Hi All,
Great idea to do the survey. There are so few of us that every data point counts. Thanks for organizing and please see my responses below.?
George
SEX MALE - Male FIRST INCIDENT AGE 41 (right eye) SECOND INCIDENT AGE? - 49 (left eye) COMPROMISED DISC CUP RATIO?¨C Yes (both eyes) AFFECTED EYE - first NAION was my right eye (age 41) UNAFFECTED EYE - second NAION was my left eye (age 49) USING OZEMPIC OR SIMILAR - yes. My first NAION in right eye was caused by low BP in the evening. I started a low dose of BP medication and was taking at night (which was incorrect). After 1 week of taking this medication, my NAION occurred. My second NAION in the left eye was caused by Monjourno. I had been using this medication for about 6 months and then the NAION occurred.? HYPERTENSION - YES (it is controlled with a low dose BP medication)? POSSIBLE NOCTURNAL HYPOTENSION - unknown; but I believe that this is occurring. When I had my first NAION, I had started a low dose BP medication which I was taking at night. This was wrong (should have been taking in the morning) and it led to a significantly reduced BP while sleeping (as you know there is a nocturnal or natural diurnal lowering of BP). The medication made it go lower than it should have resulting in NAION.? DIABETES - YES (it is now controlled with insulin and diet); I had started Monjourno 6 months ago but stopped immediately once the NAION occurred.? SLEEP APNOEA - YES; it's not a serious case however, I've been using a CPAP machine to help prevent and further NAIONs as it is considered a risk factor.? CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - NO CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - NO STILL DRIVING YES - YES; I have lost about 35 - 50% vision in both eyes. The loss has been in the inferior nasal / temporal regions. Oddly enough, driving a car is my happy place since my inferior vision is OK to be blurred and what I see through the windshield is generally clear. It's not completely clear and I need to be very careful. The visual challenge is more how I walk up stairs, curbs, see screens, etc. and unfortunately I can only see about half of my wife's and 4 children's faces / bodies when they are close to me. I also get head aches / tired from visual stimulation.?
OTHER?¨C ?I have a couple questions / comments for the group -?
1. Has anyone ever had a second NAION in the same eye? Now that I have had a NAION in both eyes, I am hoping that I will never have another one. My neuron-ophthalmologist claims that there is about a 1% chance of it happening again in the same eye since the original NAION leads to necrotic tissue that widens the small cup to disc ratio (minimizing the crowded disc syndrome / risk). This makes sense to me but I am curious to hear if anyone has had a second NAION in the same eye.
2. Has anyone ever had an issue with flying or scuba diving? I do both alot for work and pleasure. And i haven't stopped after my second NAION. But am worried that these activities my provoke the situation.
3. Has anyone ever experienced ringing in your ear post NAION? About two weeks after my second NAION earlier this week, I started to experience ringing in my ear that is on the same side as my NAION. It has been persistent for about 4 months (even with treatment for sinus infection, etc. I am still waiting for a consult with an hearing specialist so we will see what they say. Any insight from the group if applicable would be greatly appreciated.
4. Lastly, I wanted to share with everyone a couple of potentially hopeful supplemental treatments. I work in Ophthalmic research / product development (ironically) and have several colleagues who suggested the following after my second NAION. 1) take the supplement Nicotinamide (nicotinic amide niacin) 500 mg. It's important to use the brand biophix. For the first 90 days post NAION you can use high doses (3000 mg per day) and then after this period you can drop to 1000 mg per day for maintenance. The purpose of this supplement is that it keeps your ganglion cells on the retina activated / engaged after the optic nerve is compromised. These ganglion cells are responsible for collecting the visual images and then signal to the optic nerve. Since the optic nerve is compromised the ganglion cells are 'freaking out' and dont know what to do with the visual signal. During the healing phase post NAION, it is important to keeps these ganglion cells active since some will die and some will survive over the 6 months post NAION. This supplement helps to improve the survival rate of the ganglion cells. This is what may help to gain vision back. I'm happy to share the publication of my colleague if anyone is interested. There is also another theory about a possible treatment post NAION that may help reduce the swelling of the optic nerve. It is the use of an IOP (intra ocular pressure) lowering agent for glaucoma. Although this medicine is used for glaucoma patients, it may be helpful to reduce the acute swelling / inflammation as a result of the NAION. The idea is that if you reduce the swelling / inflammation, there may be less or shorter optic inflammation resulting is less vision loss. This is definitely an off label use of a glaucoma medication but in our situation, may be worth trying acutely. The medicine is called alphagan (brimonidine). This is something that would be used for about 3 months post NAION and no longer after this time period.?
