|
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
|
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.
|
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
|
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.
|
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
toggle quoted message
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
|
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 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?
|
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
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
|
?
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
toggle quoted message
Show quoted text
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
|
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.
|
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.
|
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.
|
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
|
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.
|
SEX MALE
FIRST INCIDENT AGE 36
CURRENT AGE 38
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO
AFFECTED EYE NO
UNAFFECTED EYE NO
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION NO
DIABETES NO
SLEEP APNEA LOW
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE Event did not occur near a vaccine but its possible as a long term effect I suppose.
STILL DRIVING YES
OTHER: - slightly elevated cholesterol at time of occurrence. Now on low dose statin 5mg/day crestor and baby aspirin 3-4 times per week. also taking DHA, B3, COQ10, ADK, Zinc, AREDS, and a few others daily.?
- Nearly complete loss of sight in affected eye. Black and white images only. Acuity of 20/800 at best and still a dull/fuzzy picture at best¡. Have found blackout/occlusive contact lens to be very helpful to avoid the haze and distorted vision. Mostly affective when focusing on a certain task (video game, softball/sports, fine precision work, driving). Also installed blind spot cameras on my car with monitors on the dash which helps to not turn my head away from the windshield.
On Mon, Mar 17, 2025 at 12:59?AM 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
|
I, certainly, am hugely appreciative of all the valuable sharing.?
Thank you to all.?
We are a small group, so it¡¯s a mixture of some anxiety and some comfort to read everyone¡¯s experiences.?
Hoping to hear even more.?
Terry
On Tue, 18 Mar 2025 at 06:19, Phil Moskowitz via <Pjmoskowitz= [email protected]> wrote: SEX MALE
FIRST INCIDENT AGE 36
CURRENT AGE 38
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO
AFFECTED EYE NO
UNAFFECTED EYE NO
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION NO
DIABETES NO
SLEEP APNEA LOW
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE Event did not occur near a vaccine but its possible as a long term effect I suppose.
STILL DRIVING YES
OTHER: - slightly elevated cholesterol at time of occurrence. Now on low dose statin 5mg/day crestor and baby aspirin 3-4 times per week. also taking DHA, B3, COQ10, ADK, Zinc, AREDS, and a few others daily.?
- Nearly complete loss of sight in affected eye. Black and white images only. Acuity of 20/800 at best and still a dull/fuzzy picture at best¡. Have found blackout/occlusive contact lens to be very helpful to avoid the haze and distorted vision. Mostly affective when focusing on a certain task (video game, softball/sports, fine precision work, driving). Also installed blind spot cameras on my car with monitors on the dash which helps to not turn my head away from the windshield.
On Mon, Mar 17, 2025 at 12:59?AM 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
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SEX: Female
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FIRST INCIDENT AGE: 58
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CURRENT AGE 59
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SECOND INCIDENT AGE ?N/A
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COMPROMISED DISC CUP RATIO?
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AFFECTED EYE YES
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UNAFFECTED EYE: Was not told by docs, have just assumed that both are affected.
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USING OZEMPIC OR SIMILAR: NO
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HYPERTENSION: Yes, identified and medicated after occurrence?
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POSSIBLE NOCTURNAL HYPOTENSION: NO
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DIABETES: NO
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SLEEP APNOEA: NO
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CAUSAL RELATIONSHIP TO COVID ILLNESS: No
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CAUSAL RELATIONSHIP TO COVID VACCINE: No
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STILL DRIVING YES
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I'm in the UK. The weekend before my occurrence I had let myself get very dehydrated and had taken Dihydrocodeine for elbow pain, which had been prescribed to my husband for pain after an op.? Whether this had any influence or not is anyone's guess! I am also now on daily aspirin as I had an historical blood clotting disorder from several miscarriages 30 years ago. The docs were interested in this fact as a possible contributory factor. They are also of the opinion that NAION is more likely? instigated by Hypertension than Hypotension.? I believe that it was just a perfect storm of circumstances and just pray that it doesn't affect my other eye.?
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Tracey Dowsing
GaryGBrown