Newly diagnosed with Macular Degeneration

Posted by Tracey001 @tracey001, Aug 18, 2011

I just found out that i have Macular Degeneration possibly Macular Dystorphy and I am scared to death. I haven't eaten in three days and I feel a huge sence of hoplessness. I would really like to talk to others who have it and how they are coping

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I’m confused by some of the responses I just want to know if there are any treatments for dry AMD. My doctor wants to give me injections, but I haven’t read anywhere where this is being done for dry AMD.

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@btednes2015

I can understand the confusion. I have dry AMD and the only treatment so far available was vitamins and diet. I developed macular edema which is requiring injections of Avastin. You may have come across mention of Avastin in this thread. These are not related.

However, I am reading of a new drug for dry AMD approved by the FDA called Syfovre which I believe is an injection and is for advanced dry AMD. There is also surgery to implant a telescopic lens for advanced dry AMD. I don’t know what is considered advanced in the dry AMD. This is all too new as far as I am concerned and I will stick with the conservative treatment because, for the past 7 or 8 years it has held stable.

Personally, I wouldn’t rush to have any new drug injections until I had other opinions and an explanation of what they considered advanced. Dry AMD can remain stable for many years and progression can be slowed down with the proper diet…..not sure if vitamins are as effective but I do take one.

Does this sound any clearer? There is so much good information from personal experience but reading too much can muddy the waters sometimes as we are so eager to share what works for us.

FL Mary

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@btednes2015

I am so sorry you have to go through that. May I ask your age and where you live?

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Hi sure
I am 76 and i live in Israel tel Aviv
Usually Avastin is helpful in avoiding worsening

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Oh thank you for that I live in Chicago Il I’m 82. Nice to meet you. I am currently not on any medication taking the vitamins recommended. Just not sure I wanna start injections when I don’t know they will be in any benefit.

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@imallears

@btednes2015

I can understand the confusion. I have dry AMD and the only treatment so far available was vitamins and diet. I developed macular edema which is requiring injections of Avastin. You may have come across mention of Avastin in this thread. These are not related.

However, I am reading of a new drug for dry AMD approved by the FDA called Syfovre which I believe is an injection and is for advanced dry AMD. There is also surgery to implant a telescopic lens for advanced dry AMD. I don’t know what is considered advanced in the dry AMD. This is all too new as far as I am concerned and I will stick with the conservative treatment because, for the past 7 or 8 years it has held stable.

Personally, I wouldn’t rush to have any new drug injections until I had other opinions and an explanation of what they considered advanced. Dry AMD can remain stable for many years and progression can be slowed down with the proper diet…..not sure if vitamins are as effective but I do take one.

Does this sound any clearer? There is so much good information from personal experience but reading too much can muddy the waters sometimes as we are so eager to share what works for us.

FL Mary

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Thank you that is helpful. I am in early stages and do not see any reason to start injections. If it is slow growing I can live with that.

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@btednes2015

Oh thank you for that I live in Chicago Il I’m 82. Nice to meet you. I am currently not on any medication taking the vitamins recommended. Just not sure I wanna start injections when I don’t know they will be in any benefit.

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I think the injection was beneficial

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@imallears

@btednes2015

I can understand the confusion. I have dry AMD and the only treatment so far available was vitamins and diet. I developed macular edema which is requiring injections of Avastin. You may have come across mention of Avastin in this thread. These are not related.

However, I am reading of a new drug for dry AMD approved by the FDA called Syfovre which I believe is an injection and is for advanced dry AMD. There is also surgery to implant a telescopic lens for advanced dry AMD. I don’t know what is considered advanced in the dry AMD. This is all too new as far as I am concerned and I will stick with the conservative treatment because, for the past 7 or 8 years it has held stable.

Personally, I wouldn’t rush to have any new drug injections until I had other opinions and an explanation of what they considered advanced. Dry AMD can remain stable for many years and progression can be slowed down with the proper diet…..not sure if vitamins are as effective but I do take one.

Does this sound any clearer? There is so much good information from personal experience but reading too much can muddy the waters sometimes as we are so eager to share what works for us.

FL Mary

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My understanding is that Syfovre slows down geographic atrophy which is considered advanced dry AMD. Other than that, I don’t believe there are any injections for dry AMD. It’s really up to you and what you are comfortable with. I never thought I could handle injections, but when my dry AMD turned to wet I decided I could. I’m 67 and still working. I believe the injections make that possible for me.

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@cmbg

I agree with you. Wet AMD is another whole ballgame and I am sure I would have agreed to injections for that. My Avastin injections for macular edema in the right eye are not a big deal because the eye is numbed. There is the pressure initially but it is over so quickly and , since having the Injections, vision has remained stable.

My eyes are so precious to me since, because of my profound hearing loss, I very often use my eyes to hear. I am 82…still do computer work for my daughter …use some store magnifiers for close up reading and my 5 year old long range prescription glasses for driving. Last exam vision improved in left eye to 20/20 and small improvement in right eye (had detached retina in that eye in the 1980s). Have also had cataract surgery in 2009. This is a life long eye management and monitoring. I consider my self lucky but I also take care of any problems and eat a eye and ear healthy diet.

Here’s looking at ya kid.

FL Mary

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