This forum had been great - I am curious to hear if the members would be interested in a group Zoom call to discuss things live? I'd be happy to organize if there are interested folks. We have so much to learn from one another as this is a very rare condition.?
All the Best,?
George?
THIS WILL BE AN INVALUABLE SURVEY
On Monday, March 17, 2025 at 08:12:09 PM EDT, Tim Elersich <mcgauge@...> wrote:
SECOND INCIDENT AGE? - never COMPROMISED DISC CUP RATIO?¨C Yes UNAFFECTED EYE - no problem USING OZEMPIC OR SIMILAR NO - No POSSIBLE NOCTURNAL HYPOTENSION - unknown? CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No
Tim THIS WILL BE AN INVALUABLE SURVEY On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin=[email protected]> wrote: Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks. On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold=[email protected]> wrote: The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.?
The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic.
I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all:
Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk.
This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders. I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
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American Academy of Ophthalmology and North American Neuro-Ophthalmology Society Issue Advice on Weight Loss Drug and Eye Health
JUL 08, 2024 American Academy of Ophthalmology and North American Neuro-Ophthalmology Society Issue Advice on Weight Loss Drug and Eye Health SAN FRANCISCO?¡ª?A new study suggests patients taking semaglutide ¡ª the active ingredient in Ozempic and Wegovy ¡ª may be at higher risk of developing an eye condition that can cause blindness. Non-arteritic anterior??or NAION, happens when blood flow to the??is blocked, causing sudden, painless loss of vision in one eye.? Here¡¯s what the??and the??want you to know about this study published July 3 in JAMA Ophthalmology: - This is not the type of study that can show the treatment caused NAION. But the careful analysis conducted by the Harvard neuro-ophthalmology research team did identify a potential link between semaglutide treatment and NAION. This intriguing finding should inspire more research that will help clarify if semaglutide does cause NAION.
- Semaglutide was rigorously studied in several randomized, controlled trials worldwide. The U.S. FDA approved semaglutide for medical use in 2017. Many millions of people take this medicine throughout the world. This is the first study to report an association between semaglutide and NAION.
- The subjects in this study were either overweight or obese or had type 2?. People who have diabetes are already at risk of NAION. Other risk factors for NAION include heart disease, history of heart attack, high blood pressure, and sleep apnea.
- All the patients included in the study were seen at the same large eye hospital, which treats most of the region¡¯s NAION patients, making it hard to determine if this association is true of all people taking semaglutide. A postmarketing surveillance study ¨C a type of study that monitors the safety and effectiveness of a product after it has been released to patients ¨C could be helpful in determining if there is a connection between semaglutide and NAION.
Implications for Patients - At this time, we do not recommend that people stop taking semaglutide.
- If you take semaglutide and have a sudden loss of vision, stop taking the drug and see a doctor immediately.
- Is it safe for people who previously had NAION? The study offers no information about people who previously had NAION who then developed it again following a prescription for semaglutide.?
- Should people also be concerned about other diabetes drugs, such as tirzepatide (Zepbound or Mounjaro)? Semaglutide is the only drug investigated in this study.
- Patients should talk with their primary care physician to determine if semaglutide is right for them.?
