3 months off of th AREDS 2 and I’m getting my life back. My docs were baffled as to why I was so sick. I had chronic diatrrhea a dehydration requiring several visits to the ER, lots of tests, colonoscopy, possible SIBO… sigh.
Ran across this thread when I was doing a search for side effects. What an eye- opener. Maybe there shold be a black box warning!
@cjval52
AREDS2 contains drug-level doses of zinc: 80 mg zinc oxide is pharmacologic, not nutritional
It can cause nausea, diarrhea, and copper deficiency. Most people don’t tolerate 80 mg zinc long term Yet AREDS2 is given out casually, as if it were multivitamin.
@cjval52
AREDS2 contains drug-level doses of zinc: 80 mg zinc oxide is pharmacologic, not nutritional
It can cause nausea, diarrhea, and copper deficiency. Most people don’t tolerate 80 mg zinc long term Yet AREDS2 is given out casually, as if it were multivitamin.
@sjs1 I am planning to try and contact an investigative journalist to get the word out. I lost a year and a half of my life due to this. And I’m 73…. Not a lot of time left!!!
@sjs1 I am planning to try and contact an investigative journalist to get the word out. I lost a year and a half of my life due to this. And I’m 73…. Not a lot of time left!!!
@cjval52
Okay, Areds2 is a supplement not a drug and there are no warnings on the bottle. Apparently since it's only a supplement and it is not FDA inspected or regulated it is not required to have warnings. Your retina doctor is not going to make a connection between the supplement and your side-effects. You just talk about your eyes there you didn't bring your side effects up to the retina doctor or make the connection between the supplement and your side effects until now - one year later . Your GP normally just wants to know what meds you are taking and supplements don't usually come up. The clinical study found some people did not tolerate it well and had gastric trouble but not the majority. It is not traced to any other side effects at all or major diseases like cancer. An investigative journalist wouldn't be useful here. I hope your AMD disease didn't progress. I have been taking areds2 without zinc and if you dont want to ever take Areds again take lutein and eye vitamins by themselves and maybe the antioxidant astaxanthin. AREDs did have beta carotene in it and they took it out because there is a
lung cancer connection.
@cjval52
Okay, Areds2 is a supplement not a drug and there are no warnings on the bottle. Apparently since it's only a supplement and it is not FDA inspected or regulated it is not required to have warnings. Your retina doctor is not going to make a connection between the supplement and your side-effects. You just talk about your eyes there you didn't bring your side effects up to the retina doctor or make the connection between the supplement and your side effects until now - one year later . Your GP normally just wants to know what meds you are taking and supplements don't usually come up. The clinical study found some people did not tolerate it well and had gastric trouble but not the majority. It is not traced to any other side effects at all or major diseases like cancer. An investigative journalist wouldn't be useful here. I hope your AMD disease didn't progress. I have been taking areds2 without zinc and if you dont want to ever take Areds again take lutein and eye vitamins by themselves and maybe the antioxidant astaxanthin. AREDs did have beta carotene in it and they took it out because there is a
lung cancer connection.
@eyak1950
Just to help clarify:
The medication you mentioned , tacrolimus, is an immunosuppressant used after major organ transplants (most often kidney or liver) to prevent rejection of the transplanted organ. Because tacrolimus suppresses the immune system, transplant patients routinely undergo cancer screenings regardless of what supplements they take.
This is separate from AREDS2.
There is no evidence that the medical community has found AREDS2—with or without zinc—causes cancer. The monitoring you described would be related to long-term immunosuppression, not to the AREDS2 formula or the switch to a zinc-free version. No cancer warnings on Areds2 bottles like on a package of cigarettes because there has been no evidence it is linked to cancer.
In my case with the CFH gene with double Y alleles the zinc in the original formula can cause me to advance to GA or advanced AMD quicker some studies have shown. The CFH gene regulates inflammation which contributes to my AMD. Well the medical community is just not really sure about genes and AMD quite yet and there are conflicting results in the research articles and opinions so no DNA testing is performed on AMD patients when prescribed AREDS2. The original AREDS involved no DNA testing. Later peer reviewed studies showed the zinc in AREDS is harmful if the subject had the CFH double Y alleles. However the AREDS2 committee reviewed the newer subsequent DNA study evidence and determined it was inconclusive- so no duty to warn.
I was upset that this expensive supplement had been prescribed to me without any reservations to its ingredients whatsoever. It only helps 25 percent of intermediate AMD patients by only slowing down the disease progression for a few years.
