Anyone have intermediate Macular Degeneration

Posted by prayingtolucy @prayingtolucy, Feb 12 6:44pm

Hello,
I'm interested in hearing people IMD.
I like reading people's stories, how they deal with it, what they are experiencing and if they've learned of new treatments or cures coming down the pike.
I pray every day that I can grow old while maintaining my good central vision. I pray that I am young enough to one day benefit from more permanent treatments, less invasive treatments, and even a cure. Research has been ongoing for such a long time that sometimes I think there may never be a cure. I will not give up nor will I stop praying.
I hope we can get a chat going here. ❤️

Interested in more discussions like this? Go to the Eye Conditions Support Group.

@sjs1

I would be interested to know how many females are diagnosed with AMD are also on HRT. My MD wants me to take it for the first time at age 75 because of my intermediate dry AMD condition. He says
that estrogen is protective and surely I would not have this condition if I had been on HRT. He is a MD who just practices preventive medicine. He is not a retina doctor. He says it will help with the progression. I haven’t taken it so far because my other MDs take the conventional route. It is not conventionally advised to take low dose estrogen at 75. I think it’s important to know how to ask ChatGPT questions about the supplements other than ARED2 that are helpful. All the retina specialists are just going to give you the routine or conventional take: Take AREDS2 and wait, look at the amsler chart. I found out from “23 and me “ that I have the worst prognosis, thecdouble Y402H alleles in the CFH family from both parents but my AMD did not start in the fifties. My CFH DNA with these mutated alleles have the worst prognosis. I use the off label longevity drug rapa or sirolimus very low dose 5 mg with a MD’s prescription and supervision. It has been 8 to 10 years now still diagnosed with AMD and it’s at the intermediate dry. I use a low vision optometrist for driving glasses. I take more supplements than conventionally advised by a retina soecialist like Mitq foreyes, NMN, NAC, Melatonin etc all found from reading articles on intermediate dry AMD research and from the advice from a science website Admin who also has dry intermediate I haven't been to Wills, Wilmer or Duke, the top eye hospitals near me but I will visit each to introduce myself so tha when the clinical stems cell trials are more frequently conducted I might be considered given my DNA mutations. chstGPT gave me the names of the intermediate dry AMD studies currently underway and the MDs there who are the principle intermediate dry AMD researchers. I use the eyecharger device, a red led 670 hz flashlight used in the mornings for 3 min each eye to stimulate the mitochondria of which ChatGPT approves and this device is the result of the research if Dr Jeffrey at Univ of London neuroscience dept. Of course my retina doctor had never heard of eyecharger although photo modulation is now being researched and may be implemented in clinical settings for intermediate dry AMD. AMD is a disease of mitochondrial dysfunction. Most with AMD disease (like 50 percent) will have a DNA mutation component which causes mitochondrial dysfunction and disruption to the eye’s immune system in those who environmental factors are also present like having being a smoker —but hopefully not the worst scenario like mine. Research ChatGPT found research articles that report that my DNA mutations quickly progress to geographic atrophy. It’s very important to take AREDS2 and see a retina doctor 2x a year. There are subscription devices you can use that are a home monitoring device. You look into them daily and it reports back to monitoring station to gauge if your eyes have changed for the worse. I looked into it - didn't like the bureaucratic management. At my age and for the long time I have been in the intermediate stage I can’t just “wait and see “ for just the FDA approved modalities like those who can who are diagnosed in their fifties,

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My mother had dry AMD which deteriorated very quickly from her diagnosis at age 68. She lived until she was 90, by which time she was suffering from daily hallucinations caused by the AMD related Charles Bonnet Syndrome. I think your doctor's recommendation of HRT may be the very best step you can make, given there is no cure and you want to do everything you can to slow its progression. I know most doctors would not even contemplate prescribing HRT to any women over 60, but that is largely because of the catastrophically misinterpreted Womens Health Initiative report which denied several generations of women access to HRT. I have recently been prescribed HRT for osteoporosis - despite the fact it is now 25 years since I became menopausal (at 41). My doctor admitted that to some degree its unchartered territory so far out from menopause (because all reserach on over 60s stopped after WHI) , but whatever risks there may be, my experience 2 months in is that HRT has already significantly lifted my mood, and noticably improved a range of health conditions I have been struggling with for decades - from over active bladder to severe insomnia. What it will do for my bones remains to be seen.

