avoid b3/nicotinamide: hi, I posted a few months... - Glaucoma UK

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avoid b3/nicotinamide

Blindbeggar83 profile image
9 Replies

hi, I posted a few months ago about my experience with b3 to help my glaucoma.

I took nicotinamide 500mg for roughly two years, I noticed I was going to the toilet more in the night but didn’t think much of it.

August 23’ I took nicotinamide 3000mg a day for two weeks, when i suddenly went into urine retention requiring a catheter.

several months later and still experiencing bladder symptoms, I was diagnosed with bph (an enlarged prostate)

a recent study HAS confirmed a link between nicotinamide and bph.

Rob

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Trish_GlaucomaUK profile image
Trish_GlaucomaUKPartner

Hello. I'm sorry to read that you have such terrible reactions to B3.

Were you advised by your consultant to start using it due to other glaucoma treatments not working in controlling your glaucoma. As you increased your dosage to 3000mg were you being closely monitored as this would normally be the case?

Blindbeggar83 profile image
Blindbeggar83 in reply toTrish_GlaucomaUK

No, I heard nicotinamide was effective for glaucoma, when the results of a study came out I upped the dosage. 2 weeks later I was In hospital. No doctors could find a link. Had an ultrasound on bladder and it showed an enlarged prostate.

A study released In August has confirmed a link.

I wish I never taken it. It’s caused so much anxiety you wouldn’t believe!

Trish_GlaucomaUK profile image
Trish_GlaucomaUKPartner in reply toBlindbeggar83

Studies have shown it may be helpful for some people with advanced glaucoma but isn't recommended for people who have well controlled glaucoma.

We always recommend that before starting B3 a person should speak to their consultant to ask their opinion.

I hope you feel better soon.

Sorshup profile image
Sorshup

With the greatest respect Rob, and not knowing your age, your BPH is very likely to have been developing for years and the nicotiunamide may be of little or no influence. I speak as someone with 35 years of glaucoma, 20 years with BPH causing multiple retention episodes and two prostate resections, the latest, thankfully, 18 months ago. That being said, to be effective against glaucoma, nicotinamide dosage may need to be even higher than that which you have used!

Blindbeggar83 profile image
Blindbeggar83 in reply toSorshup

when i went into retention I was 39, few months after I got told my prostate was enlarged. I had been taking nicotinamide since I was 37. I gather I’m fairly young to have bph.

Prostate could have been growing for years as you say, but there’s a study out that does show a link.

Sounds like you’ve certainly been through it. Right now I can pass urine ok- was prescribed tamsolosin but haven’t taken it as I’ve heard it can cause dysfunction downstairs. I’m taking pumpkin seed oil capsules that seem to be working at the moment. I know the prostate will only get bigger which is a worry.

Sorshup profile image
Sorshup in reply toBlindbeggar83

As you say, young for BPH but I note from the study I found on't net that the subjects were elderly and the review was over several years. Does your urologist have an opinion on nicotinamide? We shouldn't pursue this on he glaucoma forum, I will just observe that whatever the health issue there will always be contraindications and side effects to be balanced, and generally the experienced medic will have the best advice for you. But as has been said many times here, be proactive in ensuring you have your hospital checks as planned, don't put up with cancellations!

Blindbeggar83 profile image
Blindbeggar83 in reply toSorshup

Can I ask if you have been on tamsulosin?, what is your experience of it and has it had an impact on your glaucoma?

Many thanks

Rob

Sorshup profile image
Sorshup in reply toBlindbeggar83

Hello Rob, yes was on it for years. I am not aware of any ssociation with glaucoma progression, the surgeon conducting cataract or glaucoma surgery just needs to know about it so floppy iris can be controlled. I think I had one cataract and two glaucoma procedures whilst taking it.

If you have joined Glaucoma UK you will have received the Insight magazine containing a long piece about nicotinamide; if not yet a member, do join and request a copy. To precis:- it may be four years before continuing researches reach a conclusion. Just stick to red wine, is my advice.

VerdiG profile image
VerdiG

I’m sorry to hear about your reaction to B3. I have been taking 1000 mg for about 18 months. Upping the dose to 3000 would feel quite extreme although I think in the study they were on that or a higher amount. My ophthalmologist said it was a good idea and for me there have been no issues (female in my 70s). I do think there can be a placebo effect and studies have shown this to be a powerful phenomenon. Also things like meditation can help with lowering eye pressures. Since starting with B3 and changing my way of thinking through meditation and visualisations. My Glaucoma hasn’t worsened. So what works for some doesn’t for others.

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