Interesting Webinar Takeaways

I watched a webinar yesterday morning on a site called New Horizons and they shared some hopeful new developments in glaucoma research so I thought I'd share them on here:

Vitamin B3 Nicotinamide showed slight improvement in the vision of the participants of a limited study. It could possibly be neuroprotective but a longer study with more participants is needed.

Applied genetics is currently being used to detect and delete defective genes in other eye conditions (not glaucoma yet) including familial specific precision pre-detection and prevention meaning if you have a child they can be tested and treated before they even get the disease and it can possibly be wiped out before any damage occurs. In 10 years or possibly sooner glaucoma precision treatment will be a reality including: Precise diagnosis, Patient-specific treatment planning and Risk of progression, Neuron rescue, protection and regeneraton.

NT-501 encapsulated cell therapy implant can be surgically placed in the eye which releases drops so you don't need to take them any more. *Not sure when this is released will watch again tomorrow or if anyone else saw the webinar please share. 5-20 years from now (depending on funding): Treatments which preserve nerve cells to significantly increase chances of halting progression.

Some very positive changes happening ;D Interestingly the doctor who gave the presentation said that if they can rush through the covid vaccine so quickly then surely they can devote more funds to speeding up treatments which I tend to agree on. He also said that in terms of protecting the optic nerve it's very important not to smoke and to take regular cardiovascular exercise which I think we all knew already but worth repeating anyway

[Hidden]

Thank you so much for sharing this with everyone. There is a lot of research into glaucoma happening in the background and it is nice to be reminded that things aren't at a stand still.

[Hidden]

Thankyou for sharing this Hidden really hope something happens sooner rather than later years. Xx

[Hidden in reply to Hidden]

I definitely think it's possible ay just depends on the money available. It gave me some much- needed hope and will be taking b3 from now on regardless as it can't hurt and following these and any more developments every now and then.

[Hidden in reply to Hidden]

Are you going to take b3 in vitamin form and if so how much in strength because I think I will do the same x

[Hidden in reply to Hidden]

Yes, specifically nicotinamide, also known as niacinamide. Im just going to ask the pharmacist next time I pick up my drops. I was going to order online but our rural postman seems to be on a permanent holiday

😅 I

[callie77]

Thank you sguy for sharing some good news. Wish they would find a answer to glaucoma in my lifetime.

[Hidden]

I wish in the next 5 years haha but yeah see what happens ay 🤞

[Kiara-52]

Thanks for sharing very interesting and fingers crossed they get the funding and it happens in the next few years and not 20 years! Interesting on vitamin B3 think I will look into start to take that

[Spanieldoglover]

Hi sguy, thank you for sharing this information, it’s always good to hear there are things going on that can give us hope there will be further treatments and maybe even a cure one day for glaucoma … in the not too distant future hopefully 🙏 I read about the study on Vit B3 and have started taking supplements. Although I’m only taking one 500mg capsule and I think they suggest we take much more. I am just unsure of what dose I’m also taking in food and so was a bit worried about taking too much.

[Hidden in reply to Spanieldoglover]

Best to ask your GP ay probably depends on the rest of your diet also.

[Hidden]

Ok I stuffed up the info a bit probably due to tiredness. The NT-501 device does not release eye drops, it releases proteins that protect the optic nerve. It is currently in phase 2 and will be publicly available in around 10 years, possibly sooner. The webinar is now on youtube: youtube.com/watch?v=BvHS-Oo...(Not working as expected?)

[rhys1234]

This makes me wonder ..... Have they identified the gene for glaucoma familial transmission ?

If so children of parents with G could be tested regularly to see if the condition has started to develop ?

[Hidden]

I'm not sure ay you would think if they had already it would be in use but it looks like they're definitely heading that way.

[muddledme]

Hello sguy 1823,

Thank you for all your interesting information from New Horizons, it is always so good to hear.

The Glaucoma UK magazine included an article this year mentioning Vit B3.

Every morning I take a spoonful of Engevita with Vit B12 with my breakfast. It is sold in tubs by Marigold, it is vegan and gluten free. It tastes good and is widely available, often in some supermarkets, it costs about £3 for 125 gms. (25 servings). It contains Vit B1, B2 ,B6 ,Folic Acid, B12, Biotin, B5, Iron ,Zinc and 21.1mg B3 per 5g serving.

I have always been told that it is better to take a combination of all the Vitamin B family otherwise it may upset the balance of the others.

We are so lucky that there are so many people researching all these diseases.

If I get the chance I have found taking part is fascinating. I also realise how much things have changed with Glaucoma treatment since my Mum was first diagnosed about 60 years ago.

Best wishes.

[Hidden in reply to muddledme]

That's interesting I didn't know that about Vitamin B thanks, Is Marigold Supermarket? I will see if Engevita is available here or else ask try ask the chemist about taking all the B vitamins and what is the highest daily dose. We have to try everything we can ay. I would willingly take part in research also. Yes things definitely have changed a lot but it's promising how quickly new technology can be developed I just wish Governments were doing more but we'll get there eventually.