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Thank you for sharing your experiences. I am following my own a portion of Dr Rozaris’ MD macular program. I didn't go HRT for the first time at age 75 but now supplement with hormones dhea and preglelone. (My personal GP and GYN do not recommend HRT at age 75. ) He believes that the eye is trying to make its own hormones it needs to function because there are none and drusen are just cholesterol deposits and a by product of the lack of hormones. His patients are not on HRT. I got a life extension blood draw to see my levels of these 2 hormones and I am supplementing 25 mg dhea and 10 mg pregleone. I consulted my GYN and she said dhea supplement even high dose no problem but was unsure about preglelone, it’s a pregnancy hormone. Yes. my Mother too passed at 91 and had wet AMD and couldn't drive. Melatonin too is important for RPE health . I supplement 3 mg nightly and my sleep has improved with more dreaming and rem sleep. My sister at age 67 has always been on HRT and has no eye problems. Yes because we have no direction from our retina doctors but AREDs 2 I tried to find more research in hopes of delaying the progression. I found the “macular program “ and so without paying the full price I have copied some his program- the hormonal part. Thank you

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@sjs1

Thank you for sharing your experiences. I am following my own a portion of Dr Rozaris’ MD macular program. I didn't go HRT for the first time at age 75 but now supplement with hormones dhea and preglelone. (My personal GP and GYN do not recommend HRT at age 75. ) He believes that the eye is trying to make its own hormones it needs to function because there are none and drusen are just cholesterol deposits and a by product of the lack of hormones. His patients are not on HRT. I got a life extension blood draw to see my levels of these 2 hormones and I am supplementing 25 mg dhea and 10 mg pregleone. I consulted my GYN and she said dhea supplement even high dose no problem but was unsure about preglelone, it’s a pregnancy hormone. Yes. my Mother too passed at 91 and had wet AMD and couldn't drive. Melatonin too is important for RPE health . I supplement 3 mg nightly and my sleep has improved with more dreaming and rem sleep. My sister at age 67 has always been on HRT and has no eye problems. Yes because we have no direction from our retina doctors but AREDs 2 I tried to find more research in hopes of delaying the progression. I found the “macular program “ and so without paying the full price I have copied some his program- the hormonal part. Thank you

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The macular program :

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@marthadean

I am 84 years old and had never had any eye problems (except cataract removals) and had perfect vision. Two years ago my OD saw a problem and referred me to the Southern Retinal Clinic where the ophthalmologist did numerous tests before starting the injections. I had one set back when I had had an angiogram with omnipaque and almost lost the vision in the eye. All doctors say omnipaque never causes problems but there is nothing else to account for the sudden attack. The injections were changed but have continued and I have excellent vision.
See if you have a Retinal Clinic near you and go to see them

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Living with intermediate dry AMD: If you see a specialist trained low vision optometrist you can get a prescription for glasses that help you with tasks like driving. These glasses can make use of your undamaged areas of your eyes so you see clearer. These are regular framed glasses. I use non prescription foster grants for reading and their lens are much better quality than most you can buy over the counter. I have clip ons that attach to the driving glasses that function like a lens for closer up activities.

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@sjs1

Living with intermediate dry AMD: If you see a specialist trained low vision optometrist you can get a prescription for glasses that help you with tasks like driving. These glasses can make use of your undamaged areas of your eyes so you see clearer. These are regular framed glasses. I use non prescription foster grants for reading and their lens are much better quality than most you can buy over the counter. I have clip ons that attach to the driving glasses that function like a lens for closer up activities.

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Forgo to add the trivex lens are the best , most big box stores only carry polycarbonate and of course anti glare.

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Anything else that can help with dry eyes? I take fish oil and other diet stuff, use preservative-free eye drops, and a heating eye mask, an eyelid cleaner, and sunglasses/hats; eye doctors just say use eye drops. I'm 71 and was also diagnosed with dry AMD in Feb.; the doctor said my druse are a lot worse than last year, even with taking AREDs. I have no risk factors or family history. No symptoms yet, although my very dry eyes are a constant reminder. It felt like a gut punch, in the last year my bone marrow biopsy went into SMM range, I was diagnosed with stage 3a chronic kidney disease (CKD), and still recovering from a bit of long covid from 2 years ago. OK, health not as good, but at least I can read and do woodworking (eye and other protection). I'm now worried about going blind, which hit me harder than the risk of MM ramping up or the CKD. Getting old is not for wimps.

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