NAION Symptoms - The people in the study developed NAION symptoms following their first prescription of semaglutide. NAION symptoms include:
- Blurred vision
- Color distortion
- Loss of peripheral vision
- A dark or gray spot in the vision that doesn't move
- Loss of contrast or light sensitivity
- NAION usually happens without any warning. Vision loss can range from mild to severe. Most people don¡¯t feel pain, but it can occur in up to 10 percent of patients. If there is pain, it may be an indication of another cause of vision loss. There is no cure for NAION.
Other Vision Changes Linked to Semaglutide - While the link to NAION is new, the medical community has been aware of other vision changes with semaglutide for some time. Previous studies have shown that semaglutide can cause blurred vision, worsening of??and macular complications. However, this appears to be a temporary side effect that goes away after three or four months.
- How can semaglutide cause temporary vision changes? When the body experiences a change in sugar level, it can affect the shape of the?. This change is what causes blurry vision.
- Could a similar phenomenon be at play in this study? Could the ability of semaglutide to rapidly reduce glucose levels and blood pressure cause NAION and not the drug itself? It¡¯s unknown. Only further research can answer that question.
About the American Academy of OphthalmologyThe American Academy of Ophthalmology is the world¡¯s largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, we protect sight and empower lives by setting the standards for ophthalmic education and advocating for our patients and the public. We innovate and support research to advance our profession and to ensure the delivery of the highest-quality eye care. Our EyeSmart??program provides the public with the most trusted information about eye health. For more information, visit? . About the North American Neuro-Ophthalmology Society?The North American Neuro-Ophthalmology Society (NANOS) is a professional organization of about 700 members who are fully trained ophthalmologists or neurologists. NANOS is dedicated to achieving inclusive excellence in the care of patients with neuro-ophthalmic diseases by the support and promotion of equitable education, research, and the practice of Neuro-Ophthalmology. Visit ??to learn more.
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I do not respond inquiries, unless approved by my N.O. or M.D. Fin.
On Monday, March 17, 2025 at 12:59:09 AM EDT, Terry Berelowitz via groups.io <craigberelowitz@...> wrote:
HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
PLEASE DO ANSWER
THANK YOU
TERRY
MEDICAL SPECIALIST
On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold= [email protected]> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.? The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
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Blood pressure (BP) monitor / Semaglutide and NAION
Helpful recommendation .. get any device that monitors BP.
If, for whatever reason, BP rises .. IMMEDIATELY REPORT TO ED/ER ..
For myself, I dug deep, and got a Apple Watch with cellular. Also has "crash protection" -- in case of call, it calls 9-1-1 with GPS location.
On Sunday, March 16, 2025 at 11:29:23 PM EDT, George Ousler via groups.io <sailfishin@...> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via groups.io <marcgold@...> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.? The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
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SECOND INCIDENT AGE? - never COMPROMISED DISC CUP RATIO?¨C Yes UNAFFECTED EYE - no problem USING OZEMPIC OR SIMILAR NO - No POSSIBLE NOCTURNAL HYPOTENSION - unknown? CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No
Tim THIS WILL BE AN INVALUABLE SURVEY On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin=[email protected]> wrote: Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks. On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold=[email protected]> wrote: The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.?
The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic.
I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all:
Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk.
This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders. I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
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On Monday, March 17, 2025 at 05:32:20 PM CDT, David Cattle via groups.io <djacattle@...> wrote:
SECOND INCIDENT AGE? - never COMPROMISED DISC CUP RATIO?¨C don't know UNAFFECTED EYE - no problem USING OZEMPIC OR SIMILAR NO - No POSSIBLE NOCTURNAL HYPOTENSION - possible CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No OTHER?¨C have been taking lipid chloresterol medication for two years? ? William THIS WILL BE AN INVALUABLE SURVEY
On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote: Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks. On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold=[email protected]> wrote: The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.?
The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic.
I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all:
Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk.
