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Pigmentary Maculopathy Overview
Pigmentary maculopathy is one of a number of disorders that affect the macula, or the central portion of the retina, which is the light-sensitive portion of the eye. Maculopathy itself can take a number of different forms, depending on the cause. Among those causes is the side effects of a certain prescription medication used to treat rare condition known as interstitial cystitis.
Maculopathy is also known as macular degeneration. The symptoms are a gradual loss of central vision (lateral, or side vision is usually not affected until the condition has reached its final stages). The condition is painless. It normally affects both eyes, but can be present in one eye only. If this is the case, the victim may not notice significant vision loss for some time, as the unaffected eye usually compensates. Progression may be fast or slow, taking several years.
What are the Symptoms of Maculopathy?
Usually, those who suffer from pigmentary maculopathy or another form of macular degeneration notice a dark spot when looking straight ahead that grows and expands over time. There may also be vision distortion, or metamorphopsia, in which objects seem oddly deformed to the viewer. Other symptoms may include hallucinations, such as flashing lights, blurred vision, loss of color and contrast sensitivity, and difficulty in readjusting after exposure to bright light.
Age-related maculopathy is the most common variety. In 90 percent of cases, this is “dry” macular degeneration in which retinal cells simply stop working. The remaining 10 percent of cases are “wet” maculopathy — an overgrowth of blood capillaries that may leak fluid into the retina. There is also what is known as macular pucker, or cellophane maculopathy. This happens when a thin membrane develops over the surface of the retina.
Another form is Doyne Honeycomb Retinal Dystrophy or DHRD, in which small, pale spots multiply over the surface of the retinal, resulting in a honeycomb pattern. This type of maculopathy is genetic.
What About Pigmentary Maculopathy?
This particular variety has been linked to a prescription drug known as Elmiron, which is indicated for interstitial cystitis, also known as painful bladder syndrome. As is the case for wet macular degeneration and DHRD, the victim may develop excess capillaries or develop pigmented spots over the retina.
In 2019, a doctor at the Emory Eye Center in Atlanta, Georgia reported that over the last four years, there had been 10 patients who were experiencing pigmentary maculopathy that had no apparent cause. However, all of the patients had been taking Elmiron at some point.
I’ve Been Prescribed Elmiron. Am I at Risk?
The risk of pigmentary maculopathy appears to increase with the longer someone takes Elmiron. Patients who were diagnosed had been taking Elmiron at dosages of between 200 and 400 milligrams per day for an average of 15 years.
While macular degeneration is usually associated with advanced age, one of the patients at the Emory Eye Center was only 23 when first diagnosed. This does not constitute absolute proof that Elmiron causes pigmentary maculopathy, but evidence of a connection is compelling.
Those who believe that their pigmentary maculopathy was caused by this medication, may qualify to file an Elmiron lawsuit.
13 thoughts onWhat is Pigmentary Maculopathy?
I have been on Elmiron for almost a decade now to treat my IC, and whenever insurance issues left me without this expensive medication, I’d soo. Have a flare and would have to see my urologist for about six weeks of intrabladdar Elmiron & Saline treatment while waiting for the insurance issue to resolve. I don’t know if any problemss I’m having today could stem from my lengthy, UNWARNED use of Elmiron. I have hadnumerous eye problems for, primarily, the last few years. However, when I was in my ealy thirties, I had a severe bilateral infection of MEWDS (Multiple Evanascent White Dot Syndrome). I came through that with nearly 100% of my vision restored, and over time my eyes adjusted—now I no longer “see” those small blind spots. I had cataract surgeries, one pre-Covid and the next in 2021. On New Year’s Eve 2020, I had an ENORMOUS floater in my left eye that appeared to be like an early childhood drawing of either a cat or dog or mouse. I was seen immediately and learned that the vitreous fluid in my eye had separated from the back of my eyeball—though I wasn’t told the other eye had it as well. Then I was also told that I had epithelial basement membrane dystrophy, nd ever symptom that goes along with it. In the last year I had an opthalmac allergic reaction to a biologic I was on for my asthma called Dupixent.
And here I sit with many, though not all, symptoms described—mostly the “other symptoms described in the article above, basically in the last sentence of the first paragraph on symptoms.
