Wet Macular Degeneration: What treatment helps you?

Have taken Eylea shots for 7 yrs and the last 2 I have lost sight after the shot for a short period of time. Is there any help.

Hi @dvanderwal and welcome to Mayo Clinic Connect. You will see that I moved your post to an established conversation about wet macular degeneration. I did this so you can connect with other members like @lvon, @realitytest, @sweede536 @mjj, @pacer3702, @lioness, @heal33, @dsh33782 and @burrkaburrkay

Did you discuss your loss of sight with your ophthalmologist?

Ok it is me. I hung in there but went back to avastin for two years and wow . Both eyes have cleared up. 20/22 vision in both eyes. I only go every couple of months now. I had wet. I am extreamly lucky and I will stay with avastin.

I did and get the feeling that really don't care. Claiming its just normal this has never happened before.

Don't know if this pertains to your saying "the feeling that [they?] really don't care" but I'm very disturbed by different (contradictory) comments I've gotten from different retinal specialists.

I've done a great deal of research about these eye diseases which lead to loss of VA (visual acuity) and the studies purporting to compare outcomes according to type of treatment chemical, intervals administered, and combinations thereof.

Almost all (except Avastin) of the injection chemicals are extremely expensive but these costs, including insurance coverage, make a major difference in doctors' choice of modality. Also (overlapping) how much their offices are at risk of economic loss according to what treatments are used (their practices can lose money if the patient is unable to cover the cost). This business angle and conflict of interest is very little acknowledged.

Practices buy in bulk, billing patients and their insurance more than the actual per patient cost, but, they don't discuss how this factor affects both outcomes and effectiveness ("treatment burden" being little discussed in terms of their choices).

I've encountered many times the important factoid that patients in clinical practice are "under-treated" compared to clinical studies wherein their vision is better preserved by more frequent injections. I'm on the point of going to yet another specialist to protect my vision, by finding one who will help me make the best possible decisions, accounting for their widely varying expertise and honestly dealt with economic factors.

I'm especially struggling to inform myself (and related interventional cardiac surgeons) in order to maximally protect my vision for as long as possible. Sadly, wet macular degeneration is incurable and always ends in blindness but there are major differences in the rate at which it develops. That is much a function of the use of anticoagulant medicines which are used to reduce the risk of stroke from arhythmias.

There are other ways to deal with stroke risk but retinologists are rarely informed about the connection between oral anticoagulants and the retinal bleeding they promote. Even if they are, they don't help patients make the critical cost/benefit decisions in conjunction with relevant cardiac specialists. Alternate treatments to the oral anticoagulants, reduce the risks of those suffering from "wet" macular degeneration (e.g., the Watchman Procedure, which I'm most investigating, can reduce the increase in retinal bleeding aggravated by the oral medicines) Thus, the patient can be protected against stroke caused by abnormal heart rhythms, without the ocular dangers of oral anticoagulants.

Perhaps the frequency of the injections is now too aggressive. Have you discussed that with your doctor?

Bill, did your doctor only give you eye injections in eyes that
were "wet" (i.e. actively leaking)? Or did he also inject an eye that had stabilized - that it is, had stopped leaking?

Having a lot of trouble with mine who has stopped treating my right eye which is not currently "active" saying he will only inject it if it has a recurrence of bleeding.

Seems to me that is too late to protect me from (permanent)
further loss of vision in that eye.

(And what "signs of turning wet" did your left eye show so that your doctor began injecting it too?)

Thank you.

Same question to all of you, please - whether your doctor continues to inject an eye that is not actively bleeding (i.e, prophylactically)?

(At whatever interval)

Hi and thanks for your reply.
The retina doctor in Augusta started injecting the left eye before it started "leaking"...the current doc is doing the same. I think you are correct...if you wait until it hemorrhages, that is too late. I had no symptoms of the left eye going wet, but he pointed out how the scans showed symptoms so we started treating it.
As for the right eye...it started hemorrhaging and the ophthalmologist looking after my vision at the time started treating it with Avastin...later switched to aylea. Hope this helps! Symptoms were the telephone poles along the road were bending in the middle and the white stripe on the edge of the pavement had a wavy look to it.

PS My John's Hopkin's doctor I drove so far (and waited so long) to see turned out to be a dead loss. Arrogant SOB who gave me at most 5 minutes and left me with more questions than I began with. 🙁

Should have read his reviews before accepting to be scheduled with him. Big names are no guarantee of quality.