This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders. I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
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FIRST INCIDENT AGE 62 - 57 SECOND INCIDENT AGE ?N/A - 65 COMPROMISED DISC CUP RATIO?¨C N/A AFFECTED EYE YES ¨C Yes both USING OZEMPIC OR SIMILAR NO - No POSSIBLE NOCTURNAL HYPOTENSION - Yes CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No OTHER?¨C Leiden Factor V, previously heavy alcohol use, ? David THIS WILL BE AN INVALUABLE SURVEY
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On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote: Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks. On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold=[email protected]> wrote: The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.?
The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic.
I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all:
Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk.
This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders. I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
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George,
Just curious, what was your dose of Monjourno? I am on a the lowest dose of Ozempic .25 mg and lost my left eye vision with a NAION attack 5 years ago. My NO at Cornell says that my other eye does not have a low cup to disc. My attack was probably caused by low BP drop from another disease that was untreated at the time called AVP-D Deficiency. My blood pressure is usually always low. Any help you can give me with this would be much appreciated.
On Sun, Feb 16, 2025 at 10:36?PM George Ousler via <sailfishin= [email protected]> wrote:
Hi There,
I have had a NAION in both eyes. First happened in my right?eye at age 41 and then the left eye just a few months ago at age 49. I have small cup?to disc ratio on both eyes (crowded disc syndrome from birth). The first occurrence happened after starting a low dose of BP meds that I provably didn¡¯t need. I was taking it at night which was incorrect. My BP dropped lower than it should have between the medication and diurnal (evening lowering) changes. I lost about 35% of my vision in the lower inferior visual field (6 to 9 o'clock). Then I most recently lost vision inferiority (3 to 6 o¡¯clock) in my left eye after taking monjourno (GLP2 similar to ozempic) for about 6 months. My neuro ophthalmologist out of mass eye and ear?in Boston is convinced it is due to monjourno - he published his resesrch?on the topic. I also work in research for ophthalmology and I¡¯m happy to explain more as needed. But the use of steroids for a NAION is not well supported. It is usually used as a last ditch effort for those who have serious vision loss in both eyes. However there are few studies that show it does anything helpful. If you are a diabetic and have high BP it may not be worth the side efforts of steroids. Long story short the use of steroids have not helped but if you don¡¯t have diabetes or high BP there is no risk of trying steroids. They need to be at high doses early after the NAION.??I will say that the GLP2 are very dangerous for those of us who have had NAIONs. Do not use these?drugs!!! Please let me know if I can help. George?
On Sunday, February 16, 2025, 9:57 PM, aowats3 via <aowats3=[email protected]> wrote: How prevalent is steroid treatment after NAAION diagnosis? I¡¯ve had NAAION one month max, in one eye, triggered, I believe, by Ozempic, which I¡¯ve obviously stopped. Just had tests for carotid arteries, electrocardiogram and brain MRI without contrast, all negative. Have sleep apnea and type 2 dm, both well controlled. 79 years old.
-- DEBRA BROWN-GROSSMAN, MPH, RDNPediatric and Adolescent Nutrition Specialist Adult Nutrition and Weight Management Consultant 518-888-2929? ?fax: 518-751-2403
|
?
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
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On 03/17/2025 10:17 AM EDT Andrew Watson via groups.io <aowats3@...> wrote:
?
?
SEX MALE
?
FIRST INCIDENT AGE 57
?
CURRENT AGE 60
?
SECOND INCIDENT AGE ?N/A
?
COMPROMISED DISC CUP RATIO?
?
AFFECTED EYE yes
?
UNAFFECTED EYE YES
?
USING OZEMPIC OR SIMILAR no
?
HYPERTENSION no
?
POSSIBLE NOCTURNAL HYPOTENSION PERHAPS
?
DIABETES slightly elevated--just above 100
?
SLEEP APNOEA no
?
CAUSAL RELATIONSHIP TO COVID ILLNESS possibly
?
CAUSAL RELATIONSHIP TO COVID VACCINE NO
?
STILL DRIVING YES, but not at night
?
OTHER: high cholestrol
|
SEX - Female
1st incident - 65
Current age - 67
Second incident - N/A
Compromised disc - edema at disc
Affected eye - Yes - left eye
Unaffected eye - Yes
Ozempic - No .? Diabetic but on Metformin and Lantus
HTN - No
Poss Noct Hypotension - ?
