Slow degradation of my vision. Seeing a retina specialist

Still having eye problems. The last few days, sometimes I see a purple smudge on things. Like the leaves of a houseplant may look purple or something like that. I saw my eye doctor Wednesday but she had nothing new to offer. I see her again in Dec. i am considering seeing another doctor. Just wondering about this odd purple business.

It’s most interesting to me that you had laser treatment for floaters and, although it seems somewhat later, developed retinal bleeding. I had laser treatments in both eyes for a film that formed over my eyes that interfered with my vision. The right eye was treated first and I noted that the treatment in that eye was longer and more intense than the treatment applied to the left eye. Shortly after the right-eye treatment, I was examined by my ophthalmologist and sent for consultation with a retinal specialist who detected retinal bleeding and scheduled an angiogram and subsequent eye injections(which I have undergone approximately every 6 weeks for the last 2 1/2 yrs). The condition was diagnosed as age-related wet macular degeneration; however, I did not have any retinal problems in either eye prior to the laser treatment. Although the possible causal connection between the laser treatment and the diagnosis probably cannot be proven, I find it relevant that you seem to have experienced something quite similar. The injections, although unpleasant, apparently have stabilized my condition and seem to be preventing further deterioration.

I’m sorry that you have had this problem as it is a serious condition. Fortunately there is treatment. I wish you all the best.

Darby, I'm very interested in your schedule of injections - something I've consulted three retinologists about. Also done lots of research about (reviewing many clinical trials comparing the effectiveness of frequency of injections and with what injection chemicals).

I've been told by all three, that yes (wonderfully), current research demonstrates that the injections are indubitably helpful in halting loss of vision and possibly even somewhat improving acuity. (That's by drying up and preventing the further growth of abnormal capillaries whose leakage causes the death of retinal cells by irreversible scarring).

They also agree, however, if the leakage is not ongoing, there is no utility in continuing injections. If it resumes (becomes "wet" again, to any degree), then yes, it's useful - indeed vital - to return to injections until the capillaries dry up again.

Do I understand you continued to receive eye injections (of the anti-VEGF chemicals) to prevent regrowth of the abnormal capillaries, even while they were not ACTIVELY leaking the combination of blood and toxic fluids?

Where did you receive your injections and have you ever asked your physician the basis of his/her injection protocol? Is it their intention to continue injections indefinitely and if so, at what intervals? Have they been using the same anti-VEGF chemical the whole time, and if so, which? (If not, what combination of chemicals?)

I'd really like to know about this as I've done a huge amount of study and had consults about precisely this question.

I've received three injections of Lucentis at one month intervals (right eye only) which discontinued the leakage and stabilized . Since then, I've received no more injections, nor does he intend to resume any unless leakage becomes active again. (I'm to carefully check my vision - daily - for any changes by using a diagram called an AMSLER grid. If there's any deterioration, I'm to see him immediately for him to evaluate my eyes for a possible return of the toxic fluids into - and/or beneath - my retina.)

That WOULD call for repeat injections . That is, "wet" macular degeneration. (The wet or most advanced stage of macular degeneration, is the only kind amenable to successful injection treatment.)

A top retinologist in PA , one at John Hopkin's and another highly respected retinologist-researcher at a teaching hospital (I found her from intensive online research), all agreed about this approach.

Otherwise stated, they say, there is NO utility in injecting eyes prophylactically (one or both, as affected). If the "wet" condition remains stable (dry) - if there's no repeat leaking/fluid beneath the retina - no injections. They call this the "treat and extend" approach, the goal being to avoid unnecessary injections which among other drawbacks, runs the risk of causing infection capable of permanently destroying vision in that whole eye.

Please compare your doctor's approach and if possible, who and where they practice? (In a PM if preferred, for privacy)

Thank you!

PS I'd also much appreciate input about the same question from any of you receiving anti-VEGF injections for wet macular degeneration.

Thank you for your comment and description which you have thoroughly researched. I’d like to clarify my treatment. I do indeed have wet macular degeneration for which I have received injections. Generally I have a series of a total of 3 injections, spaced 6 weeks apart. At the end of these 3 injections, I am thoroughly evaluated for the need for further treatment. Additionally, at each visit I receive an eye exam, eye pressure check and evaluation of any changes in my vision and health status. My retina is routinely scanned. While my condition has stabilized and improved over time, I have not yet progressed to the point of not needing the injections to preserve my vision. All of this relates to my right eye only; so far my left eye shows no signs of deteriorating conditions. My retinal specialist is well-regarded and I live in an area where high quality medical care is readily available. Fortunately, I have good health insurance that covers these treatments.

I also take Preservision Areds 2 twice daily. It’s certainly a good idea to monitor your vision on a daily basis by using an Amsler Grid; it seems that it would be especially important if there is a significant hiatus in treatment and appointments.

I was particularly interested in the posting of the party who mentioned laser treatment for floaters prior to the development of her problem. I, too, received laser treatment for a film that developed over my eye and shortly thereafter, the wet macular degeneration was detected. Prior to that, I had an eye exam every 6months
during which my retina was thoroughly examined.

Thank you for your interest in my comments and condition. I appreciate your attention and your very valuable information; I know that anyone who reads your post will benefit from your extensive knowledge and experience. I wish you continued good health.

Thank you very much for your detailed response to my comments about advice I've gotten from specialists re whether to indefinitely receive injections in an eye(s) affected with wet macular degeneration. (Also for your very kind remarks about the utility of my sharing!)

Perhaps I've gotten lost in our extensive exchange of details so that I am not understanding the basic answer to my question about indications for continuing injections. (And chances are it wasn't easy to "tease out" my question because I wrote in excessive detail!)

