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Re: SURVEY

 

Hopefully, in the end, someone more nimble than I will aggregate, but casual reading seems to me to yield pretty universal small cup ratio and perhaps BP issues. It¡¯d be interesting to learn % of overall population that has small cup/disk ratios.

On Mar 18, 2025, at 11:13, Deane Williams via groups.io <pyroartist@...> wrote:

?

On 3/17/2025 12:58 AM, Terry Berelowitz via groups.io asked for:


Answering for my wife who has NAION:
SEX FEMALE

FIRST INCIDENT AGE 64

CURRENT AGE 72

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

DIABETES NO

SLEEP APNOEA NO

CAUSAL RELATIONSHIP TO COVID ILLNESS No

CAUSAL RELATIONSHIP TO COVID VACCINE No

STILL DRIVING YES

OTHER - Possible cause stress: loss of family dog and concern over a spot on mamogram.

THIS WILL BE AN INVALUABLE SURVEY

PLEASE DO ANSWER

THANK YOU

TERRY





Re: SURVEY

 

Once again, thanks for all the kind responses?

Terry

On Tue, 18 Mar 2025 at 17:13, Deane Williams via <pyroartist=[email protected]> wrote:


On 3/17/2025 12:58 AM, Terry Berelowitz via asked for:


Answering for my wife who has NAION:
> SEX FEMALE
>
> FIRST INCIDENT AGE 64
>
> CURRENT AGE 72
>
> 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
>
> DIABETES NO
>
> SLEEP APNOEA NO
>
> CAUSAL RELATIONSHIP TO COVID ILLNESS No
>
> CAUSAL RELATIONSHIP TO COVID VACCINE No
>
> STILL DRIVING YES
>
> OTHER - Possible cause stress: loss of family dog and concern over a
> spot on mamogram.
>
> THIS WILL BE AN INVALUABLE SURVEY
>
> PLEASE DO ANSWER
>
> THANK YOU
>
> TERRY







Re: SURVEY

 

On 3/17/2025 12:58 AM, Terry Berelowitz via groups.io asked for:


Answering for my wife who has NAION:

SEX FEMALE

FIRST INCIDENT AGE 64

CURRENT AGE 72

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

DIABETES NO

SLEEP APNOEA NO

CAUSAL RELATIONSHIP TO COVID ILLNESS No

CAUSAL RELATIONSHIP TO COVID VACCINE No

STILL DRIVING YES

OTHER - Possible cause stress: loss of family dog and concern over a spot on mamogram.

THIS WILL BE AN INVALUABLE SURVEY

PLEASE DO ANSWER

THANK YOU

TERRY


keyboard

 

can anyone recommend a large print keyboard?


Re: SURVEY

 

SEX: Female
?
FIRST INCIDENT AGE: 58
?
CURRENT AGE 59
?
SECOND INCIDENT AGE ?N/A
?
COMPROMISED DISC CUP RATIO?
?
AFFECTED EYE YES
?
UNAFFECTED EYE: Was not told by docs, have just assumed that both are affected.
?
USING OZEMPIC OR SIMILAR: NO
?
HYPERTENSION: Yes, identified and medicated after occurrence?
?
POSSIBLE NOCTURNAL HYPOTENSION: NO
?
DIABETES: NO
?
SLEEP APNOEA: NO
?
CAUSAL RELATIONSHIP TO COVID ILLNESS: No
?
CAUSAL RELATIONSHIP TO COVID VACCINE: No
?
STILL DRIVING YES
?
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.?
?


Re: SURVEY

 

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.

Phil Moskowitz




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


Re: SURVEY

 

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.

Phil Moskowitz




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


Re: Steroids

 

Hi Deborah,?

I was on the lowest dose of Monjourno to start (about 2 months). Then I went to the next dose (I believe it was 7.5) based on the fact that the lowest dose was not available (too many people using it for the wrong reasons). I then used the 7.5 dose for about 4 months until the NAION occurred. I stopped using Monjourno immediately per the recommendation of my Neuro-Ophthalmologist at Mass Eye and Eye (Dr. Rizzo / Mallory). These are the ones who have done extensive research on the association between GLPs and NAIONs. They said that my NAION was caused by Monjourno.We all need to be very aware of the potential side effects of this drug in individuals with small cup to disc ratios. Please let me know if you have any other questions - it is so important to share our stories / information as there are very few of us. Thanks!

George?

