A month ago some of you (and me) started to take nicotinamide mononucleotide to halt glaucoma progression and maybe improve vision, as was reported in a trial in Australia.
Has anyone as yet seen any difference or improvement? I am not sure if my situation is better but it does feel different with some better colour rendition and some acuity changes for distance. But I am already registered blind so any change is quite difficult to discern. Perhaps more time is needed.
Hi blackdog76I took this for about a month but then got called in for my operation. I have just undergone a Phacotrabeculectomy (combined op) so haven’t bought any more as yet . However I did feel that it may be preventing my vision from getting worse, so I may start it again when I am recovered. Will let you know how it goes. Good luck and I hope it works for you.
Hi Redshoes,I've just seen you have had another eye op, I remember you saying you were needing a trab. I hope you are recovering well. Take care x
Hi WitchieYes, It was done on 27 th April. Imagine my surprise (and shock) when my Consultant said he would do the trab and cataract together! It’s a much bigger op than a straightforward trab and has a slightly lower success rate, which was scary. But thanks to the skill of the surgeon it seems to have gone well and although it’s early days, I’m keeping fingers crossed for a good outcome. It will be great to get it all done together and so far so good ..... Thank you for your good wishes XX
I can imagine how you must have felt initially but it's positive that's it's going well and you are already 2 weeks post op. A straightforward recovery is definitely what you need. I had read about the combined cataract and trab op but never knew anyone who had been through it. It is good that you aren't going to have to go through a cataract op at a later date on that eye. I just ordered the Nicotinamide tablets that muddledme is using and fingers crossed it makes a difference. I've been taking Flaxseed oil capsules which are meant to help with lowering eye pressure but I can't say they made any difference at all.
You will be back dancing in no time 💃x
Hi! Interesting feedback. Thank you! May I ask how much and what type of nicotinamide (I know there’s different types) you are taking?
I haven’t started yet as there was discussion I’d have a trab but then my consultant reversed on that and I’m waiting now for more SLT on my left eye. I was going to start taking B3 after that but I’ve been waiting 3 mths and although I’ve chased I’ve had no indication my SLT is imminent.
I did put myself forward for the upcoming UK trial but that was a bit of a long shot as I live on the Exmoor borders, so not near a large hospital and so won’t hold my breath.
Life (including elderly parents and troublesome bees) have taken centre stage lately and my eyes and glaucoma are waiting in the wings for the moment. 😂
The type used in the Australian study was Nicotinamide Mononucleotide and is the one I am using. I have both capsules (500mg) and the pure powder to take in water. I am taking one capsule plus 1500 mg of the powder, so 2 grammes in total. None of the other types is likely to work and although Niacin might, the flushing is too much and can be dangerous at the levels needed.
The study was a crossover trial with half the cohort on 1.5 g per day and the others on 3g. At the half way they swapped over, so that must be to try and prove the optimum dose size. The details in full are behind a paywall so I have not seen it in full but my decide to pay for it.
I am not sure if my eyes are any better as yet but reasonable sure I have halted progression but I have not been to the eye hospital since November last year as they have either forgotten about me (again), or are punishing me for not agreeing to have a Preserflo Microshunt. I decided not to do this as the success rate is slightly better than 50%, which is very poor odds for three months out of my life for each eye. At my time of life I would rather use my time in other ways. In addition all the odds get worse once you are past 65 - 70 due to the long term use of prostaglandins and the inflammation they cause. In fact the older you get the less likely these radical operations like Trabs and shunts, are to succeed. A friend has had three Trabs all of which failed as they kept healing over. He is 65 and has lost most vision in one eye and is now registered blind as am I.
It is time the Consultants started listening to their patients and believing them. Ophthalmology is in dire straights, with too many patients, too few Consultants actually working because most of their time is being used up by private care, despite the fact WE paid for their training, still pay them an NHS salary AND let them use NHS facilities.
In truth any Consultant over 40 will also never have paid university fees either. I never did but at least I have put something back into society. There are only one set of Consultants whether private or NHS and your treatment will be the same but quicker in the private sector.
End of rant.
Hello. If you havent been seen since November of last year and you are normally seen more regularly, it would be a good idea to call the eye secretary to chase up the next appointment.
Thanks for your concern Trish.
My eye hospital and its consultants is likely the worst in the UK. They have since early 2018, lost me to follow-up and treatment three times, once for almost a year. I was phoning them often but all you get is an answering machine, the messages to which they never respond to. My own GP is openly excoriating about them, which is very unusual.
When I first was referred in 2018 they booked an SLT treatment as urgent but the laser generator was out of order and it took them more than six months to fix it, which is almost unbelievable and turned out to be incompetency as all it needed was a tiny piece of plastic but the PFI contractor they are tied to did not have a clue, and still doesn't. When it did happen they did it badly, failed to give me any drops to prevent it healing over and then told me it had failed only three weeks later. They then told me they would talk to me again as I had just been through major trauma when my wife nearly died due to the same trusts incompetence (for the third time), my daughter had cancer, the dog died and I had a a heart attack due to the stress and anxiety. They left me for ten months then.
On two more occasions I was left waiting for appointments spread over two years, that never came and only when I wrote to PALS in detail and the RNIB liaison office and their access to treatment advocate did anything happen. By that time I was very far gone and on 12th November 2021 given my certificate of severe vision loss/blind.
The only way to get their attention is to go down the PALS route again. I have also taken the person, who failed to see my optic nerve damage when undertaking slit lamp exams on TWELVE occasions over six years, to the GMC for incompetence. The person was censured and had to volunteer not to treat glaucoma patients but was allowed to continue practicing.
