the one they're suggesting is Lucentis. We were told that the NHS wont pay and that we would have to pay £2000. I was willing to do this as my Mother has already lost the sight in her right eye to AMD and is about to lose sight in her left. I starting searching the internet to see what I could find out. And its a mine field of conflicting stories. I called her specialist and asked more questions - there are actually three injections and they cost £2000 each. I was willing to pay £6000 to keep my mothers eyesight. More research at Genentech, who developed the drug, shows that the injections are needed every month, possibly for 24 months or more. That's £48,000. One trial was done that gave patients one injection a month for three months - that got a good percentage of them some sight back, then they gave one injection every three months and they all lost their sight again but stayed stable at their previous level. But the treatment has to continue. I want to ask people who have had this treatment how its been for them, were they aware of the costs if they paid and were they informed of the inevitable loss of gained sight when the injections were decreased. I also want to hear from anyone who has been treated with Macugen and Avastin.

Its a lot to read and I'm sorry but I need to know what's best to do for my Mother before her appointment next week. Thank you

Paula

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4 Replies:

  • Avastin is much more cost effective ($50 US compared to $2000 US for Lucentis) and preliminary data shows it is at least equally effective. Lucentis is a smaller molecule of Avastin and was originally developed as it was thought Avastin would not penetrate the retina. It turns out that is either not true or is unnecessary to achieve an effect.Save your money and go for Avastin. Don't waste your time on Macugen...
    Anonymous 42789 Replies
    • February 28, 2007
    • 03:25 AM
    • 0
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  • Thank you for your reply. Do you have any experience with the use of these drugs? I was coming to the same conclusion but have to find a private doctor in Britain who'll use it. There have been a few that have but the NHS wont use Avastin at all. I have the prescribing information on Lucentis but of course there isn't any for Avastin - I'd feel better if I knew more about it.Paula
    witzend 2 Replies
    • February 28, 2007
    • 08:46 AM
    • 0
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  • In fact if you don't want to post too much information on here you could email me privately at witzend@tesco.net. I really am desperate for information as my Mothers sight is at stake.
    witzend 2 Replies
    • February 28, 2007
    • 08:49 AM
    • 0
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  • In my experience, the drugs appear to be equivalent but there have been no large comparative trials (yet). Avastin is usually given in a 1.25mg injection. There appears to be a small risk of stroke with either Avastin or Lucentis and there are always possible complications any time an injection is made into the eye.In the U.S., Avastin is relatively easy to come by. I believe the preference of some here for Lucentis is mostly medicolegal (Avastin use for AMD is "off-label").Based on an article in the Guardian (http://society.guardian.co.uk/health/story/0,,2013410,00.html), it seems it is harder to get in Britain. From that article, it seems you may need to use Lucentis or go abroad to get Avastin.I hope you find this helpful and wish you and your mother the best of luck.
    Anonymous 42789 Replies Flag this Response
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