On Monday, March 17, 2025 at 04:11:25 PM EDT, Debra-Brown Grossman via groups.io <debradietworks@...> wrote:


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, RDN
Pediatric and Adolescent Nutrition Specialist
Adult Nutrition and Weight Management Consultant
518-888-2929? ?fax: 518-751-2403


Re: SURVEY

 

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)

?

CURRENT AGE 49

?

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

?

PLEASE DO ANSWER

?

THANK YOU

?

TERRY

?



On Monday, March 17, 2025 at 08:12:09 PM EDT, Tim Elersich <mcgauge@...> wrote:








SEX MALE - Male

?

FIRST INCIDENT AGE 60

?

CURRENT AGE 63

?

SECOND INCIDENT AGE? - never

?

COMPROMISED DISC CUP RATIO?¨C Yes

?

AFFECTED EYE YES ¨C left

?

UNAFFECTED EYE - no problem

?

USING OZEMPIC OR SIMILAR NO - No

?

HYPERTENSION YES - no

?

POSSIBLE NOCTURNAL HYPOTENSION - unknown?

?

DIABETES NO - no

?

SLEEP APNOEA - Yes

?

CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No

?

CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No

?

STILL DRIVING YES - yes

?

OTHER?¨C ?

Tim

?

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


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 Ophthalmology
The 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.


Re: SURVEY

 

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


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


Re: SURVEY

 

¿ªÔÆÌåÓý







SEX MALE - Male

?

FIRST INCIDENT AGE 60

?

CURRENT AGE 63

?

SECOND INCIDENT AGE? - never

?

COMPROMISED DISC CUP RATIO?¨C Yes

?

AFFECTED EYE YES ¨C left

?

UNAFFECTED EYE - no problem

?

USING OZEMPIC OR SIMILAR NO - No

?

HYPERTENSION YES - no

?

POSSIBLE NOCTURNAL HYPOTENSION - unknown?

?

DIABETES NO - no

?

SLEEP APNOEA - Yes

?

CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No

?

CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No

?

STILL DRIVING YES - yes

?

OTHER?¨C ?

Tim

?

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


Re: SURVEY

 



On Monday, March 17, 2025 at 05:32:20 PM CDT, David Cattle via groups.io <djacattle@...> wrote:



SEX MALE - Male

?

FIRST INCIDENT AGE 76

?

CURRENT AGE 78

?

SECOND INCIDENT AGE? - never

?

COMPROMISED DISC CUP RATIO?¨C don't know

?

AFFECTED EYE YES ¨C left

?

UNAFFECTED EYE - no problem

?

USING OZEMPIC OR SIMILAR NO - No

?

HYPERTENSION YES - no

?

POSSIBLE NOCTURNAL HYPOTENSION - possible

?

DIABETES NO - no

?

SLEEP APNOEA NO - no

?

CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No

?

CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No

?

STILL DRIVING YES - yes

?

OTHER?¨C have been taking lipid chloresterol medication for two years?

?

William

?

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


Re: SURVEY

 

¿ªÔÆÌåÓý

Ok, here goes

SEX MALE - Male

?

FIRST INCIDENT AGE 62 - 57

?

CURRENT AGE 66 - 75

?

SECOND INCIDENT AGE ?N/A - 65

?

COMPROMISED DISC CUP RATIO?¨C N/A

?

AFFECTED EYE YES ¨C Yes both

?

UNAFFECTED EYE YES - No

?

USING OZEMPIC OR SIMILAR NO - No

?

HYPERTENSION YES - Yes

?

POSSIBLE NOCTURNAL HYPOTENSION - Yes

?

DIABETES NO - no

?

SLEEP APNOEA NO - Yes

?

CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No

?

CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No

?

STILL DRIVING YES - yes

?

OTHER?¨C Leiden Factor V, previously heavy alcohol use,

?

David

?

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


Re: Steroids

 

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, RDN
Pediatric and Adolescent Nutrition Specialist
Adult Nutrition and Weight Management Consultant
518-888-2929? ?fax: 518-751-2403


Re: SURVEY

 

¿ªÔÆÌåÓý

?

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

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


Re: SURVEY

 

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


Re: SURVEY

 

¿ªÔÆÌåÓý

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


Re: SURVEY

 

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


On Mon, Mar 17, 2025 at 9:40?AM GaryGBrown via <bhmvol=[email protected]> wrote:
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?