Retinex Max supplements; worth it or a waste of money?

[MikeG1944]

Just returned from second injection of Eylea with no problems so far. Asked nurses if supplements such as Retinex Max (sold by Healthspan) containing Lutein (Free Base) 20mg, Zeaxanthin 2,000ug, Vitamin B2 1.4mg (100% NRV). They said some find it helps but suggested I ask on here. Not too expensive if it's going to help and save the other eye from Wet AMD?

Anyone use it, and any comments?

Thanks Mike.

[Macular_1]

Hello Mike,

The formula you quote for 'Retinex Max' is OK, but not quite what I would expect for a supplement for macular degeneration.

There is a formula recommended by the 'AREDS2' (age related eye disease study), which is on page 5 of our booklet at the following link;

macularsociety.org/sites/de...

There are some supplements available which do meet the recommended formula.

The Macular Society don't like to promote individual brands, but they are available from pharmacists, on-line and from some supermarkets.

I hope that this helps.

Best wishes

Macular Society

[MikeG1944 in reply to Macular_1]

Thanks Macula_1; I would have to consult my GP before deciding on which formula as I am on a lot of other medication. I have a little Wet AMD in the right eye and a very small amount of Dry AMD in the Left, fortunately not that serious at the moment, so according to the info on your Nutrition page it would seem it may be worth taking.

Incidentally the bubble which lasted till this injection 5 weeks after the first is not unusual according to the consultant, and nothing to worry about. The big one I had after the injection today seems to have disappeared already and the original one may have gone as well. Just waiting for the mist to completely disappear before knowing for sure.

Thanks Mike.

[Hidden]

Care needs to be exercised before taking some of these supplements. At least one commonly used one, I don’t take any and unfortunately have not retained the name, contain zinc and can be a serious issue for anyone with zinc intolerance. A check with your GP before purchasing would be very wise.

[MikeG1944 in reply to Hidden]

Rennatk; yes I am in the process of asking the doc if these are safe for me. The normal recommended one, The AREDS2 formula:

Vitamin C 500mg, Vitamin E 400 IU, Copper 2mg, Lutein 10mg, Zeaxanthin 2mg, Zinc 25mg is the one you are probably thinking about, and goes under several trade names. I have a feeling it is not recommended to be taken with one or more of my regular prescriptions. I think they may help me if I can take the Retinex Max as long as it's safe. That one doesn't contain zinc.

[Hidden in reply to MikeG1944]

Glad that you are getting them checked out first.

I vaguely recall that the potentially problematic one was described as the “Gold” version in a range of 2 or 3 available from the same manufacturer.

[Hidden]

I take Macushield. Has lutein, zxeanthen and mesozxeanthen only.

Get it prescription from gp or buy when boots do 3 for 2.

[ANGIEIRISH]

I take Viteyes on a recommendation from my consultant for WMD.

[MikeG1944]

Thanks folks I am combining all this info to pass on to my GP; if the basic Macushield can be prescribed from the GP that may be the one I will go for as it contains just the basic ingredients that are the most needed. Will let you know how I get on.

[Georgie_M]

Hi MikeG1944! Please let us know if your GP will prescribe Macushield - my GP won't prescribe any supplements, including the AREDS 2 supplements recommended for AMD!

[MikeG1944]

Hi Georgie_M; I handed a letter into my Health Centre in Cambridgeshire for the GP's perusal on Friday and awaiting a reply; probably in a few days. I'll certainly post the reply on here. I'm hoping that they will prescribe it free, but all areas have their list of medication they will prescribe; it's the postcode lottery again. However if you shop around you can find Macushield fairly cheaply; at a cost of around £6+ a month and some USA trials seem to say it can delay AMD by up to 25% so I'd say it would be worth it.

[Aud1950]

I buy Macushield from Amazon. Cheapest around.

[Hidden]

Just to follow up on my macushield post. Gp has set criteria to prescribe. I'm not certain what it is but suspect eye condition being " active" is part of it as I get it prescribed but my hubby doesn't ( he had retinal artery occlusion and is essentially blind in one eye, no treatment available). Hence my buying it to help keep his good eye ok.

I have brvo with macular oedema don't know if that makes a difference in getting prescription or not.

I wasn't offered it, I just asked on the off chance. Very glad the answer was yes! I think the govnmt are reviewing what supplements are available.......bound to be a smaller list.

[MikeG1944 in reply to Hidden]

Still waiting for a reply from GP; I think it may have been his week off last week; will update when I get it.

[marianS]

Dear MikeG

You will be disappointed to know that it is unlikely that you GP will prescribe any nutritional supplements, including the AREDS2 versions, as these are being blacklisted by the NHS along with some other items. You can read about the guidance given to Clinical Commissioning Groups at the end of 2017 on P21 of this document link:

england.nhs.uk/wp-content/u...

New NHS NICE guidelines for AMD (both types) came out in Jan 2018, and despite our Society contributing to the consultation process in support of including AREDS2 supplements being available to those with certain stages of the dry type, it was not included. Ophthalmologists are divided in their opinions on how effective this is, as there is only 1 research trial and the evidence was weak.

This decision is also based on cost effectiveness as well as (lack of) evidence base.

We recognise the disappointment this is to folk who may wish to take as they may prove beneficial, but these supplements may be prohibitive in cost. However, these and other non-AREDS formula supplements, which are often cheaper, are still available to buy.

Please see our leaflet for more information if needed:

macularsociety.org/sites/de...

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments and you can join by following this link:

macularsociety.org/6monthst...

Please do not hesitate to contact us if we can be of any further help , either by email or ringing the Macular Society helpline which is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

The Macular Society

[MikeG1944 in reply to marianS]

Thanks marionS; I wasn't overoptimistic about getting them free on the NHS but thought it worth asking. I know many areas have different lists of what they will supply but I guess if NICE says no then there's not much chance. Will probably go with Macushield if I have to buy them myself as they are relatively inexpensive and contain the basic ingredients needed.

[marianS in reply to MikeG1944]

Hi again MikeG

You are right that there were differences between areas, whether by accident or design, but one product did get a Prescribing Authority license in Dec 2016, and we started raising this awareness. It was still, however, at the doctor's discretion as the supplements were called Borderline substances and could only be prescribed within certain limitations or conditions. Now the blacklisting move has over-ridden that.

I wish you well, whatever you decide to do, noting that you are aware to check with your GP that there are no interactions with any other medication you take.

Regards.