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Hey folks, I've been inactive for a while since I'm seeing fewer posts on this forum these days. I hope that means folks with severe dry eye are getting the answers they need from their doctors, or otherwise finding good info elsewhere!
Since I originally posted my story in 2020, my symptoms have been pretty stable. Dry eye is still very much a part of my life, but as long as I keep up with treatments and good eye care habits, my symptoms have been relatively manageable. I highly doubt I will ever be "cured" but things are definitely better now than I ever thought possible when I originally got my diagnosis. That's part of why I've been less active on this forum. I think it's good for anyone browsing here to have a reminder that there is a massive amount of selection bias at work in the data you are exposed to about dry eye outcomes, since the patients who get better tend to disappear.
I've found two additional things that gave me incremental improvements on top of where I was: Tempsure RF treatments, and the Regener-eyes drops. But I mainly want to talk about Regener-eyes after seeing the additional attention on it recently.
In early 2021, I moved to a new city and started seeing a new optometrist. This optometrist recommended Regener-eyes lite (the milder, non refrigerated product) to me. I did due diligence on the product, and frankly, from what I could find online, the marketing struck me as very sketchy and not science based. I thought it was a huge red flag that their marketing used an anecdotal case of a patient who supposedly showed regrowth of truncated MGD glands after using the product. I am very skeptical that this actually happened. However, after educating myself as much as possible about the product and the tradeoffs, I made an informed decision to try it, with full knowledge that there was a possibility I would suffer lasting and permanent harm, or other side effects due to some defect in the product. I decided to try it because I believe in the potential of biologic products to help a variety of conditions, and because I am very wiling to take a risk in order to improve my dry eye symptoms. I felt like I was also taking a risk when I tried IPL and Lipiflow for the first time, from a financial as well as safety perspective.
I did not believe the Regener-eyes drops would help, but after about a month of using them, I did experience a noticeable decrease in watering and irritation, especially when outside in windy conditions. I cannot scientifically separate the effect of the drops from the effect of the other treatments I'm doing, but my symptoms had plateaued prior to introducing these drops. After an additional two months of using them, I felt like the beneficial effect had increased. I still use the drops as part of my regular routine, and I still find them helpful. I have experienced no perceptible or clinical downside or adverse events from using these drops, and I do notice that my symptoms worsen after a few days if I stop using them, back to what I perceive is roughly the level my symptoms were at prior to introducing the drops.
In addition, my mother suffers from mild dry eye; she started using Regener-eyes lite about six months ago, and has also found the product helpful. This is in addition to the anecdotal evidence from the two optometrists at the dry eye practice I go to-- they prescribe these drops to other patients besides myself-- I asked them both if any patients prior to me had experienced adverse effects from the drops. They said no.
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TLDR: is the Regener-eyes marketing incredibly sketchy and unscientific? ABSOLUTELY. But the Regener-eyes lite drops genuinely helped me and I rely on them to get through the work day. I would be happy to testify in court that these drops have helped me. They are also a lot more affordable than Restasis and Xiidra.
I do hope that anyone who experiences adverse effects from these drops is able to share that information so patients can make their own choices. In general I support cracking down on unscientific marketing. But patients like myself and my mom also deserve to have the choice over what risks we want to accept. I am worried that if the dry eye community brings the FDA down on Regener-eyes, they will just shut down the company entirely, and patients like me will lose access to a treatment we find helpful.
Since I originally posted my story in 2020, my symptoms have been pretty stable. Dry eye is still very much a part of my life, but as long as I keep up with treatments and good eye care habits, my symptoms have been relatively manageable. I highly doubt I will ever be "cured" but things are definitely better now than I ever thought possible when I originally got my diagnosis. That's part of why I've been less active on this forum. I think it's good for anyone browsing here to have a reminder that there is a massive amount of selection bias at work in the data you are exposed to about dry eye outcomes, since the patients who get better tend to disappear.
I've found two additional things that gave me incremental improvements on top of where I was: Tempsure RF treatments, and the Regener-eyes drops. But I mainly want to talk about Regener-eyes after seeing the additional attention on it recently.
In early 2021, I moved to a new city and started seeing a new optometrist. This optometrist recommended Regener-eyes lite (the milder, non refrigerated product) to me. I did due diligence on the product, and frankly, from what I could find online, the marketing struck me as very sketchy and not science based. I thought it was a huge red flag that their marketing used an anecdotal case of a patient who supposedly showed regrowth of truncated MGD glands after using the product. I am very skeptical that this actually happened. However, after educating myself as much as possible about the product and the tradeoffs, I made an informed decision to try it, with full knowledge that there was a possibility I would suffer lasting and permanent harm, or other side effects due to some defect in the product. I decided to try it because I believe in the potential of biologic products to help a variety of conditions, and because I am very wiling to take a risk in order to improve my dry eye symptoms. I felt like I was also taking a risk when I tried IPL and Lipiflow for the first time, from a financial as well as safety perspective.
I did not believe the Regener-eyes drops would help, but after about a month of using them, I did experience a noticeable decrease in watering and irritation, especially when outside in windy conditions. I cannot scientifically separate the effect of the drops from the effect of the other treatments I'm doing, but my symptoms had plateaued prior to introducing these drops. After an additional two months of using them, I felt like the beneficial effect had increased. I still use the drops as part of my regular routine, and I still find them helpful. I have experienced no perceptible or clinical downside or adverse events from using these drops, and I do notice that my symptoms worsen after a few days if I stop using them, back to what I perceive is roughly the level my symptoms were at prior to introducing the drops.
In addition, my mother suffers from mild dry eye; she started using Regener-eyes lite about six months ago, and has also found the product helpful. This is in addition to the anecdotal evidence from the two optometrists at the dry eye practice I go to-- they prescribe these drops to other patients besides myself-- I asked them both if any patients prior to me had experienced adverse effects from the drops. They said no.
-
TLDR: is the Regener-eyes marketing incredibly sketchy and unscientific? ABSOLUTELY. But the Regener-eyes lite drops genuinely helped me and I rely on them to get through the work day. I would be happy to testify in court that these drops have helped me. They are also a lot more affordable than Restasis and Xiidra.
I do hope that anyone who experiences adverse effects from these drops is able to share that information so patients can make their own choices. In general I support cracking down on unscientific marketing. But patients like myself and my mom also deserve to have the choice over what risks we want to accept. I am worried that if the dry eye community brings the FDA down on Regener-eyes, they will just shut down the company entirely, and patients like me will lose access to a treatment we find helpful.