But, in addition to those symptoms, I alsohave mild double vision (mostly peripherally, but more and more often it’s also central in my vision). On top of that, I have major problems reading now days because of either the double-vision, coupled with like a veil of blur, centrally, or simply that central “veil of blur” as I refer to it now without double vision making reading a chore for someone with degrees in literature and as someone racticing illuminated calligraphy!
With my myriad health issues, will I need an eye surgeon to examine me for this macular degeneration? This whole experience has beaten me down and left me infuriated at the manufacturer of Elmiron.
Wow! I just got my prescription refilled and not one Mention from pharmacist about an issue. About a year ago I saw movement in side of eye, I reacted but realized was large floaters. I also sometimes have flashing lights in eyes having to pause wherever, shut eyes, and wait
Til it dissipates. For 2 or 3 years I was taking 4 pills a day. I cut down to 1 or 2 due to certain other medical side effects.
My vision has not always been the best anyways, but I’m having more trouble than ever now. It’s been many years since I’ve taken Elmiron and when I was prescribed the medication, I took it 3-4 years. I have not had the money to go to the eye doctor since then. I see flashing, like the flash of a cmera; sometimes dark circles in the middle of what I’m focusing on; I have terrible headaches all of the time and at least 2-3 migraines a week. Could all these symptoms be from the Elmiron I was prescribed? If you would add me please. I would love to talk to an attorney to see what they have to say about it. Thank you so very much.
So it’s been a few years since I’ve taken Elmiron for my IC. But it the only drug that seemed to help my IC flare ups. But I was in that 3% of serious side effects where it was making my hair fall out. So my doctor had me come in a couple times a week during a flare up to have the Elmiron put directly into my bladder with catheter inserted thru my urethra. They would mix the Elmiron in a saline solution put it inside my bladder where I’d have to hold it for 30 mins or as long as possible. I’d come in a couple times a week for like 6 wks. Well I quit taking the Elmiron because I don’t like prescription remedies and wanted to manage my IC without it. To which I’ve had success. I’ve had numerous eye issues over the last 8-10 yrs. never thought it could be related. My vision was pretty bad to begin with since grade school. But the last couple years before I went in for corrective surgery I had several eye infections for no reason and then corneal abrasions and a couple of corneal ulcers. Don’t know if related. Since having had corrective surgery 2 yrs ago. Everything seemed perfect in my world of vision. But I been have a lot of camera flashers and stars and vision coming and going blurry sometimes when I’m reading. Super sensitive to light. My eye color has changed and there are what looks to me like black squiggles inside the color of my eyes. My pupils don’t match in size sometimes. One will be really big and the other small. And then I can see a weird hue inside them. Idk I’m broke and not working from COVID. But if my eye issues could be related to the Elmiron I took for a couple yrs but several years ago, I would like to know about and want something done about this. I’m only 41 and my problems with IC and taking Elmiron Started when I was 26.
I only took elmiron for 3ish yrs. Two yrs ago i was diagnosed with macular degeneration in one eye. I have night blindness and some type of fog floaters. Could the elmiron have caused this only being on it a short time?
I am 47 years old. I took Elmirom for 12 years, but stopped taking it about 2 years ago. My vision has been deteriorating over the last 4 or 5 years. I have astigmatism. This is something I was first diagnosed with about 2 years after beginning elmiron, probably unrelated. However, I noticed over the last few years I can not see well at night, profreesively worsening as time goes on, I have floaters in my vision and I seem to be far sighted in one eye amd near sighted in the other. I also was noticing incorrect light perception, as in i see a shadow or flash of light in peripheal vision without cause. Went to eye dr. He said i have a freckle behind one eye. He gave me c0rrective lenses and said we would keep an eye on the freckle. Interesting the rx for lenses is significantly different than my prior rx. Is this elmiron related or is it contributed to the normal aging process ?
You need to run, don’t walk, to a retina specialist immediately!!!
In 2018, my eye Dr. Noticed a “scar” or something in the back of my eye. A week ago, my new eye Dr. Found something behind both of my eyes. It has been diagnosed as Pigmentary Maculopathy. I am 43 and have been taking Elmiron for almost 14 years.
Thank you for sharing. The TCA Elmiron investigation is open. Please submit your information here.
