Hi all,
First off, to anyone reading this I often end up here at DEZ when I am having an especially hard time coping with DES, and maybe you do too, so don't forget that you're not alone and things will get better and we are here for each other!
I have been doing my own personal research on Refresh Optive MEGA-3 PF since I read the back of the box. It contains an inactive ingredient that is a controversial food preservative that has possible links to cancer, even though it has antioxidant properties. My main concern is that the product seems to be mislabeled, and I'm not supposed to use products with preservatives, this says it's PF, but contains a food preservative. So I am going to get to the bottom of this! I like to read journal papers on eye products before using them, and I couldn't find one that said a single thing about this food preservative being used in an eye product. Please let me know if you find one out there.
Knowledge is power so I just wanted to let other users know what I find as I learn things and what it is like to try and get this kind of information.
I personally was getting a lot of relief from this product, but I need to know if it is safe for long term, repeated daily use, so I called the number on the back of the box to find out more. This product says on the front that it is preservative free, but it contains a pretty well known and controversial food preservative used to prevent oil spoilage. SO because I like this product (besides the misleading information) I am making sure it is actually safe for use the way patients with MGD use it. I am a biologist and chemist and I do independent drug discovery and suffer from MGD, and limbal staining from cell death from an unknown source. I suffer daily and I want to use my background to make sure these products are actually safe, and that we are treated as patients and not consumers, and that we have the right information. SO here is what I got from Allergan (the company that makes Refresh products):
Update on Refresh Optive MEGA-3 containing BHT: Tracy from Allergan says she has never been asked about the inactive ingredient 'BHT' and had to escalate my question to higher ups; a little concerning that there is not a straight answer.
She said the product came out in July of last year which is why it says "new" on the box. I asked if Allergan knew about whether it was safe for long term use every 3 hours and how much research was done etc., but didn't get a lot of answers. The short version of what I was told is: a lot of doctors tell their patients to use it....
My main problem with this answer is A: my doctors have me experiment with OTC eye drops until I find one that feels like it helps and put in my file that I use 'artificial tears', not exactly medical advice and B: that my own doctor, whom I've seen for over a year for debilitating pain and limbal cell death (of unknown origin) has made me feel like a guinea pig, even when it comes to FDA approved prescription drugs, like Lotemax: I am supposed to rub 1 drop into each eyelid once daily before bed... my pharmacist never heard of this before... and said since I have a history of responding badly to BAC I shouldn't use it because my eye pressure can remain high for an entire month until my follow up, which is not good. So I never started my Lotemax because the version without BAC isn't covered and is too expensive for me..
My point is that many of the products, procedures etc. our doctors tell us to use for this disease can be experimental and destructive, or OTC, or not really regulated/not considered medical products/more symptom management.
i.e. most of us use OTC drops everyday all day with no end in sight, cool compresses for pain.. and drop overuse is common and ....ultimately patients aren't treated as patients.
Because my last eye appointment went so poorly (my doctor left the room in the middle of examining me, TWICE, forgot to use anesthesia before inserting punctals, (I never had so many reaction tears streaming down my face in my life), he couldn't fit the right punctal plug in and I had to keep my eye open while he jammed it in, also notes from my previous visit were missing, and I waited 5 hours in the waiting room and missed half a day at work, you get the idea... I'm never going to an appointment alone again and you probably shouldn't either) I currently have taken much more initiative in researching drugs/preservatives used for DES into my own hands and have been seeking advice from DEZ (thanks for all your input/feedback/advice/articles!);
So the fact that doctors 'prescribe' this new product to patients doesn't make me feel better. A lot of doctors throw their hands up and don't know what to do with us in the first place. Also, I found from doing my own digging that MEGA-3 is in stage 4 clinical trials, which do not have long term results and seem to rely solely on consumers (us) to report side effects to the FDA, and our doctors are supposed to report our side effects to the FDA as well, not likely for me since my file lists "artificial tears"... So I'm still feeling like a test subject...
So, this might still be a great product IF the BHT is explained to be safe/at safe levels/tested for use in eyes etc.... we'll see! I hope I'm missing something here and it's actually safe to use.
I should get a call back in a couple days with more information. Tracy does not have any information on how much BHT is in the product or why it is there, so far Allergan is not really giving me a lot of confidence in their product. I'll update when I hear more!
See my link on butylated hydroxyl toluene (BHT) use in food. If I come across a link about it's use in eyes I will add a post later on, so far there's nothing.