Sleep apnea - yes
Causal Covid illness - No
Causal Covid vaccine - Not sure
Driving - Yes, but only during the day
Other - Diabetic x 20 yrs, sugars well controlled, not using a CPAP machine.? Plan to revisit and assess sleep apnea
On Mon, Mar 17, 2025, 10:17?a.m. Andrew Watson via <aowats3= [email protected]> wrote: SEX MALE ? FIRST INCIDENT AGE 78 (8 wks ago) ? CURRENT AGE 78 ? SECOND INCIDENT AGE ?N/A ? COMPROMISED DISC CUP RATIO? ? AFFECTED EYE UNK ? UNAFFECTED EYE YES ? USING OZEMPIC OR SIMILAR YES ? HYPERTENSION MILD ? POSSIBLE NOCTURNAL HYPOTENSION PERHAPS ? DIABETES YES ? SLEEP APNOEA YES, well controlled ? CAUSAL RELATIONSHIP TO COVID ILLNESS NO ? CAUSAL RELATIONSHIP TO COVID VACCINE NO ? STILL DRIVING YES ? OTHER: just slightly obese; history of AFIB; had an isolated AFib incident with tachycardia around time stricken
|
SEX MALE ? FIRST INCIDENT AGE 78 (8 wks ago) ? CURRENT AGE 78 ? SECOND INCIDENT AGE ?N/A ? COMPROMISED DISC CUP RATIO? ? AFFECTED EYE UNK ? UNAFFECTED EYE YES ? USING OZEMPIC OR SIMILAR YES ? HYPERTENSION MILD ? POSSIBLE NOCTURNAL HYPOTENSION PERHAPS ? DIABETES YES ? SLEEP APNOEA YES, well controlled ? CAUSAL RELATIONSHIP TO COVID ILLNESS NO ? CAUSAL RELATIONSHIP TO COVID VACCINE NO ? STILL DRIVING YES ? OTHER: just slightly obese; history of AFIB; had an isolated AFib incident with tachycardia around time stricken
|
SEX female
FIRST INCIDENT AGE 58
CURRENT AGE 63
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO
AFFECTED EYE YES, no acuity
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION NO
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE NO
STILL DRIVING During the day
OTHER - small cup/disc both eyes
SEX MALE
?
FIRST INCIDENT AGE 65
?
CURRENT AGE 68
?
SECOND INCIDENT AGE ?N/A
?
COMPROMISED DISC CUP RATIO?
?
AFFECTED EYE YES
?
UNAFFECTED EYE YES
?
USING OZEMPIC OR SIMILAR NO
?
HYPERTENSION YES
?
POSSIBLE NOCTURNAL HYPOTENSION NO
?
DIABETES NO
?
SLEEP APNOEA Mild 12 AHI now corrected by HGNS
?
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
?
CAUSAL RELATIONSHIP TO COVID VACCINE NO
?
STILL DRIVING YES
?
OTHER: Suspicious of virus/antibody causal relationship?
|
Thanks to all who have responded.?
Cone on all fellow members, let¡¯s hear your feedback.?
So valuable to hear all of this
Terry
SEX MALE
?
FIRST INCIDENT AGE 65
?
CURRENT AGE 68
?
SECOND INCIDENT AGE ?N/A
?
COMPROMISED DISC CUP RATIO?
?
AFFECTED EYE YES
?
UNAFFECTED EYE YES
?
USING OZEMPIC OR SIMILAR NO
?
HYPERTENSION YES
?
POSSIBLE NOCTURNAL HYPOTENSION NO
?
DIABETES NO
?
SLEEP APNOEA Mild 12 AHI now corrected by HGNS
?
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
?
CAUSAL RELATIONSHIP TO COVID VACCINE NO
?
STILL DRIVING YES
?
OTHER: Suspicious of virus/antibody causal relationship?
|
SEX MALE
?