I have been taking elmiron for 20 years. I had my cataracts out 4 years ago and was diagnosed with age related macular degeneration and glaucoma. I moved 3 years ago and began seeing a new doctor. At this time I learned about elmiron. This new doctor did not have the cutting edge technology to diagnose pigmentary maculopathy. He diagnosed me with glaucoma. Before I went for a second visit my left eye began to hurt then it went blurry and I can not read or see things clearly through that eye. I love to read. I cannot read any longer than 10 minutes. I finally say a retina specialist at The Wills Hospital in Philidelphia. This doctor has not been able to diagnose me. I have all the side effects of pigmentary maculopathy. My eyes are very sensitive to light. I absolutely can’t drive at night. Last week when I was on a trip my eyesight in the right eye went blurry so I could not see to read or drive. The right eye came back the next day. This has actually been happening for at least 6 years. Help, where do I go to find the right doctor. I am willing to travel. I live in southern Jersey.
I have been on Elmiron for at least 15 yrs & I started having vision issues & eye problems out of nowhere approx. 6 yrs in taking the PPS despite being young & healthy. They’ve only worsened & I am devastated reading this knowledge of Elmiron being toxic. I cannot go blind I am still young! I can’t live blind for another 60+ yrs on earth! How DARE the makers not disclose the evidence in early clinical trials of this harm! I ALWAYS sit & read those microscopic drug pamphlets that come w/every new drug & do my due dilgilence to even understand the molecular makeup of every drug I am prescribed. There were NO WARNINGS of eye issues or vision problems. I feel gutted. I used to have 20/20 vision & now have blurred vision, floaters, difficulty reading, adjusting to bright light, pain, dry eyes, like a thin veil or curtain over seing through, etc. the dr. says my eyes light up like a speckled egg when flouriscene? or dye is put in my eyes & sadly, like many others I was likely misdiagnosed or under diagnosed for many years & it not contributed to Elmiron & just unknown how it happened. It’s hard not to panic when you’re talking about going blind & this young w/many decades left b/c of age. My eyes are worsening. I’ve had two panic attacks in the last 24 hours learning of this devastating news of Elmiron causing my eye issues. Nothing else it could be. No hereditary issues or family eye problems on either side & I also had genetic testing done & nothing showed up as far as genes. I also weirdly have blue sclera color pigment changes too. Has anyone else had that as well? This is all just too devastating to handle. The magnitude of this is just overwhelming knowing I’ve been on it that long. Like having severe IC isn’t bad enough, now the medicine for it is going to blind me??! Dear God, have mercy on all of us affected. Life is so unfair but this is clear negligence & betrayal by this drug maker. EYES are pretty important on the list of making sure drugs don’t damage. They failed their duty & obligation to patients. The amount of money, prescriptions, OTC remedies, modalities & devices I’ve had to endure to deal w/my vision issues is astronomical. The suffering since my eye issues is immeasurable. Anyone in my family, Drs can tell. At one point my eye specialist had me on like 12 different drugs/treatment meds trying to help my eye issues that I still take many to this day & they are not cheap. The emotional toll for someone already dealing w/IC & young & losing such quality of life is simply remarkable & truly life changing. Please help us & make this company stop selling this BLINDNESS maker & make them accountable!
I too share your thoughts on this drug and when speaking to the Janssen rep. yesterday I told her the same thing. Put a warning on this medication, as that is the right thing to do for patients. I also have IC and at times it was so bad that I thought it would never end(the pain was more than I could stand), however, lucky for me I was advised early by my urologist to see my retina dr. , so at that time I had only taken 1 90day supply and was able to stop the medication before anything seriously happened to me. In reading over the comments from patients that had a problem with their eyes it seems like they had been taking this med for several years. I guess I will not know for sometime whether I will have a problem. I am writing to the FDA today, as I want a warning on this drug. Take care and I sincerely wish you good health. My urologist suggested an acid free diet and it has helped along with using Prelief if I do eat acid based foods. You may want to try this diet and Prelief can be found at Walgreens. Again, my prayers go out to you. Diana Einwich
My Dr found a spot on my right eye. He thought it was a freakle or mole on the eye. He said that it wasn’t that uncommon. He was just going to watch it. It looks like all the pictures I’m seeing of the pugmentary maculapty. Did your Dr. Tell u t was from the Elmiron? My Dr won’t tell me it was from the Elmiron and my lawyer needs him to say that.