[muddledme in reply to Hidden]

I buy my Engivita at Sainsburys , but it is also available in health food shops. Marigold produce a range of different products including some low salt Swiss vegetable bouillon powder which is delicious and so useful.

Sometimes research projects are advertised in the Glaucoma UK magazine or I think some may have been on health unlocked.

Yes ,it would be good if there was more research and sadly apparently some money has been diverted from many charities for Covid research.....although of course this often has knock on benefits as I believe they are already finding especially with the Pfizer/BioNTech vaccine. Hopefully more people may be inspired to study the sciences

[Hidden in reply to muddledme]

I found Engevita on a local health shop website but it's sold out. Engevita contains B3 Niacin which is different from Nicotinamide. I also found an article explaining the difference between B3 Niacin and Nicotinamide: wearefeel.com/blogs/learn/b...

[muddledme in reply to Hidden]

Thank you, I had not realised the difference between the two types of Vit B3.

I did find the article about research into mitochondrial function and nicotinamide in the Autumn 2021 edition of Insight and then read some more articles on the difference between Niacin and Nicotinamide.

Some articles infer that Nicotinamide is a water soluble form of Niacin , but it does also seem to have different effects. It is found in fish, poultry, eggs and cereal etc , and it may also be made in the body from Tryptophan.

Professor David Garway-Heath is trying to get funding for stage 2 of his research into "Does vitamin B3 reduce the rate of visual field loss in people with Glaucoma ?"

I will carry on with Engevita but may look out for some Nicotinamide now. Have you got any ?

[Hidden]

I was a bit confused ay as you would think it's pretty much the same thing if your body can convert one into the other but I'm going to get Nicotinamide anyway. I haven't got any yet, next time I pick up my steroid drops I'll ask otherwise if the pharmacy don't have it will order online.

[muddledme in reply to Hidden]

Still trying to understand the trial with Vit B.

Apparently Vit B2 is required for the activation of B6 and Vit B3 can be manufactured from other dietary agents, provided there is adequate B6. So they are all interlinked.

I realise that there are several Vit B 3 research trials on the internet . One trial seemed to find that Vit B2 (Riboflavin)was also useful . A Korean trial used Nicotinamide over 12 weeks, with the lowest effective daily dose given as 2.7 g/day for a 60 KG human. The highest dose was 9.8 g/day for60 KG human which also showed lower I.O.P.

(Ginko Biloba is sometimes useful but not with Normal Tension Glaucoma.)

It seems that Nicotinamide has few side effects even after long periods, although high doses may sometimes exacerbate Type2 Diabetes and effect the Liver. I notice that the supplements tend to be capsules, so do not contain a lot of other chemicals.Most supplements seem to be just 500 mg , but at least I suppose then the dose can be more easily tailored.

I am due to see the medics in December or the New Year , so I may wait and ask them, unless there is a Glaucoma UK Webinar where it may be suitable to ask a question.

Meanwhile will plod on with Engervix and the 21 mg Niacin . At least I am not quite so muddled !!

[Hidden]

There is also baicalein which has been shown to be effective at lowering IOP. My goal routine is wake up, meditation, bulletproof coffee, 30 mins cardio, carrot juice + Nicotinamide, work, meditation, Keto, meditation, sleep. My pressure is good at the moment so hoping it stays that way otherwise will take other supplements like Bilberry, GB, Baicalein...

[muddledme in reply to Hidden]

Glad to hear your pressure is good. I have Normal Tension Glaucoma , so the pressures have to be ideally about 10-12. I have had two Preserflo shunts but the pressures are creeping up a bit, so may need some medication .

Yes, thank you I have heard about Baicalein , apparently it is also contained in the herb Thyme, so I grow quite a lot of this and use it in cooking. Very easy to grow in tubs if the soil is heavy but needs a sheltered wall in winter . You have reminded me to use it liberally !

[Hidden in reply to muddledme]

I didn't know that either about thyme ay. My appointments are being pushed out to every 6 months which is a positive in a way but I would like to be able to monitor my own pressure just to make sure it's not creeping up so might look at either monthly optometrist visits or saving for my own tonometer. This article is very encouraging as it says that progression can definitely be stopped and has tips on specific foods: thenjeye.com/stop-glaucoma-...

[muddledme in reply to Hidden]

An interesting article, thank you.

It may be worth checking with Glaucoma UK before buying a tonometer. I think they had an article in the magazine about it a while ago which was not so positve, but I have forgotten why ! I was told that the eye pressure may be very labile, and usually high in the morning, the opposite of high blood pressure.

I grow nearly all my own fruit and veg, never have fast food and no sugar etc, but my eyes still deteriorated .Often I was unable to tolerate eye drops or they were ineffective.

During lockdown I was given oral high dose steroid for about 2 weeks as the medics thought I had an inflammed temporal artery....luckily I did not, but a few weeks after this I noticed that I had lost some vision in one eye and I am always suspicious of the steroids ( although if I had had the inflammed artery the risk was sight loss.)

But all this information is very helpful and a very good reminder.