@sjs1 I started on areds 2 nearly 10 years ago AMD diagnosis. I had no side effects and there seemed to be no noticeable progression of AMD. However 5 + years ago I was fortunate to get a kidney transplant after a 5 year wait on dialysis. The transplant team examined the supplements I took and there was no recommendation for change. However as I was doing research on the web concerning areds 2 I came across 3 interesting issues concerning its high level of zinc. 1. That taking areds 2 for a long period of time that even though it contains high copper additive , copper deficiency can occur. 2. That a areds 2 without zinc supplement maybe just as effective. 3. That through my experience can be highly deferments to yout health because zinc can drop suddenly and does not always return to normal levels while leaving copper levels also low. So invariably continued supplementation is needed. These low levels can play havoc with many systems in your body as well as the adrenal system and possibly result with tumors which my medical team is evaluating. Since I take tacrolimus for my transplant and zinc has tendency to alter the efficiency of that drug there is also concern as to how any change in zinc supplementation will affect that treatment. So again emphasize the need for expansion of caution labeling on the product. This product has definitely shortened my life span.
@sjs1 I started on areds 2 nearly 10 years ago AMD diagnosis. I had no side effects and there seemed to be no noticeable progression of AMD. However 5 + years ago I was fortunate to get a kidney transplant after a 5 year wait on dialysis. The transplant team examined the supplements I took and there was no recommendation for change. However as I was doing research on the web concerning areds 2 I came across 3 interesting issues concerning its high level of zinc. 1. That taking areds 2 for a long period of time that even though it contains high copper additive , copper deficiency can occur. 2. That a areds 2 without zinc supplement maybe just as effective. 3. That through my experience can be highly deferments to yout health because zinc can drop suddenly and does not always return to normal levels while leaving copper levels also low. So invariably continued supplementation is needed. These low levels can play havoc with many systems in your body as well as the adrenal system and possibly result with tumors which my medical team is evaluating. Since I take tacrolimus for my transplant and zinc has tendency to alter the efficiency of that drug there is also concern as to how any change in zinc supplementation will affect that treatment. So again emphasize the need for expansion of caution labeling on the product. This product has definitely shortened my life span.
@eyak1950
You have had a rough time, follow through with your no zinc AREDS if your retina doctor agrees. Ask your kidney Doctor about your immune suppressing med, make sure you are taking the right dosage. Report all med side effects to them.
The information on AREDS and AREDS2 comes from the NIH-sponsored clinical trials (AREDS 2001 and AREDS2 2013). In both studies, the only consistent side effects were gastrointestinal, mostly related to the high zinc dose. No cancer or systemic illness signal has appeared in the data or follow-up reviews.
If anyone wants official guidance, the National Eye Institute (NEI) at NIH can be contacted for AREDS/AREDS2 information. Patients can also report personal reactions to the FDA’s MedWatch program, and ophthalmologists often follow guidance from the American Academy of Ophthalmology (AAO).
For educational support about AREDS and macular degeneration, the Brighthouse Foundation online (formerly Macular Degeneration Foundation) answers patient questions and summarizes AMD research in plain language. I've emailed them in the past with questions and they responded.
@eyak1950
You have had a rough time, follow through with your no zinc AREDS if your retina doctor agrees. Ask your kidney Doctor about your immune suppressing med, make sure you are taking the right dosage. Report all med side effects to them.
The information on AREDS and AREDS2 comes from the NIH-sponsored clinical trials (AREDS 2001 and AREDS2 2013). In both studies, the only consistent side effects were gastrointestinal, mostly related to the high zinc dose. No cancer or systemic illness signal has appeared in the data or follow-up reviews.
If anyone wants official guidance, the National Eye Institute (NEI) at NIH can be contacted for AREDS/AREDS2 information. Patients can also report personal reactions to the FDA’s MedWatch program, and ophthalmologists often follow guidance from the American Academy of Ophthalmology (AAO).
For educational support about AREDS and macular degeneration, the Brighthouse Foundation online (formerly Macular Degeneration Foundation) answers patient questions and summarizes AMD research in plain language. I've emailed them in the past with questions and they responded.