FIRST INCIDENT AGE 65
?
CURRENT AGE 68
?
SECOND INCIDENT AGE ?N/A
?
COMPROMISED DISC CUP RATIO?
?
AFFECTED EYE YES
?
UNAFFECTED EYE YES
?
USING OZEMPIC OR SIMILAR NO
?
HYPERTENSION YES
?
POSSIBLE NOCTURNAL HYPOTENSION NO
?
DIABETES NO
?
SLEEP APNOEA Mild 12 AHI now corrected by HGNS
?
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
?
CAUSAL RELATIONSHIP TO COVID VACCINE NO
?
STILL DRIVING YES
?
OTHER: Suspicious of virus/antibody causal relationship?
|
SEX Female
FIRST INCIDENT AGE 41
CURRENT AGE 61
SECOND INCIDENT AGE 61 - occurred 4 weeks ago
COMPROMISED DISC CUP RATIO yes
AFFECTED EYE yes
UNAFFECTED EYE Both are affected
USING OZEMPIC OR SIMILAR NO
HYPERTENSION No
POSSIBLE NOCTURNAL HYPOTENSION No
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS No,
CAUSAL RELATIONSHIP TO COVID VACCINE No
STILL DRIVING YES, in my small town
OTHER
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Show quoted text
On Mar 16, 2025, at 11:59?PM, Terry Berelowitz via groups.io <craigberelowitz@...> wrote:
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE N/A
COMPROMISED DISC CUP RATIO
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER
|
NAION SURVEY
Sex - Female
First incident age -65
Current age -65
Second incident age -N/A
Affected eye ~ left eye
Affected Eye - yes
Unaffected eye - yes
Using Ozempic or similar- no
Hypertension - yes controlled by meds over 30 years
Possible nocturnal hypotension- yes
Diabetes ~ no
Sleep apnea - not yet tested but don¡¯t think so
Causal relationship to COVID illness- no
Causal relationship to COVID vaccine - no
Still driving - yes in daylight
Other - we have retirement travel plans to some places with high altitude, would you guys cancel ? My incident happened at 465 ft above sea level. How do you cope with the worry of second eye involvement. My incident occurred at the end of January.
|
Hi
This survey sounds like a good idea.? Here are my responses: -
SEX female
FIRST INCIDENT - AGE 66
CURRENT AGE -? 67
SECOND INCIDENT AGE -? ?N/A
AFFECTED EYE - LEFT EYE
UNAFFECTED EYE - RIGHT EYE, SHOWS DAMAGE ON MRI SCAN BUT VISION OKAY
USING OZEMPIC OR SIMILAR - NO
HYPERTENSION - YES AT TIME OF NAION ATTACK BUT NOT NOW
POSSIBLE NOCTURNAL HYPOTENSION - YES
DIABETES -? NO
SLEEP APNOEA - NO
CAUSAL RELATIONSHIP TO COVID ILLNESS - NO
CAUSAL RELATIONSHIP TO COVID VACCINE - NO
STILL DRIVING - YES (SHORT DISTANCES ONLY, MAX 30 MINS)?
OTHER? -? TESTS FOLLOWING NAION FOUND I HAD SEVERAL VASCULAR ISSUES;? HIGH CHOLESTEROL, HIGH SUGAR & SODIUM, MILD ARRYTHMIA & SLIGHTLY OVERWEIGHT.? THESE NOW MOSTLY UNDER CONTROL.? TAKING A LOW DOSE STATIN AND MINI ASPIRIN DAILY.? NOW DRINKING MORE WATER AND
WALKING 5 MILES DAILY.
