Hello guys. Today was poke day as I call it :). Did the acuity test, OCT scan and then Avastin shots in both eyes. I'll go back in 5 weeks for review and more action. Both of my eyes have edema now. Sucks but I will keep at it. Good eye left one read 20/40 and not so good eye right one read 20/30. Macular thickness for left eye was 450 and 351 for the right one. Has anyone had such hight numbers with macular edema and was resolved with Avastin shots and vision got better a bit ?
Any experience and thoughts are appreciated. Thank you all.
Hat tip JAEI on Stocktwits, who pointed out a review article in Pharmaceutics that was just published today saying among other things that Biocryst’s drug BCX4161, a cousin of already-approved berotralstat known as avoralstat, could be successfully injected into the eyes of rabbits and sustain high levels two orders of magnitude in the retina vs. the vitreous humor for the whole 3 months of the study, indicating that it could be extremely helpful for the treatment of diabetic macular edema, a disease that almost everyone knows someone with, as it’s the most common cause of blindness in diabetics. The treatment market is estimated at about $4 billion for it, but therapies are fairly bad. The review article can be downloaded here. https://res.mdpi.com/d_attachment/pharmaceutics/pharmaceutics-13-00288/article_deploy/pharmaceutics-13-00288.pdf
Even more interestingly, the review referenced a paper for its source material on this Biocryst drug, that of Muya, L. Pharmacokinetics and Ocular Tolerability of suprachoroidal BCX4161 suspension, a selective plasma kallikrein inhibitor, in rabbits. Invest. Ophthalmol. Vis. Sci. 2021. This article must have just been accepted, as it is not even listed on the website or on PubMed, and seems to have been authored by at least one of the review article writers (Leroy Muya). I will share more information on this when I see it.
Note that the authors are from Clearside Biomedical, the company that Biocryst successfully recently co-patented the injection method for this treatment.
Apologies for length - I used to work as a writer, but I can’t edit my own work to save my soul.
Two weeks ago I noticed a very very slight grey spot in my vision when I was feeding my son his night bottle in the dark (with a nightlight on). It was a Wednesday. I forgot about it the next day and didn’t notice anything that reminded me - until I saw the same thing that night. I set an alarm on my phone to call the eye doctor the next day, but it was a Friday and it snowed - I called my usual Opthalmologist and two other offices, but everyone was closed. And a holiday weekend. I left messages at all three offices, and when I woke up on Tuesday morning, I had messages from all three. I didn’t think it could be too big a problem, since it’s one small spot and I have had great A1Cs for the last 5.5 years (though was a diabetic mess before that. I can’t change the past, but the first 8-9 years of diagnosis I didn’t do what I needed, and didn’t have health insurance).
I saw the Opthalmologist, and it didn’t go well, but I still had hope that further tests might show it wasn’t that bad. My husband went with me for my three appointments with the eye surgeon yesterday: I have severe non-proliferative diabetic retinopathy and diabetic macular edema. It’s in both eyes, but about to touch my center of vision in my right eye, so much more urgent.
I’m still so stunned. No floaters, no blurriness, no color change. No headaches. Nothing, until that one spot 2 weeks ago. I did have severe preeclampsia when I had my son 19 months ago, and my BP was clocked as high as 218/184 before emergency c-section at 32+6. BP and glucose have been well-controlled since. I guess I stupidly thought that was enough, and now I’m looking at my son’s HUGE grin and wondering if I’ll still get to see it in the future.
I opted for Eylea injections, since that’s good for both the retinopathy and DME. I had my first injection yesterday, and it hurt more than I expected. When I was 14 weeks pregnant, I had to have a cardiac angiogram, and I chose to do it without anesthesia, a sedative, or pain meds. That took 25 minutes. I can handle pain. I’m not saying I can’t handle the eye injection pain, but they numbed it and the pain (and sensation) was still hard for me. I am not a particularly anxious person, but having a needle into my eye was just the absolute limit for me. I can’t believe I’ll be doing this every other week for at least 5 months.
I feel like a failure to my baby boy, and a bur
... keep reading on reddit ➡I'm a med student.
Details:
- Multiple opportunities (In-depth Interviews, Focus Groups and/or Survey)
- From home
Eligibility criteria:
- Adult who has been diagnosed with one of the following conditions:
- prostate cancer
- breast cancer
- diabetic kidney disease (DKD)
- heart failure
- chronic cough
- age-related macular degeneration
- diabetic macular degeneration
- diabetic macular edema
- nonproliferative diabetic retinopathy
- symptoms of menopause
- NOTE: Only patients with verified diagnoses will be considered
- US resident
Receive: $25-$100
I have a bubble in my eye... yaaaaay!
My optometrist says the TRT is probably the cause. They said talk it over with my endocrinologist.
I have an appointment next month.
Has anyone else experienced this?
Did you speak to your endocrinologist?
What was your plan/outcome?
Requirements:
Current diagnosis of diabetic macular edema (DME) by a healthcare provider
Proof of diagnosis will be required to participate
Received at least one intravitreal eye injection
Must be able to attend a meeting via webcam unassisted
Access to a computer with internet access
Fluent English speaker, but does not need to be the primary language
U.S. resident
Details:
60-minute focus group
The Focus group will be held on Friday, February 26th at a TBD time
From home
Receive:
$100
Was diagnosed with both last fall after getting poked in the eyeball and subsequently having wisps of blood floating around it. Ive had 4 laser treatments and dr wants to do more after my recent issue with a bundle of blood vessels floating around in the left eye now.
