Are nutritional supplements a waste of money?

A

Do you take dietary supplements? If yes, are you prepared to review what you are taking and ask yourself if you need to spend the money taking something that is not supported by any evidence?

In the US the Food and Drug Administration (FDA) has recently announced measures to regulate dietary supplements.

The FDA Commissioner Scott Gottlieb said: “It’s clear that the US Food and Drug Administration plays an important role in helping consumers make use of safe, high-quality dietary supplements while also protecting Americans from the potential dangers of products that don’t meet the agency’s standards for marketing. He continued: “I’m concerned that changes in the supplement market may have outpaced the evolution of our own policies and our capacity to manage emerging risks. To continue to fulfil our public health obligations we need to modernize and strengthen our overall approach to these products. Toward these goals, the FDA is committing to new priorities when it comes to our oversight of dietary supplements at the same time that we carefully evaluate what more we can do to meet the challenge of effectively overseeing the dietary supplement market while still preserving the balance struck by Dietary Supplement Health and Education Act.”

The FDA’s priorities will include (1) communicating better about safety issues related with dietary supplements and (2) establishing a regulatory framework to promote innovation, as well as upholding product safety and (3) creating new strategies of enforcement.

Earlier this month, the FDA posted 12 warning letters and five online advisory letters to US and international companies, which are illegally selling more than 58 products, primarily dietary supplements, as treatments for serious health conditions, when their safety and efficacy is unknown.

Gottlieb stated: “Science and evidence are the cornerstone of the FDA’s review process and are imperative to demonstrating medical benefit, especially when a product is marketed to treat serious and complex diseases like Alzheimer’s. Alzheimer’s is a challenging disease that, unfortunately, has no cure. Any products making unproven drug claims could mislead consumers to believe that such therapies exist and keep them from accessing therapies that are known to help support the symptoms of the disease, or worse as some fraudulent treatments can cause serious or even fatal injuries. Simply put, health fraud scams prey on vulnerable populations, waste money and often delay proper medical care – and we will continue to take action to protect patients and caregivers from misleading unproven products.”

The advice above applies to people with MS. We have no evidence that pwMS need to take any supplements. If you eat a healthy balanced diet, for example the Mediterranean diet, you don’t need supplements. The only supplement I routinely recommend to my patients is vitamin D (vD). Why? There is no evidence that vD makes any difference to the outcome of your MS, but it has a role to play in bone health. We know that pwMS are more likely to have thin bones (osteopenia and osteoporosis) and are much more likely to suffer falls and fractures. Extrapolating data from the studies in elderly women we recommend pwMS keep themselves vD replete. We also know that the vast majority of our patients with MS are vD insufficient or deficient. Why? They don’t get enough sunlight exposure to manufacture their own vD in their skin or enough vD from their diets. Recommending vD supplementation is therefore not really evidence-based; we need to do trials to see if it helps prevent fractures in pwMS.

Please let us know what supplements you are using and who recommended them?  We really need to debate this issue. Too many of my patients can’t afford to make ends meet; not wasting money on unproven supplements is one-way of saving money.

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

49 comments

      • Neither is the Vit D licenced. Whilst my neuro advised taking it, I obtain mine via that well known online retailer, and I can’t imagine I’m not one of many to do so.
        The FDA stance is commendable, but comes so ridiculously late in the game.
        Focus should also be given to ensuring that supplements such as lipoic acid are rapidly licenced so that all those with relevant conditions can guarantee to obtain valid products. In the meantime, why not check out the efficacy and safety profiles via reliable sites such as nih, cast the the suppliers net wide to try and achieve consumption of some reliable products, and as always hope for the best? Personally I’d rather know I might be benefitting from something like lipoic acid than waste valuable peace-of-mind wondering if I am missing out.
        I am equally persuaded by the diet and exercise perspective and seeing the studies concerning exercise and MS has had me up my visits to the gym.

      • Of course they are not licensed. Nor they will be, there’s no profit in this, so Pharma won’t much it with a ten foot pole. All that we can do is gather a few academic led trials and deduce its effect/safety.

        And don’t forget that in some countries they are available for free with a prescription (eg. Lipoic Acid for diabetes neuropathy in Germany, IIRC). If it’s beneficial there, why can’t it be beneficial in MS? If we’re repurposing drugs from oncology, why not from other fields?

        I know you’re in a tight spot and can’t endorse/recommend supplements across the board, as it’s true that a lot (most?) of them are rubbish. But sometimes even smaller effect can be beneficial to a patient, especially if there are no SAEs and they are cheap.

        What did MouseD’s White knight Cladribine campain say? Don’t throw the baby out with the bathwater.

