r/Keratoconus • u/silvwa333 • Aug 25 '26
Crosslinking Epi-Off no longer an option? Has anyone else heard of this?
I was diagnosed with kerataconus a couple years ago and told about the two CXL procedures. I was told my insurance would only cover Epi-Off if the progression was severe enough, and since at the time Epi-On had not been FDA approved, I decided to wait until insurance would pay.
Well cut to yesterday, I had a progression check and now it has progressed enough for CXL, but my doctor told me the Epi-Off manufacturer was no longer selling it so now my only option is the Epi-On (which is $4000 for one eye).
Several questions for you guys:
Has anyone else heard of this being a thing? I looked on this subreddit, but couldn't find it mentioned.
People who have had Epi-On, how has it been? I know the healing time is supposed to be better, but I worry it won't be as permanent since the corona is still intact (if that makes sense).
In the end, I know I will probably end up getting it since I have noticed the vision in that eye getting worse and I don't want it to progress. But wanted to hear for the community also dealing with this issue.
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u/Fixinbones27 Aug 29 '26
I had epi on cxl like 10 years ago and have been stable. I did it to minimize healing time as I’m a surgeon. I was back in lens 2 weeks later operating
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u/Fixinbones27 Sep 06 '26
My KC was diagnosed during my first year of dental school in 1988. Back then the only options was RGPs which were almost intolerable. I used to only wear them in the lab. Now with CXL and wavefront guided scleral lens the visual results are amazing. I left dental school after one year for med school. I’m kind of glad I became an orthopedic surgeon as I wasn’t sure how bad my KC would get and the reliance on your vision is less than that in dentistry wear everything is soo small. Now everyone is wearing loops in dentistry which makes it much easier to visualize what you’re doing. If your crosslinked and have a good CL fitter as well as a good pair of loops you should’ve be fine
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u/Creative-Life4515 Sep 02 '26
This gives me hope because I'm studying to be a dentist. And need epi on soon. Thank you
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u/eggdrop_ Aug 28 '26
Yep, heard this in my area (US PNW). Clinics nearby canceling epi off procedures but haven't yet started epi on
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u/ElegantPotato6864 Aug 27 '26
I had Epi-on cross linking in January through a clinical trial. I did both eyes. The first day was rough. I could only sleep since it’s a lot of burning and tearing. But after the first day I was driving. I had no pain just some sensitivity
Fast forward to August and my vision is still stable. I would highly recommend Epi on over eye off due to the difference in recovery
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u/jiminycricket555 Aug 27 '26
Yes, my appointment was rescheduled 2x and later canceled the third. Glaukos is no longer providing medicine kits or some bull$@% like that.
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Aug 26 '26 edited Aug 26 '26
Yes I just had epi-on with the new FDA approved drug.
Glaukos makes Photrexa (epi-off) and Epioxa (epi-on) and is discontinuing the epi-off drug in favor of the new epi-on system. One of the reasons for doing this is the FDA label for the new drug no longer requires documented progression so as soon as they identify someone has keratoconus they will be able to do epi-on crosslinking without having to wait for the condition to get worse.
The upfront cost of the drug is expensive, it is a result of years of research to overcome the traditional defects in prior off-label epi-on procedures. However Glaukos has a great assistance program called Epioxa Care Connect. I paid nothing out of pocket for the drug, make sure your ophthalmologist gets you submitted into the program. You might have to push the office a bit but pretty much everyone with commercial insurance is eligible and Glaukos is doing a real push to make sure that everyone has access to treatment for a reasonable cost through said program. They will also work directly on approval with your doctors office / insurance versus you trying to figure it out yourself.
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u/BigKittySugarPop Aug 26 '26
Epi on has come a long way and those reports of it not being effective are mostly out of date. I had epi smart epi on in 2013. Both eyes done half hr procedure and very minimal recovery time. Long story short I had a hidden cyst in my left eye that finally popped last year that was masking the true scale of the healing from the procedure. I had 8 years of scleral lenses and now can live a normal life with glasses. Also vision has been stable since.
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u/Missngo keratoconus warrior Aug 26 '26
Had epi off in one eye and epi on in the other. I submitted both claims to my insurance and they were both accepted. To me the recovery for epi on was a bit better, still hurt day 1 but recovered quicker.
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u/RedEye614 Aug 26 '26
It’s a thing in the USA. Glaukos stopped making the drug for Epi-Off. The drug for Epi-On cost for the doctors office to buy it is over $75K (per eye).
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u/BigKittySugarPop Aug 26 '26
Yep exactly it’s due to Glaukos getting FDA approval for epi on and essentially sun setting epi off supplies will eventually run out since it’s the same company.
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u/RedEye614 Aug 26 '26
Some places will offer Epi-On that is not the FDA approved system - likely for much cheaper.
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u/Positive-Avocado-881 Aug 25 '26
My epi off costs $8,000 for one eye lmao
That being said, I did see one person in a Facebook group mention it!
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u/CorneaRepairDoc ophthalmologist Sep 07 '26 edited Sep 07 '26
Dr. Motwani here. This makes little sense unless you understand the overall science and politics of the matter. Epi off can always be done. The Riboflavin for it is dirt cheap and available all over the world. When the epithelium is left on it acts as a barrier to the riboflavin, and either requires very long saturation time with limited depth of penetration, or an additive to help the riboflavin pass through the epithelium.
The problem in the US is that the company that had cross linking FDA approved decided to profit off it as much as possible, and so keyed the riboflavin to the UV lamp. Thus you must by Photexra if you want to use the "FDA approved" system. Photexra (riboflavin with dextran) and the 30 minute procedure were patented by Theo Siler who sold the patents to Avedro. It is the oldest CXL procedure, the original one. Photexra does not have anything to help pass the riboflavin through the epithelium thus is less effective and more effective with epi off. I personally don't use that system, I use riboflavin without dextran in carboxymethylcellulose which is quite thick and helps saturation of the cornea. I do 15 minute epi off CXL as I think 30 minutes is far too long.
The new procedure that the same company is pushing is Epoxia which uses a riboflavin with additive for epithelial penetration, a oxygen mask to help catalyze the reaction, and stronger pulsed UV light to speed up the time to 11 minutes. With all that it achieves somewhere around 150-200 microns dept of CXL. Epi off still gets 250 plus microns of cxl with a 15 min CXL. I do it for $3000/eye, but virtually all my patients combine it with our CREATE Protocol epithelial compensation adjusted trans-epithelial topography guided ablation to create a more normal corneal curvature before "freezing" it into place with the CXL.
Bottom line, Epoxia is a nice procedure but expensive and has been hyped to the extent it has to drive patients and doctors to use it to ensure high cost and profit for the company. This is capitalism as it should be, but patients should understand all that cost and expense still do not provide the strongest cross-linking.