I'll try again. I DID understand that your doctors did a detailed evaluation of your affected right (same as me!) eye at your check-up interval - that is, after three injections taking three months in all. (They certainly are thorough!)

However, do I understand that you are continuing to receive injections in your right eye just as a precaution even if it is NOT showing symptoms of wet macular degeneration? That is, more leakage from the abnormal capillaries (and on-going scarring, probably including fluid beneath the macula)?

I AM confused! I have been told the antiVEGF injections are only useful if ones macular degeneration is still "wet". If not, what symptoms are your doctors using to justify the continued injections in your right eye?

I've been trying to research if there are different injection rationales apart from active leakage. Specifically, do some doctors give injections "prophylactically - to ward off new leakage even if your right eye has dried up?

I read about various clinical trials comparing when antiVEGF injections are given, and outcomes from using different ones. One thing that stood out, was that the researchers all commented that in "real life practice", patients were UNDERTREATED!
That is, patients in the trials received more injections and/or other treatments.

Naturally, I don't want to permanently lose more vision because of under-treatment. It sounds like "treat and extend" is under-treating.

Could you please compare your doctors' injection reasons with mine? Do they inject even if your right eye has stabilized (isn't actively "wet")?

Thank you! Hope my question is clearer this time.
(How many injections have you gotten so far, and in what period of treatment?)
How has your vision progressed? (Worse, the same, better?)

I am not receiving prophylactic injections and such injections would not be administered. I receive injections because I do have active, ongoing wet macular degeneration which is verified through retinal scanning on a consistent basis. My retina specialist has never indicated that injections should be administered prophylactically. I hope this answers your questions, if not, just let me know and I’ll try to rephrase my explanation.

Best Regards

Many, many thanks, darby.
That cleared up quite a lot for me.
Wishing you continued positive response to your injections and stable eye health.

Wouldn't it be great if they finally come up with an actual cure? Of course, we're already very fortunate they've come up with the antiVEGF injections which are so effective. There used to be no way to treat wet macular degeneration.

Just encountering this message, I wanted to express my sorrow at your beloved brother's death (a few years ago, but I'm sure his loss will be forever felt).

I am hoping your retinal problems have improved. I have wet macular degeneration myself, so far only damaging the vision in my right eye. (As I'm sure you know this condition is caused by leakage of blood and toxic fluids from tiny abnormal capillaries behind and/or in the retina. They develop in some people, with heredity playing a major role).

Apart from Lucentis injections (only three, each a month apart) I have gotten no treatment. However, I have done considerable research on prognostic indicators about whether the condition is apt to pass to the "fellow eye" as they call it.

It appears there are promising signs that in certain people, with particular characteristics (no or small "drusen" - tiny cholesterol like particles - other drusen which are broader and soft, and lastly patients who manage to avoid high blood pressure).

What's more, a recent study reveals that as many as 1/3 sufferers can discontinue injections - the exact mechanism protecting them is not yet identified (certain proteins identify which are affected). This study was done at John Hopkin's. The more time passes, the more such promising information comes to light.

Unfortunately, there is as yet no way to be one such protected patient but at least it's encouraging to learn about this hopeful sign. What has been considered not only incurable but inevitable ( to eventually blind both eyes) seems to have exceptions.

May you be such a one! Even dry macular degeneration has breakthroughs on the horizon,
through the use of stem cells. ("Omni-type" stem cells are being primed to turn into retinal cells which can be transplanted to replace dead cells - thus far, some years to come to market but one more promising development.

Meanwhile, you are in my prayers that your vision will continue optimally, that your other health issues remain stable and that you are supported in coping by other family and friends. I'm glad that you are protected by the quality of your physicians (where I am, a rural area which is medically underserved, lower lifespans result from our sub-par
physicians and more limited equipment). Considering the role dry eyes are playing, you might want to consult a corneal specialist if you haven't yet.

May you thrive and benefit from medical breakthroughs in all areas affecting you!

I’ve been getting injections for almost three years. They have kept my eye stabile.

We tried expanding the interval of my injections to 10 weeks but the activity in the retina increased so we are back to 6-7 weeks. I don’t know if this would be seen as prophylactic- I think of it as a maintenance dose.

It has been over time and using OCT every three injectIons or so that we’ve been able to establish the response my eye has to treatment.

I also have geographic atrophy so my vision is slowly degrading. The key word being slowly.

Best of luck! I don’t like getting injections but I do like being able to optimize the vision. I do have.

Many thanks for more helpful information.

I'm concerned about whether my eyes can be protected at carefully diagnosed intervals (right now it's called " extended intervals""). As I understand it, that means I won't get more injections until leakage recurs as examination indicates (by OCT). What worries me is that such a wait and see approach, would mean permanent damage would have to occur (from the leakage) before they notice it!

Have your injections been determined only after more fluid (under the retina) has shown up at a check up? Or do you yourself call it to their attention based on your noticing reduced vision (for example through noticing more waviness/fuzziness using the Amsler Grid?)

I'm afraid it I wait until they notice reduced clarity, at an OCT exam, permanent damage will already have occurred ( leakage causes irreversible scarring),

Could you please indicate when and why your doctors decide to give you injections? Also, are one or both eyes leaking?

I believe geographic atrophy is a term applied to dry macular macular degeneration, which is not helped by injections. How (if at all) do they treat it?

OCT checkups look for new fluid collection in or under the retina, but without the more detailed imaging through Fluorescein angiography (do you have that test too?)

Also (sorry for the number of questions), where are you being treated? As I mentioned, my area is medically underserved, if anything especially in retinal expertise? I wonder if I am at risk by having too few injections.

Best of luck in your eyes maintaining their visual acuity! This wait and see procedure is nerve-wracking but there seems to be considerable variation in how patients respond.