Can anyone recommend a safe strength of nicotinamide capsules for glaucoma capsules. Does riboside enhance it?

[Sparr0w-hawk]

I have read that a lot of research is being done even by Moorfields involving use of nicotinamide for glaucoma treatment.

[KieranGlaucomaUK Administrator]

Hi. We are unable to advise on dosages for vitamin B3. We recommend speaking to your consultant and getting their advice on this. I know there are some people on this forum who are taking Vitamin B3 for their glaucoma and they will likely be taking different doses. There is no right amount to take and we are still waiting for more research to conclude for more guidance on this. The trials are testing very high dosages (3g) with close monitoring, as high doses can cause side effects. My only advice would be ideally start smaller and see if it works for you. Before starting this please speak to your eye specialist.

[Laura7777]

Hello Sparr0w-Hawk.

As Kieran states in his reply, only your Ophthalmologist can recommend a dosage of Nicotinamide for you. However, my Ophthalmologist recommended 1000mg a day for me and (after building up to that by taking 500mg a day for a fortnight) I have had no problems. I do make sure I use the non-flushing kind and I will likely carry on with the 1000mg until the current research is complete.

Best Wishes

[Sparr0w-hawk in reply to Laura7777]

Hi LauraThank you, its useful to learn this.. Is your glaucoma newly diagnosed? And have you seen improvements? Are there side effects from increasing the dosage? I'm newly diagnosed with no prior treatment of any kind, so keen to try natural supplements. In April I received a 'nothing to worry about (IOP 17)'. In Sept my IOP is 19 and consultant wants to do a cataract and stent soon. I'm seeking a second opinion first.

I'm a strong believer in natural remedies even though I have NTG and know what that implies. So far no loss of vision though I'm terribly shortsighted.

[Laura7777 in reply to Sparr0w-hawk]

Hi Sparr0w-hawk,

My NTG glaucoma was diagnosed almost 40 years ago and I can't tell if there have been any improvements since I started taking the Nicotinamide. I started it after having an increase in my IOPs but, I also started a new eye drop (Roclanda) and changed one of my eye drops to a preservative free version at the same time. It might have been a combination of these changes or any one of them indivivdually which actually returned my IOPs to an acceptable 7 or 8. I can't tell and I wasn't going to risk trying each change individually and risk my eyesight any further.

It is a good approach to take only the medicines that are strictly necessary and use natural remedies where they are proven. However, in the case of NTG glaucoma, I am unaware of any natural remedies that actually control IOPs and I would not wish to risk losing anymore eyesight - I lost all my peripheral vision and 95% of my central vision around the time of diagnosis because the 'Eye Department' treated me for POAG glaucoma and not NTG.

We all have different target IOPs which our consultants set for us. 17nand 19 sound a bit high to me for NTG but as you are not suffering any loss of vision they must be OK for you. In anycase, I expect the cataract and stent procedures will lower your IOPs and I wish you luck with them.

Best Wishes, Laura

[Sparr0w-hawk in reply to Laura7777]

Hi Laura7777I'm getting a second opinion from a private specialist today. And to ask for my ideal IOP as I was not told much by surgeon who saw me. By then I'd be better informed. Grateful to all who replied to my queries as its quite scary to go from you are OK to a scheduled Trab in 6 months! But I understand the disease and various treatments a lot better now. History of glaucoma blindness in family caused in part by surgeon who operated on the wrong eye on a uncle!

So ultra careful!

[Laura7777 in reply to Sparr0w-hawk]

Hi Sparr0w-hawk,

How did your appointment go? Hope you've got answers now that can give you reassurance for the way forward for your glaucoma etc.

Best Wishes, Laura

[Sparr0w-hawk in reply to Laura7777]

Hi Laura 7777Thank you for kind wishes. I'm so very glad I sought a 2nd opinion. It's all a lot clearer now. I'm confirmed as open angle with 5% vision loss in one eye and 10% in the other. My IOP is somewhat unclear as there are no records available ( I have out in an official request which takes 6 weeks. But Sept tests show 19.

I have cataracts but can live with that for the time being but will get it done next year. Its back to the Q but thats ok. Consultant is expensive (cost me my holidays) but well worth the money as I ll be getting him to confirm my eye pressure correctly. Most likely he'll get me started on drops and see how that goes.

In the meantime I will definitely go on B3 and swim happily without any fear of infection to my eye from Trab, stent etc The difference exercise of the right kind makes to one's well-being and energy levels is immeasurable.

[Laura7777 in reply to Sparr0w-hawk]

Hi Sparr0w-hawk.

So glad your appointment went well. It shouldn't be so but it does make all the difference if you can see someone privately. They have the time to explain everything to you and answer your questions. Understanding is so important when there is something wrong with you, it counters fear of the unknown which is so debilitating. Did he give you a target number for your IOPs or is the lack of history preventing him doing so?

As you say, exercise is important to your well being and now you can go ahead and enjoy it all again.

I'm letting my cataracts stew for as long as possible before I have them done. They have been hanging around for a few years now but do not really affect my vision very much - no more so than the lack of vision generally does. My consultant is happy with that. I don't think he relishes the idea of removing them given the small amount of sight I have left.

Thanks for letting us know how your appointment went and good luck on your glaucoma journey.

Best Wishes,

Laura

[Sparr0w-hawk in reply to Laura7777]

Hi Laura

You are so right. Not knowing and being able to make informed decisions is the worse. I expect the consultant to run proper tests to establish my ideal IOP when I next see him. It's good he's not trigger happy too.

I think you have made wise choices to kinda let your cataracts be for the time being asthey haven't worsened to impede your life. Some of us have physiques that respond badly to anything invasive including healing. I am horrified when I read about how some people need lots of re-surgeries to remove scarring from Trabs...I believe one person's eye became worse. Of course others do well.

I'm almost convinced that I heard from the scary public consultant that he was gonna do aTrab and a hole for me. That got changed to a stent after lots of queries...I'm now so much better informed thanks to people sharing here and research I have done.

Good luck too for your eyes. Here's to keeping our eyesight happy and safe !

[Bonniecat7 in reply to Sparr0w-hawk]

Hi Sparr0w-hawk,There will be no 'improvements' after taking nicotinamide. The idea is that it seems to somehow protect the optic nerve from further damage. (Possibly to do with mitochondrial activitiy, which there is a theory that this is actually the problem with us normal tension sufferers)

It has nothing to do with IOP or vision.

Hope this helps as ther le seems to be alot of confusion on here!

I take 1000mg when I remember and have had no problems so far.

[Sparr0w-hawk in reply to Bonniecat7]

Hi Bonniecat 7Thanks. I am gonna try it!