On Mon, 17 Mar 2025 at 3:59?pm, Terry Berelowitz via ?<craigberelowitz= [email protected]> wrote:
HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
From:[email protected] on behalf of Chiarina Blake via groups.io
Sent:?Monday, March 17, 2025 05:45
To:[email protected]
Subject:?Re: [NAION] SURVEY
I¡¯LL START
SEX female
FIRST INCIDENT AGE 58
CURRENT AGE 64
SECOND INCIDENT AGE ?N/A
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION No
POSSIBLE NOCTURNAL HYPOTENSION yes
DIABETES NO
SLEEP APNOEA Yes
CAUSAL RELATIONSHIP TO COVID ILLNESS No
CAUSAL RELATIONSHIP TO COVID VACCINE No
STILL DRIVING No
OTHER?
NAION affected my only good functioning eye. I was born with an under developed retina in my other eye. Confirmed cause of my attack was Sleep Apnea
On Mon, 17 Mar 2025 at 3:59?pm, Terry Berelowitz via
?<craigberelowitz= [email protected]> wrote:
HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
PLEASE DO ANSWER
THANK YOU
TERRY
MEDICAL SPECIALIST
On Mon, 17 Mar 2025 at 05:29, George Ousler via ?<sailfishin= [email protected]> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6
months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant
blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that
you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small
cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass
General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via ?<marcgold= [email protected]> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.?
The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic.
I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all:
Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide,
it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the
observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk.
This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
|
SEX female
FIRST INCIDENT AGE 72
CURRENT AGE 74
SECOND INCIDENT AGE ?N/A
AFFECTED EYE YES, no acuity
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION NO
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE NO
STILL DRIVING During the day
OTHER - small cup/disc both eyes
On Mon, Mar 17, 2025 at 1:45?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: I¡¯LL START
SEX female
FIRST INCIDENT AGE 58
CURRENT AGE 64
SECOND INCIDENT AGE ?N/A
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION No
POSSIBLE NOCTURNAL HYPOTENSION yes
DIABETES NO
SLEEP APNOEA Yes
CAUSAL RELATIONSHIP TO COVID ILLNESS No
CAUSAL RELATIONSHIP TO COVID VACCINE No
STILL DRIVING No
OTHER? NAION affected my only good functioning eye. I was born with an under developed retina in my other eye. Confirmed cause of my attack was Sleep Apnea On Mon, 17 Mar 2025 at 3:59?pm, Terry Berelowitz via <craigberelowitz= [email protected]> wrote: HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
PLEASE DO ANSWER
THANK YOU
TERRY
MEDICAL SPECIALIST On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold= [email protected]> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.? The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
I¡¯LL START
SEX female
FIRST INCIDENT AGE 58
CURRENT AGE 64
SECOND INCIDENT AGE ?N/A
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION No
POSSIBLE NOCTURNAL HYPOTENSION yes
DIABETES NO
SLEEP APNOEA Yes
CAUSAL RELATIONSHIP TO COVID ILLNESS No
CAUSAL RELATIONSHIP TO COVID VACCINE No
STILL DRIVING No
OTHER? NAION affected my only good functioning eye. I was born with an under developed retina in my other eye. Confirmed cause of my attack was Sleep Apnea On Mon, 17 Mar 2025 at 3:59?pm, Terry Berelowitz via <craigberelowitz= [email protected]> wrote:
HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
PLEASE DO ANSWER
THANK YOU
TERRY
MEDICAL SPECIALIST On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold= [email protected]> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.? The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
|
HULLO ALL
FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US
WE LOOK AT THE STATS FOR REASSURANCE
IT WOULD BE SO HELPFUL, I¡¯M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP
PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE
I¡¯LL START
SEX MALE
FIRST INCIDENT AGE 62
CURRENT AGE 66
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO?
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION YES
POSSIBLE NOCTURNAL HYPOTENSION
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER?
THIS WILL BE AN INVALUABLE SURVEY
PLEASE DO ANSWER
THANK YOU
TERRY
MEDICAL SPECIALIST
On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> wrote:
Hi Marc,
Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks.
George ?
On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold= [email protected]> wrote:
The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye.? The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0¡¤228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders.
I will report my progress which should allay some of your concerns about?Semaglutide and NAION.
Marc
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GaryGBrown
Tracey Dowsing