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