If you want to call Allergan yourself and let them know your concerns, their number on the box is 800-678-1605
First off, to anyone reading this I often end up here at DEZ when I am having an especially hard time coping with DES, and maybe you do too, so don't forget that you're not alone and things will get better and we are here for each other!
I have been doing my own personal research on Refresh Optive MEGA-3 PF since I read the back of the box. It contains an inactive ingredient that is a controversial food preservative that has possible links to cancer, even though it has antioxidant properties. My main concern is that the product seems to be mislabeled, and I'm not supposed to use products with preservatives, this says it's PF, but contains a food preservative. So I am going to get to the bottom of this! I like to read journal papers on eye products before using them, and I couldn't find one that said a single thing about this food preservative being used in an eye product. Please let me know if you find one out there.
Knowledge is power so I just wanted to let other users know what I find as I learn things and what it is like to try and get this kind of information.
I personally was getting a lot of relief from this product, but I need to know if it is safe for long term, repeated daily use, so I called the number on the back of the box to find out more. This product says on the front that it is preservative free, but it contains a pretty well known and controversial food preservative used to prevent oil spoilage. SO because I like this product (besides the misleading information) I am making sure it is actually safe for use the way patients with MGD use it. I am a biologist and chemist and I do independent drug discovery and suffer from MGD, and limbal staining from cell death from an unknown source. I suffer daily and I want to use my background to make sure these products are actually safe, and that we are treated as patients and not consumers, and that we have the right information. SO here is what I got from Allergan (the company that makes Refresh products):
Update on Refresh Optive MEGA-3 containing BHT: Tracy from Allergan says she has never been asked about the inactive ingredient 'BHT' and had to escalate my question to higher ups; a little concerning that there is not a straight answer.
She said the product came out in July of last year which is why it says "new" on the box. I asked if Allergan knew about whether it was safe for long term use every 3 hours and how much research was done etc., but didn't get a lot of answers. The short version of what I was told is: a lot of doctors tell their patients to use it....
My main problem with this answer is A: my doctors have me experiment with OTC eye drops until I find one that feels like it helps and put in my file that I use 'artificial tears', not exactly medical advice and B: that my own doctor, whom I've seen for over a year for debilitating pain and limbal cell death (of unknown origin) has made me feel like a guinea pig, even when it comes to FDA approved prescription drugs, like Lotemax: I am supposed to rub 1 drop into each eyelid once daily before bed... my pharmacist never heard of this before... and said since I have a history of responding badly to BAC I shouldn't use it because my eye pressure can remain high for an entire month until my follow up, which is not good. So I never started my Lotemax because the version without BAC isn't covered and is too expensive for me..
My point is that many of the products, procedures etc. our doctors tell us to use for this disease can be experimental and destructive, or OTC, or not really regulated/not considered medical products/more symptom management.
i.e. most of us use OTC drops everyday all day with no end in sight, cool compresses for pain.. and drop overuse is common and ....ultimately patients aren't treated as patients.
Because my last eye appointment went so poorly (my doctor left the room in the middle of examining me, TWICE, forgot to use anesthesia before inserting punctals, (I never had so many reaction tears streaming down my face in my life), he couldn't fit the right punctal plug in and I had to keep my eye open while he jammed it in, also notes from my previous visit were missing, and I waited 5 hours in the waiting room and missed half a day at work, you get the idea... I'm never going to an appointment alone again and you probably shouldn't either) I currently have taken much more initiative in researching drugs/preservatives used for DES into my own hands and have been seeking advice from DEZ (thanks for all your input/feedback/advice/articles!);
So the fact that doctors 'prescribe' this new product to patients doesn't make me feel better. A lot of doctors throw their hands up and don't know what to do with us in the first place. Also, I found from doing my own digging that MEGA-3 is in stage 4 clinical trials, which do not have long term results and seem to rely solely on consumers (us) to report side effects to the FDA, and our doctors are supposed to report our side effects to the FDA as well, not likely for me since my file lists "artificial tears"... So I'm still feeling like a test subject...
So, this might still be a great product IF the BHT is explained to be safe/at safe levels/tested for use in eyes etc.... we'll see! I hope I'm missing something here and it's actually safe to use.
I should get a call back in a couple days with more information. Tracy does not have any information on how much BHT is in the product or why it is there, so far Allergan is not really giving me a lot of confidence in their product. I'll update when I hear more!
See my link on butylated hydroxyl toluene (BHT) use in food. If I come across a link about it's use in eyes I will add a post later on, so far there's nothing.
If you want to call Allergan yourself and let them know your concerns, their number on the box is 800-678-1605
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