As you may deduce I am no one who suffers fools and I have spent some years as a patient advocate and also as a patient peer reviewer for a prestigious medical journal. I have fought and won many battles but sadly always lost the war.
Thanks for your concern.
Having worked in the NHS for many years I feel that too much is demanded from the staff. Most of them just want to do a good job which is made very difficult with the huge NHS workload. Perhaps this is why they do private work?
I tried for years to find a hospital that was not dangerously hectic but failed, so another health worker and myself emigrated to Australia in 1978. This seemed like the land of milk and honey, it was wonderful to not feel constantly exhausted and enjoy real job satisfaction.
Due to family illness I returned to the UK 5 years later but never worked in hospital again. I rarely still have nightmares about things going wrong on the wards...which happened over 40 years ago!
So many poor health issues could be prevented by education, improved lifestyles and higher taxes on junk food, alcohol etc.
Bill Gates says that so much illness and especially covid cases relates to obesity and type 2 diabetes (now sadly also in children) with an ongoing vast cost to our health service. Until we tackle these problems funds will be stretched even more and so there will always be a deficit for treatment and research and burnt out staff.
At least this forum gives us ideas and some hope !
Hi blackdog, can you tell me the brand you are using. there are so many out there and i want to use what you were prescribed. they are also very expensive when you look at the powder form. thanks valfrance
Hello blackdog76.
So pleased to hear of a possible improvement to your vision with the Nicotinamide.
I started with 500mg B3 Nicotinamide (Health4 All purest)with no additives, and have taken one daily since 1st March.
Having had numerous side effects with medicines I am wary about doubling the dose, so far no problems.
I have not noticed any difference to my vision. Recently the optometrist noticed small bleeds again in both eyes. I had not been seen at the hospital since last December, so no idea how long the bleeds have been there.
Hopefully I should be seen again in June and will ask the staff about B3 and coenzyme Q 10 drops.
The optometrist thinks my pressures must be very labile even following two shunts. They average 13-14. He also chatted about the coenzyme drops and said that there was quite a bit of information online. Although they sound promising they are still under research.......ncbi.nlm.nih.gov.
It will be interesting to see if the B3 has lowered my cholesterol ,as it can be used for this. I must book up for a blood test and report back !
Our eye clinic now calculates the next appointment from when the last letter was written to the patient and not from the actual clinic date, so at least I know what to expect and why 6 months can easily morph into 7.
Best wishes
Hi Blackdog76,
I'm very interested in your post as I have recently changed consultant and am due to have a trabeculectomy at Moorfields. My surgeon is involved in a study currently happening in UK which he said is proving that everything he thought about Nicotinamide is proving to be right and it is showing that it helps. He is now recommending that all his patients take it preferably at strength of 1g. Although he said for me to start with 500mg as I am petite.
I haven't noticed any difference in vision yet but I've been struggling to take them everyday because the flushing symptoms are quite severe for me and it was stopping me getting to sleep because of the skin discomfort it causes. However I will persevere and am now finding if I take the tablet literally whist sitting in bed and lights out straight away I can usually get to sleep before the flushing begins.
Hi Bonniecat7! You’ve mentioned you’ve changed consultant. May I ask what prompted you to do this? And how you found your new consultant? I’m having some doubts about my treatment but unsure if it’s just NHS related pressures and delays. Thanks.
Sounds like you are using Niacin or Niacinamide and not Nicotinamide Mononucleotide. You will get pronounced flushing with those despite them all being type of Vitamin B3. I would change and try for 1500 mgs a day of the correct one.
Keep me posted and I'll keepe everything crossed for you (an me).
Hi Blackdog76 may I ask where you purchased your Nicotinamide Mononucleotide from please ?
Where else, but the ubiquitous Amazon.
If you enter Nicotinamide Mononucleotide in the search box you will get a lot of results. I use the Hyer powder, as it does not give me any G I problems but also have some capsules as well, which I only take with food to stop them from giving me any problems. I try to take 2000 mg per day in total but the powder is expensive but high quality at £35 for 30 grams, so i use it carefully, and don't forget to keep it in the fridge. I found that out some time after getting it as the print on the packs is too small but I got around to magnifying them on the website, to read them.
Sorry for the slow response, but I had a day out of the loop yesterday to take care of some problems with our flat.
Thank you for your reply Blackdog76 ..Really appreciate it 🙂
Blackdog76 This is very interesting ,hope it works for you .
Hi ! Do you really think it has to be nicotinamide mononucleotide ? I have been taking nicotinamide riboside. You assume the other types will not work. Why?
It is quite complicated. Riboside is the resultant molecule formed from the mononucleotide which then forms the active molecule in the cells called Nicotinamide Adenine Dinucleotide. But you can't use the last form (although you can buy it), because the molecule size is too large to pass through the cell walls. Riboside is in the chain but scientific opinion is that it does not absorb in that form. There is some conjecture about this.
The study used Mononucleotide and we are trying to repeat the result. If we move any of the goal posts we cannot be sure of the result being the same. It is possible Riboside would work but science is about controlled trials so we look for repeatability, unless we want to wander off into unknown territory.
Look I am not certain that what is said by persons higher up the paygrade of biochemistry than am I, is certain, but what I have said is the scientific consensus at the moment.
Ok! Thanks for your response. I did see one ongoing study in China with glaucoma and Riboside. Am looking at one from the USA but they don't specify the type of Nicotinamide. I think I will go get some Mononucleotide!😃
hi blackdog, i just bought the powder Nicotinamide Mononucleotide from the same company. it cost 26 pounds for 15grams... and that was an offer.....you mention you also take the capsules. i could only see the powder. it will proove very expensive to continue this. i just received this today.
can you send me a link to your capsules or the name of them.
thanks valfrance
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