Currently, right eye is practically useless. Dead zones in central vision. What I can see through it looks like a house of mirrors. Ppl have big bodies with shrunken heads and straight edges are wavy.
Up until Monday, left eye been ok. Got to work and started some work when I felt several pin pricks and then the bundle the veins appeared. Looked like a membrane has been holding them together. After the appeared, my vision went super blurry. I had a heck of a time reading anything.
2 days later and I was able to see my specialist. She sent me home with a note about restrictions for my driving and my performance visual may be limited. She wants me back in 3 weeks to inject me with dye (or attempt to) or drink it if that fails. She wants to laser both eyes again.
I'd be all for it, but 100% of the cost goes towards my $2500 deductible, which hasn't been touched yet. Plus, im still paying down the last 4 laser treatments. She keeps bringing up injections into the eye, but also tells me it's a huge risk that could cause the retinas to detach from the veins "crunching" too quickly. Last thing she wants to do is scrape out the scar tissue in both eyes.
This week has been mentally and emotionally rough on me. Every time something new happens, I feel as though I'm edging closer and closer to enough visual impairment that I cant work or drive. Heck, I cant drive at night now or during bad weather. Dr said DMV would have even tighter restrictions if they checked my sight.
I try to explain what I see (or dont) to other ppl and most look like I'm blowing smoke or think that it will go away. Currently, my boss thinks that the bundle of veins in my left eye will go away in a couple weeks, lol! Note from Dr says weeks to months.
I think what scares me more than anything is going blind alone. Sure, I have family, but I fly solo and in my late 30's (m). I wouldn't be opposed to a support group, just haven't found one yet.
In closing, I hope there are others who can provide some level of support, im gonna need it.
I'm not really sure why I'm posting here, I suppose it's because I feel a bit hopeless. What I'm hoping for from this post is potentially a better understanding of what is happening with my eye.
About 4 years ago (35 M) I noticed a slight blurriness in my left eye that after a few months seemed to get worse. I made an optometrist appointment (I had never seen an eye dr before, no glasses or contacts) after bouncing me around a bit he referred me to a retina specialist. I saw this doctor for about a year, he diagnosed me with macular edema and treated me with two intravitreal injections (I do not know off hand what medicine was injected) over the course of that year. He never really explained or had a theory of why I had macular edema, he asked me many times if I had any trauma to the face or eye, which I did not. Each injection made my vision slightly better, certainly not back to normal but better. But each injection after 4-6 months wore off and I was right back to where I started. I got frustrated as there really wasn't an explanation of why this was happening nor was there a plan explained to me. So after 1 year I stopped going, which I now realize was stupid.
About a year later, I decided I needed to deal with this eye situation. The edema has continued to get worse so I researched and found the best retinal specialist in my area. I have now been seeing him regularly for 2 years. Over the course of two years he has done 4 intravitreal injections as well as referred me to two different optic nerve specialists (he suspected MS or some other nerve disorder.) Both optic nerve specialist saw no signs of nerve issues and said only there was some drusen ( I do not have a clear understanding of what this is.) At this point I've now developed a cataract due to the injections and I feel like I'm no closer to figuring out why this is occurring.
Any thoughts? Based on my understanding there is usually an underlying cause for macular edema. I'm 35 healthy, no other medical issues.
Hey Optometrists! For starters, I am NOT asking for medical advice! I saw an optometrist in the middle of last month because my right eye had developed a blindspot, creating a sort of telescoping effect. Upon seeing a retinal specialist a few days later, I was diagnosed with a Macular Edema. I am 32 years old, not a diabetic, do not have macular degeneration, and did not receive any trauma to the eye, and do not have a tumor. My retinal specialist said that this was HIGHLY unusual for someone of my age and history, and that it is likely simply an unfortunate genetic issue, but that the treatment option was the same as if I had any of the prior ailments; specifically, use Avastin intravitreal injections. I of course took his advice and received the injection that day. Ever since I have been trying to meticulously note any changes in my vision, but have seen none. Is this normal? Does anyone have any links to studies that specifically talk about Avastin for treatment of macular edema? Anyone have any anecdotal evidence of what recovery might look like? I was told that if this had happened even just 10 years ago I would have been totally fucked and would likely just have gone blind in that eye, but also that even with this current treatment I only have a 50/50 shot at restoring my vision.
Obviously this sucks, the telescoping effect makes seeing normally difficult, especially reading and distinguishing things lined up together. However, if I can get my hands on some research regarding this topic I can at least have a little peace of mind knowing what my chances of recovery are. Thanks for any help!
I have recently enrolled in a month-long, in-patient clinical trial. The trial begins mid-november and will involve being a test subject for phase 1 trials on a new DME treatment. I am not diabetic, nor do I know much about the condition. I am hoping this community might be able to give me a better idea as to the potential health risks involved in taking part in this particular study.
If there is a better community to reach out to for answers on this please let me know.
Thank you!
