Does anyone know dosage for vitamin D3 and Coenzyme Q10??

[Iona57]

At my appointment last week my consultant suggested I start taking vitamin D3 and Coenzyme Q10. However he didn't give a dosage and I didn't think to ask. He is on holiday in August so I'm stuck till he is back. Has anyone else been told to try this, and what amount? I know there's a big international study going on with D3, and looks like the dosage for participants is 3000 mg. However the capsules I've bought online are 500 mg and the dosage is one a day, which is quite a difference!

[Iona57]

Oops, I mean B3 not D3!!

[Trish_GlaucomaUK Partner]

Hello,

If a patient’s glaucoma is stable and well maintained, there is no real need to discuss B3 with them as their vision is not being threatened.

B3 is normally discussed with patient whose glaucoma has worsened, despite treatment. Also, this may be discussed with patients after surgery if the results were not as successful as hoped. This is normally when B3 is suggested. There is currently no evidence in humans that B3 is helpful, which is why they are doing the trial.

However, the trial shows that there is good reason to believe that it will be helpful and there are few potential side-effects.

Professor David Garway Heath recommends health4all.co.uk/product/b3...

The recommended dose is 750mg twice a day with food for 6 weeks, increasing to 1.5g twice a day (or a lower dose if this is not tolerated) with food thereafter. As the capsules are 500mg, the initial 6 weeks needs to be 3 capsules a day (e.g., 1 morning and 2 evening or vice versa).

If your consultant has suggested it to you, they should have gone through it with you and why they suggested it. If they haven't, I would it discuss it further with them.

Regarding coenzyme q10. The helpline has contacted consultants in the past regarding this, and they have all come back with the same response of no clear clinical evidence that this has any benefits for people with glaucoma, and would not suggest or recommend it.

Both B3 and Q10 are vitamins/supplements.

[Iona57 in reply to Trish_GlaucomaUK]

Thanks very much Trish. From what you say, I think the consultant suggested it as there was a new bleed evident at the last appointment, so deterioration possible/ probable. I've had them before and they cleared up. He wants pressure down to 10, but was 14. Am on dorzolamide and latanoprost. No change of vision at vis fields test. Every appointment we discuss whether a trabeculectomy is needed yet! I'm seeing him again in 3 months.

[muddledme in reply to Iona57]

Hello Iona57,

Before Preserflo implants in both eyes I used to have regular optic disc bleeds. After surgery they stopped but I started taking 500 mg B3 daily a year or so later, following an interesting webinar.

About 3 months later at a routine check I had another bleed. Side effects of B3 can cause bleeding, so I stopped the drug for at least a year. No more problems and I have recommenced 250 mg daily for 2 days then I leave a day out. My cholesterol used to be high but the Vit B brought it down to normal so as I am unable to take statins I hope this lower dose may still be useful.No further bleeds , but I always ask the optician and at the clinic.

Best wishes

[Iona57 in reply to muddledme]

Hello Muddledme,

Thank you for your reply. It's good to hear that you bleeds have stopped. I'm concerned to hear that B3 may actually cause bleeds. I'll do a bit more research before I increase my dose.

[Extrahelp in reply to Iona57]

Hi IonaYour story sounds a little similar to me.

Unfortunately I'm permanently anxious since surgery was mentioned as a possible course of action last November and a trab was mentioned by a different consultant at my last appt in May.

I was handed the information without discussion so left the hospital in a state...

I rely on my left eye only (lazy eye from birth) as lost total sight in my right eye in a cerebral haemmorage operation in 1998 and possible glaucoma was detected in 2017. Have been on eye drops since but there's a slow progression at some appts..

Pressure is around 14-15 max and needs to be around 10 so although 100% compliant with drops sounds like they're not doing the trick? .

After reading Trish's post in May about Vit B3 and a consultant suggesting to certain patients to trial it I have done the same, building gradually up to the full dose of 3g.

No side effects that I am aware of.

I have my nxt appt at Good Hope nxt week. I guess I should let the consultant know?.I wasnt aware til your post that VitB3 can cause bleeds which I've had a couple over the years..its hard as I haven't built up a relationship with one in particular-different one most visits so don't feel comfortable in showing my fear. But very grateful to be monitored!

The thought of having a trab and possibly losing my present clear 20/20 vision is something I'm struggling to process.

Thank-you for listening..

[Iona57 in reply to Extrahelp]

Hi Extra help,Thank you for your reply. It does sound as if we have some similarities in our conditions. Interested to hear you are getting on ok with the high dose of B3. I haven't worked up to that dose yet.

I hope your appointment goes ok.