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Some bad news. (remember "rods and cones"?)
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Minor Deity
Picture of Amanda
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PS I HAVE been exercising most of my life almost daily with lapses (mostly aerobic) an hour at a time. Home stairstepper is not as good as it has been, though, and Planet Fitness, while excellent, is imperfect in some ways. (I fall too often thanks to spinal problem and - worse, foot drop). Still, I always feel great afterwards.

Walking requires walking sticks for me and is risky in Winter. This house isn't really suitable for adequate walking. (I rely on watching videos for stair-stepper so as not to be excessively bored.)

At least, I know I haven't been remiss in regards to exercise. It's amazing how vital it is in retaining almost all functions - cardiac (hence aerobic), anti-Alzheimer's, endorphins, bone density, pretty much everything...

Would never have thought it helped retinas (they thin with age), but glad to know I didn't worsen my situation by giving into what would otherwise be dangerous sedentary existence. So maybe I AM just giving myself expensive pee with AREDS2?

Healthy eating is important too - I've backslid there. Ever since I dropped off the KETO wagon after getting CDIFF I've been addicted to yogurt and my favorite pita. Must get back to it (and knock off excess pounds - I don't even weigh lately).

I read about the new implant device (to minimize injections) though without name. Sounds good. I'm wondering if the "treatment burden" it's supposed to alleviate cost ($1500/shot) or inconvenience or other.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of wtg
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As far as treatment burden, I don't know about cost (it probably reduces it), but part of it may be related to the challenges that many face in getting to monthly appointments. And if they don't get the medication on a regular basis, control of the condition is suboptimal.

And as you noted, there's not having to have injections as frequently.

Sounds like you've been moving! That's a great thing. Keep it up.

And I hear you on winter walking. Sounds like you have alternatives, which is great.


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Outrage is warranted. But outrage unaccompanied by analysis is a danger in itself.

Bazootiehead-in-training



 
Posts: 33244 | Location: Somewhere in the middle | Registered: 19 January 2010Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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I'm lucky my insurance pays for the injections, but it's killing the Medicare budget. That certainly counts too, besides which it's a major problem for those left with significant out of pocket.

Every retinological clinic hires one or several financial hirees whose job is two-fold: checking whether new patients' insurance will pay for their treatments, and if not, what subsidies they may qualify for.

There are a LOT of articles online for ophthalmologists written by specialized MBAs, about the ethical and financial aspects of treatments and running clinics, focused on the risks that turned up over time re the business angle of these treatments. Apparently at first, they were just thrilled to finally find a treatment for what had been a hopelessly blinding condition. Only over time did they realize the hard way, how much their clinics were at risk of ending up with major losses because of patients whose insurance (if any) weren't covering the full cost.

I'm wondering how much their decisions on frequency of injections these days are a function of the patient's finances. (They are NOT always given monthly). Also, Avastin (the original shot, still only used off-label) is often given instead of other, newer choices. I don't think it's the most effective, though, but it's MUCH cheaper - at least, now.

Reading about side effects of the anti-VEGF medicine, that it raises blood pressure - sometimes so much, the patient is disallowed from taking the shots. Oops, having read the links more carefully (they're at least ten years old), I see that warning, seems to only pertain to oncological use of this medicine class - I guess, as a chemotherapeutic agent. They were first mostly used to fight cancer, because as one might expect, cancer metastasis depends on the expansion of blood circulation to support neoplasms. No wonder Avastin was and is primarily used against cancer. The stroke of genius of my mother's ophthalmologist, was being the first to think of using it against wet macular degeneration (off-label, injected directly into the eye). My mother's good fortune was landing in his practice - and it serves as a telling lesson in the importance of seeking out the most expert specialists available, when suffering from a catastrophic illness.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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Excuse me for this tangential discussion about my problem, but perhaps others may find it interesting from the POV of comparative treatment availability in other countries. Also, how expensive Public Policies are determined.

I was horrified (long before it became a personal issue) to learn that the British medical system refused to administer Avastin to patients with wet macular degeneration until they had already gone blind in one eye. What a horrible scenario!

This was only modified so that they were eligible for treatment of a first affected eye (my situation) once the British public raised a hue and cry demanding a more compassionate approach. Finally, patients were spared unnecessarily earlier blindness. It's horrible to imagine how they must have suffered waiting until their first affected eye became completely blind, to have the second eye treated. Only then did they have a prayer of preserving vision for however long, in their one remaining eye. So much for those who generalize about the relative merits of the British medical care compared to that in the US! The details of how they triage treatments for catastrophic conditions can be hair-raising when studied, especially for those affected and those compassionate enough to empathize with them.

I wonder how such standards (using the "QALI" system) are applied overall both there and here. The wet AMD policy only struck a nerve with the British public once it was so widely publicized they were able to force the policy board to relent.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of Daniel
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Amanda, I'm sorry to hear this.
 
