Wet Macular Degeneration: What treatment helps you?

Retinal specialists are seeing serious cases of eye inflammation with Beovu. If possible, the other injected medications could be chosen and the patient should be informed of the risks.

I have wet mac diagnosed a few years ago after damage had begun. The retina specialist I was referred to left town. My next retina specialist seemed very good, but he retired. The other specialist in his office continued to give me shots but was stopped dilating the eye, seemed just interested in giving me a shot, not watching my eye health. Then a shot gave me an infection in the eyeball and along with pain, I lost all sight in that eye. Once the infection was stopped there has been a lot of debris in the eyeball that clouded my bad vision. Now much of the infection debris has stuck to the underside of the lens to make a super opaque cataract so no one can see with a scan to the retina. I now need cataract surgery just to treat the wet Mac. Has anyone had successful cataract surgery on an eye with wet macular degeneration? One cataract surgeon refused. I see another before the end of this month.

So sorry to hear of all your bad luck with retinal specialists (and I thought I was disappointed with mine!). I winced when I read your saga of misfortune. As if it weren't bad enough to get this sad diagnosis! (I have wet macular degeneration too as did my mother, who just died at 100 having been blind* for most of the last decades).

Sometimes I wonder what kind of person chooses to specialize in retinas. I have the feeling that a sizable percent are not the most compassionate people.

Wishing you all the best with retaining what sight you have, and also for you to be blessed by finding both a competent and caring retinal doctor and cataract specialist (who CAN take care of your doubly damaged afflicted eye.)

You didn't say but I'm hoping you have one remaining good eye.

XO

My last comment reminded me of a question I'd like to ask you all.
How many of you only have wet macular degeneration in one eye, having had the "fellow* eye* spared.

*Fellow eye" is a professional term for the "other eye". I've been reading as much as I can find on line about prognoses for salvaging one eye (when one has already been irreparably damaged).

A bit of a digression, I recently read about a John Hopkins study (on-going) suggesting up to 33% of nAMD patients can discontinue injections while retaining passable vision within the first years after diagnosis.

Seems to be related to some little known protein molecules distinguishing the lucky patients. The researchers are trying to pinpoint just what they are.

When I start it seems I keep going! Blabbermouth, I'm afraid.

I'm also wishing for feedback in two other areas.
1) I have AFIB (heart rhythm disorder). It occurred to me almost immediately after diagnosis that taking blood thinners couldn't be very good for my already leaky retinal capillaries. (Blood thinners are required for AFIB, to ward off strokes ).

I'm looking into substituting a Watchman Procedure (relatively safe cardiac operation which replaces blood thinners for AFIB patients). It's been really hard to get informed opinions. I thought it would be a snap to get together a retinal specialist and arrhythmia specialist to help me arrive at a cost/benefit decision.
Not so! After numerous consults I've only gotten two retinal specialists who were willing to admit about the added danger of blood thinners (in hastening the progression to blindness). And they weren't willing to consider the benefits of alternate treatments for AFIB - guess they don't want to be held responsible for someone having a stroke.

Anyhow, I finally found an experienced cardiac surgeon willing to go ahead with it but living alone - two sons on opposite coasts while I'm in PA - I don't have help. (And that's not the only surgery I need requiring considerable travel and help! 🙁 )

2) Also wondering about retinal thinning. How are you nAMD patients progressing in that regard? My bad eye's retina is worsening primarily owing to that on-going thinning. (Not sure about the other one - my doctor is always in such a rush, I can scarcely get any info from him apart from whether or not there's new fluid under my retina.)

FWIW I've only had three injections of Lucentis right after my diagnosis two years ago, followed by check-ups at best every six months! Anybody else been treated this way?

I was changed from lucentis to a generic boozivis. Not sure of spelling. Terrible decision by Dr. changed Dr and am now on Eylea. Was much better but now am experiencing eye aching and pain.

I liked Lucentis but my doc stopped it also. I am on Cimini now and I don't think it works as well.

@ivona
When you say you cleared up (and SO clear) and continue to see doctor "every few months", that you have (specifically, you wrote, "HAD" ) wet. macular degeneration I wonder just what you mean.

Do you mean you continue to get injections (when you go)? That is, you get injections even if/though your retinas are no longer wet (leaking)?

Or do you just get a check up?

Also, I'm confused by your description of your experience as you didn't name the drugs in question (in the thread title).

What drug were you taking when you were "almost cleared up" and which one made you worse? In your initial post (July 2020) you say you didn't get back to your original clarity, but later you wrote

You said you couldn't get back to your previous good results. Which meds figure in your experiences? In your initial post (you issue your initial complaint in the thread title - that you couldn't get back your initial good results), but later, say you achieved 20/22 in both eyes. That was all with two (at that time) years of AVASTIN?
(How is your vision now and from what treatment from your most recefnt post?)

Do you mean you actually had wet AMD (leaking, and presumably with blinding/damage resulting) in both eyes as late as May '20), then got THAT clear - 20/22 - in May/'22 ? Were you still diagnosed with WET macular degeneration then and are you still being treated (at whatever intervals) with Avastin?

I didn't know such a diagnosis could be reversed.

I was dxed with wet AMD in my right eye four years ago, and though it's no longer leaking with fluid, it's still dxed as "wet". (I assumed that was because it IS still damaged and COULD again begin to leak and/or develop fluid behind the retina.) Also, the “bad” right eye still sees “wavily” though there’s no active leaking.

(Note the left eye never leaked though it's a bit blurry despite only being dxed with some dry AMD)

Could you please clarify your AMD "journey" re names meds,
timetable of diagnoses and injections?

My retinal guy gave me three injections (one/month) for three months starting with the dx four years ago, and thereafter nothing, including no more injections.

All three were Lucentis.
My eyes are still somewhat blurry (and light sensitive) , the right markedly so, ever since the first dx when I noticed the undulating waviness - classic symptom. (I'm really only seeing at all clearly in the Left eye.)

I never see the doctor for more than ten - fifteen minutes while he examines my latest eye chart results and the results of my test for retinal fluid, scheduling appointments every six months (though more frequently if I complain of apparent worsening).

I always wonder if he's somewhat too casual, seeing me so infrequently and with no injections. (And always Lucentis).

Also never repeating the more complex test I was given for my initial diagnosis (sorry forgetting name) – tech injects dye to follow it through eye vasculature, requires me to be absolutely still. (OCT? FFA?)

@newyorknill
Is it Eylea that's causing the aching and pain? What does your doctor say about it? How did you do on Lucentis and why did he change it?
@mikaylarenee99
How long have you been on Cimini?

Lucentis was great but it must have come off patent or something. Been on the Cimini for the last 4 or 5 injections. I go monthly. Next Tuesday will be #70. Your whole life must revolve around getting a timely eye shot. But it keeps us seeing.