@sjs1 will follow up on your suggested contacts. Have contacted aaoc before for an incompetent doctor but with some professional agencies they often concentrate on protecting their. As a teacher oi have seem that happen time and again. So it's with many professional communities and organizations that depend on outside monetary support from the professionals or businesses they are supposed to regulate. In government it happens consistently. Bit sometimes you contact one that has a sense of right and wrong. I aways give it a try in hopes I will contact one of them.
BTW. I filed a complaint with the FDA. Suggest you all do the same.
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1 Reaction@cjval52
AREDS2 contains drug-level doses of zinc: 80 mg zinc oxide is pharmacologic, not nutritional
It can cause nausea, diarrhea, and copper deficiency. Most people don’t tolerate 80 mg zinc long term Yet AREDS2 is given out casually, as if it were multivitamin.
I was advised to take MacuHealth which has no zinc.
@sjs1 I am planning to try and contact an investigative journalist to get the word out. I lost a year and a half of my life due to this. And I’m 73…. Not a lot of time left!!!
@cjval52
Okay, Areds2 is a supplement not a drug and there are no warnings on the bottle. Apparently since it's only a supplement and it is not FDA inspected or regulated it is not required to have warnings. Your retina doctor is not going to make a connection between the supplement and your side-effects. You just talk about your eyes there you didn't bring your side effects up to the retina doctor or make the connection between the supplement and your side effects until now - one year later . Your GP normally just wants to know what meds you are taking and supplements don't usually come up. The clinical study found some people did not tolerate it well and had gastric trouble but not the majority. It is not traced to any other side effects at all or major diseases like cancer. An investigative journalist wouldn't be useful here. I hope your AMD disease didn't progress. I have been taking areds2 without zinc and if you dont want to ever take Areds again take lutein and eye vitamins by themselves and maybe the antioxidant astaxanthin. AREDs did have beta carotene in it and they took it out because there is a
lung cancer connection.
Thus the attempt to get an investigative journalist involved. The snake oils need to be regulated lije any other med.
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1 Reaction@sjs1 I started on areds 2 nearly 10 years ago AMD diagnosis. I had no side effects and there seemed to be no noticeable progression of AMD. However 5 + years ago I was fortunate to get a kidney transplant after a 5 year wait on dialysis. The transplant team examined the supplements I took and there was no recommendation for change. However as I was doing research on the web concerning areds 2 I came across 3 interesting issues concerning its high level of zinc. 1. That taking areds 2 for a long period of time that even though it contains high copper additive , copper deficiency can occur. 2. That a areds 2 without zinc supplement maybe just as effective. 3. That through my experience can be highly deferments to yout health because zinc can drop suddenly and does not always return to normal levels while leaving copper levels also low. So invariably continued supplementation is needed. These low levels can play havoc with many systems in your body as well as the adrenal system and possibly result with tumors which my medical team is evaluating. Since I take tacrolimus for my transplant and zinc has tendency to alter the efficiency of that drug there is also concern as to how any change in zinc supplementation will affect that treatment. So again emphasize the need for expansion of caution labeling on the product. This product has definitely shortened my life span.
@eyak1950
You have had a rough time, follow through with your no zinc AREDS if your retina doctor agrees. Ask your kidney Doctor about your immune suppressing med, make sure you are taking the right dosage. Report all med side effects to them.
The information on AREDS and AREDS2 comes from the NIH-sponsored clinical trials (AREDS 2001 and AREDS2 2013). In both studies, the only consistent side effects were gastrointestinal, mostly related to the high zinc dose. No cancer or systemic illness signal has appeared in the data or follow-up reviews.
If anyone wants official guidance, the National Eye Institute (NEI) at NIH can be contacted for AREDS/AREDS2 information. Patients can also report personal reactions to the FDA’s MedWatch program, and ophthalmologists often follow guidance from the American Academy of Ophthalmology (AAO).
For educational support about AREDS and macular degeneration, the Brighthouse Foundation online (formerly Macular Degeneration Foundation) answers patient questions and summarizes AMD research in plain language. I've emailed them in the past with questions and they responded.
@sjs1 will follow up on your suggested contacts. Have contacted aaoc before for an incompetent doctor but with some professional agencies they often concentrate on protecting their. As a teacher oi have seem that happen time and again. So it's with many professional communities and organizations that depend on outside monetary support from the professionals or businesses they are supposed to regulate. In government it happens consistently. Bit sometimes you contact one that has a sense of right and wrong. I aways give it a try in hopes I will contact one of them.
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1 ReactionI am not willing to risk my sight to find out if the vitamins work.