Posts: 23138 | Registered: 31 March 2007Reply With QuoteReport This Post
"The nation’s floundering government is now administered by a gangster regime."

George Will
Minor Deity
Picture of Piano*Dad
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quote:
It's horrible to imagine how they must have suffered waiting until their first affected eye became completely blind, to have the second eye treated.


I would have thought that the degeneration was at least partially simultaneous, as in the "good eye" didn't sit there waiting to begin going bad until the "bad eye" had completely died. Waiting to treat the second eye until complete blindness in the first eye would reduce the effectiveness of the treatment in the second eye. Hue and cry indeed.
 
Posts: 11178 | Location: Williamsburg, VA | Registered: 19 July 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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The wet form of AMD is preceded by the dry (no leakage from abnormal capillaries.). Only 10% of sufferers go on to develop the wet kind. In its early stages (gradual death of unreplaced macular cells) it may only cause minimal vision loss though it too can be blinding late on.

Usually, both eyes begin by developing dry AMD, but only one begins with the wet kind too (my situation).

Only the wet kind is amenable to treatment through the anti-VEGF injections, starting with Avastin.

In any case, yes, it's true as PD supposes that both eyes are simultaneously affected but one that's "only" dry can often see quite well (thus frequently missing the diagnosis). The progression of AMD can be quite uneven, though.

I'm guessing the British treatment board initially held off on injections in a "wet" eye until it was pretty far gone without reference to how the pt's dry kind was progressing. Or even whether the less affected eye had begun to develop early signs of the abnormal capillaries.

Bottom line is injections should be begun as soon as any level of leakage has begun in either eye, regardless of what's going on in the other eye, to prolong period of sightedness. I assume this is what they're now doing (and - hopefully - with the newer, better antiVEGF formulations. Which are, one recalls, MUCH more expensive.)


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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Actually (trying to locate the original items about what went on in UK re these treatment decisions) considerable contradictory information surfaces.

Several decisions (and court cases). were involved over a period of a decade or so.

The most recent controversy (which might spill over to one in the US) appears to be whether or not the govt. is willing to. provide what is currently considered the superior anti-VEGF treatment (Lucentis or Eylea) to "just anyone". That is, when the original breakthrough treatment (Avastin) is so much cheaper.

And "just as good" (?)

Comparative pricing: Lucentis abt $2000 (not going to try to translate to British pounds), Eylea closer to $2500, while Avastin costs only ~ $30 per injection.

Many studies to determine whether there is really a difference in effectiveness between Avastin and the others, with the expectable players taking the expectable sides.

Namely, bigPharma (in the UK and here) arguing for the much better results for their pricy products - while the govt argues that Avastin is "just as good". That therefore, everyone ought to be satisfied with it (though, naturally, anyone who feels strongly about the superiority of the others, can pay for it - out of pocket, of course.)

The desperate, non-wealthy are fighting for their access (at govt tab) of the better/pricier meds while the govt is fighting them - in favor of Avastin. The public is playing an indeterminate role in the argument, which is highly publicized.

When there's does seem to be a difference in effectiveness, however incremental, even in what is inevitably a disease with no happy ending - no one (INCLUDING ME!) is willing to risk losing that edge.

Diagnostic fine points, including which eye is in what stage of degeneration and even (so it sounds in the UK, unless it's fear mongering) patient age are playing a role in the arguments.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Has Achieved Nirvana
Picture of wtg
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Discussion re Avastin, Lucentis, and Eylea. Plus a fourth, Beovu.

https://www.aao.org/eye-health...-lucentis-difference


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Outrage is warranted. But outrage unaccompanied by analysis is a danger in itself.

Bazootiehead-in-training



 
Posts: 33244 | Location: Somewhere in the middle | Registered: 19 January 2010Reply With QuoteReport This Post
czarina
Has Achieved Nirvana
Picture of piqué
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Amanda, I'm so sorry to hear about your diagnosis. I have a good friend with macular degeneration and when we lived in the same town I often gave her rides, as she could no longer drive.

I do have a suggestion. Because there is no treatment to reverse this process, you may as well try it. Find a naturopath who has a Reiff machine. A friend of mine has one, and he used it on his mother who had macular degeneration. Her eyesight improved so much from the Reiff treatments that she actually worried about what to tell her eye doctor.

My friend suggested she say, "Doctor, I pray a lot."

BTW, the reason my friend bought a Reiff machine (they are $$$$)is because Reiff treatments put his wife's stage 4 breast cancer into remission. She lived 20 years at stage 4.

ETA: Correct spelling is Rife


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fear is the thief of dreams

 
Posts: 20389 | Registered: 18 May 2005Reply With QuoteReport This Post
czarina
Has Achieved Nirvana
Picture of piqué
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Sorry, I spelled it wrong.

How I Became Extremely Open-Minded https://nyti.ms/301UmWE


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fear is the thief of dreams

 
Posts: 20389 | Registered: 18 May 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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wtg, many thanks again. I've read the article and plan to reread it later for the details. Certainly very much more promising with this caveat:

Namely, since wet AMD blindness can progress rapidly, and since the damage, scarring, is irreversible, even what seem the most optimistic scenarios with new treatments are not apt to be available in time to salvage the vision of present-day patients.

(Recall, I'm not speaking of the dry AMD patients whose blindness if at all, progresses much more slowly. Also, whose type AMD is not amenable to these injections anyhow.)

I can only hope my disease holds fast long enough to be helped by one of these promising new treatments.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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The only definite self-help I can come up with (and how to coordinate the expertise is much harder than I had expected) is to substitute an intervention for the oral anticoagulants (AFIB treatment) which MUST be bad news in recurrences of the capillaries leakage. (How NOT?? I bled all over the house after nicking myself microscopically shaving my legs a month ago - they effectively turn me into a hemophiliac).

From what I've read and been told, the best substitute would be something called a "watchman" or Aflit heart surgery, supposedly relatively minor and safe. They amputate a small back end part of the heart which is sort of corrugated, and supposedly where most clots form. Reportedly, prevents most strokes.

(To fill in the dots, AFIB - an arrhythmia - is presently best treated by these newish oral anticoagulants, which are quite effective in preventing clot formation.) Their only drawback is the uncontrolled bleeding they cause, which being deemed too dangerous for some people, leads to their getting other treatments: ablation, laser, pace-maker, or (best) watchman or AFLIT.

Weird thing is that there seems to be little overlapping research about the effect of anticoagulants on wet macular degeneration. That is, I see it clearly online, but haven't found a real live researcher familiar with both conditions.

I need to find a retinalogist who is willing to recommend avoiding the oral meds, on the grounds of the danger they pose to wet AMD.

See, the episodes of irregular heartbeat cause the atria to quiver and (somehow) form clots which kill via heart attacks or strokes. That is, without the blood thinners which prevent the clots from forming (mostly).

But what is that med doing to the fragile capillaries which spring leaks, causing irreperable scarring? I don't see why I'm running into such trouble finding an electrophysiologist who thinks blindness is just as serious a side effect to avoid as internal bleeding elsewhere (Thus far, the only dangerous bleeding I've heard merits substituting for the oral blood thinners is elsewhere. Like G-I.)

This conflict in recommended treatments for these two very different risks is driving me nuts, especially given the unpredictability of a recurrence of retinal bleeding. (All that's certain is that it WILL happen again, even after the retina has dried out and flattened thanks to the injected medicine. What they call "stabilizing" it.)

It's the return leakages and resultant scarring that eventually permanently blind the patient. WHEN it can happen is the great unknown, though. Mad.

Since the eye treatments need to be performed en situ, I can't afford to alienate my present (MDeity) retinalogist by second-guessing him. (His dictum was to resume my Xarelto - the anticoagulant. I'd stopped it after getting the diagnosis. "What! Do you want to have a stroke??")


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
Minor Deity
Picture of Amanda
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Pique, many many thanks to you too for the info on the RIFE machine.

A few questions:

How much is $$$$?

Did your friend's mother whose macular degeneration greatly improved, have the wet or dry kind? How long ago was that and how is she doing now??

Did the RIFE machine have specific settings for breast cancer and macular degeneration? It seems (per NYTimes article) that its success depends greatly on using the just-right setting.

I'm confused at not being able to find an online reference to these machines, re cost or how they might help this eye disease.


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The most dangerous word in the language is "obvious"

 
Posts: 13712 | Location: PA | Registered: 20 April 2005Reply With QuoteReport This Post
czarina
Has Achieved Nirvana
Picture of piqué
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quote:
Originally posted by Amanda:
Pique, many many thanks to you too for the info on the RIFE machine.

A few questions:

How much is $$$$?


I don't know. I just know that it's not something patients buy for themselves. They usually go to a doctor who has one. My naturopath has one here and he has used it to combat my bronchitis and pneumonia.

quote:
Did your friend's mother whose macular degeneration greatly improved, have the wet or dry kind? How long ago was that and how is she doing now??


I don't know which kind she had, but I suspect it doesn't matter. According to my understanding of how Rife machines work, every malady has a frequency it can match. This was several years ago. A couple of years before she died. She was quite elderly.

quote:
Did the RIFE machine have specific settings for breast cancer and macular degeneration? It seems (per NYTimes article) that its success depends greatly on using the just-right setting.


Iirr, there is a manual that specifies the correct frequency for each malady. My naturopath uses his to treat cancer patients all the time.

quote:
I'm confused at not being able to find an online reference to these machines, re cost or how they might help this eye disease.


I'll do some googling for you and see if I can help.


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fear is the thief of dreams

 
Posts: 20389 | Registered: 18 May 2005Reply With QuoteReport This Post
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