          • Here´s a trial

            Conclusions: LA demonstrated a 68% reduction in annualized PCBV and suggested a clinical
            benefit in SPMS while maintaining favorable safety, tolerability, and compliance over 2 years.
            ClinicalTrials.gov identifier: NCT01188811.
            Classification of evidence: This study provides Class I evidence that for patients with SPMS, LA
            reduces the rate of brain atrophy. Neurol Neuroimmunol Neuroinflamm 2017;4:e374; doi: 10.1212/
            NXI.0000000000000374

          • here´s another (

            Lipoic Acid Affects Cellular Migration into the Central
            Nervous System and Stabilizes Blood-Brain Barrier Integrity1

            J Immunol 2006; 177:2630-2637; ;

          • Lipoic Acid Stimulates cAMP Production in Healthy Control
            and Secondary Progressive MS Subjects

            Here another in humans

            and another

            Effects of lipoic acid on migration of human B cells and monocyte-enriched
            peripheral blood mononuclear cells in relapsing remitting multiple sclerosis

            https://doi.org/10.1016/j.jneuroim.2017.12.009

            a-lipoic acid protects rat cortical neurons against cell death
            induced by amyloid and hydrogen peroxide through the Akt
            signalling pathway

            Neuroscience Letters 312 (2001) 125–128

            Does lipoic acid consumption affect the cytokine profile in multiple sclerosis patients: a double-blind, placebo-controlled, randomized clinical trial.

            https://www.ncbi.nlm.nih.gov/pubmed/24821457

            Aparently your statement its no correct

          • Yep, we could ignore the patent, but getting a drug licensed is a way of getting it adopted as a treatment for MS.

          • I believe that even the trial that just CONFIRMS findings is extremely useful service to pwMS!

            As ALA is cheap and already widely used/available, there won’t be any money in it anyway. Maybe we could even crowdsource the costs.

      • Your “right arm”

        MouseDoctor
        November 30, 2018 at 9:45 pm

        There is not point in imagining..pharma wont touch this with a bargepole

        Now to your wish about “neuros and the MS Societies” I can’t say anything but you would be wrong to suggest that they are not talking about lipoic acid.

  • Thank you for this. I take a multivitamin and extra vitamin D – only recently and only because I’d read about the benefits of vitamin D and also B12 for brain health.

    Have been toying with the idea of turmeric powder, which seems to have gained a lot of popularity recently for various conditions, including auto-immunity, as a natural anti-inflammatory. Any thoughts?

    I can afford supplements, but resent the opportunity cost, especially where there’s a lack of evidence of effectiveness. The same money could be spent on exercise classes, swimming, a massage or could even go in the holiday pot!

  • Please can you give more info on your comment that pwMS have thin bones. I have recently had a full hip replacement after a fall – diagnosed with MS 15 years ago and having DXA scan next week. Thanks

  • Hi
    I have RRMS diagnosed Sept 2017 and have had 2 courses of lemtrada one in Nov 2017 and Nov 2018. I take daily 8000iug vitamin D, coq10, vitamin B, COD liver oil, magnesium and a good multi vitamin.

  • Just wanted to say the layout of the new blog isn’t working for me as I often don’t get to check it daily. This means when a new article is posted the one before it gets categorised and archived and so I miss out on the postings that I don’t happen to see if I don’t just manage to catch it before the next one appears. I like to scroll through the blog posts chronologically which isn’t possible anymore. Is there any way you can keep up the most recent eg 5/10 blog posts before archiving them? Thanks

    Ps I take 5000iu vitamin D per day and a hair loss supplement due to bad Tecfidera hair loss

  • Vitamin D and calcium supplements. I already have osteoporosis at a relatively young age (it runs in the family). My doctor checks my blood for levels of both at my annual exam.

    Reading this blog back in the CCSVI era reshaped my attitude about alternative treatments completely, including supplements. These days, I’m mostly interested in vegetables, fruits, lean proteins, whole grains, water, exercise, and the strongest DMT I can get my insurance company to approve.

      • I take vitamin d (8000 in winter, 4000 in summer) and probiotic which I’ve found helpful in preventing infections (causes by my DMD). I used to take flaxseed oil (recommended by overcoming ms book) but have stopped due to the horrid taste! If there is any hint of a supplement helping improve symptoms i am willing to try it!

        • Flaxseed oil NEEDS to be fresh. Consume it in 2 weeks after opening and store in the fridge as it gets rancid quite quickly in warm temperatures. Buy from stores where they maintain it properly (dark bottles, not in direct sunlight, etc.). Don’t buy old oil (look at the date of the cold pressing on the bottle). Use it on the salad together with a little amount of some other oil you like (e.g. pumpkinseed oil). All in all, flaxseed oil is much cheaper than fish oil (I assume you’re consuming it because of Omega3?).

  • A better question, that should be concerning for neurologists, is why are patients seeking their own answers through alternative therapies?

    It is because conventional medicine (ie. DMDs) have failed almost every progressive MS patient miserably with no hope on the horizon.

    If your family member or yourself had this horrible disease in a progressive form today, not 20-30 years from now when something is available at your pharmacy, wouldn’t you also seek answers through incomplete phase I or II trials or even anectdotal studies? Or would you still sit there and continue to preach that science takes time?

    • The issue I am raising is affordability; most of my patients are unemployed and poor and often on state benefits. They can’t afford the increasing costs of nutritional supplements and most other alternative and/or complementary therapies. Then there is the science, which is why the FDA is stepping in because a large number of manufacturers are taking vulnerable people for a ride with false claims.

      But I suspect you would argue now that we are in the post-truth era, and expert opinion doesn’t count for much, anything goes?

      • Please note the use of off-label DMTs such as cladribine is not in the same class as off-label nutritional supplements. We don’t ask our patients to go out of pocket to receive sc cladribine. However, this may be different in other countries and with expensive biologicals.

    • But that doesn’t help the average unemployed person with MS living in the UK. This would have to get it on a private prescription as the NHS won’t pay for most off-label treatments. This is why we need to do large phase 3 trials to get the drug licensed for MS so that it can be assessed by NICE and if cost effective then we can prescribe it under the NHS. If we don’t get it through this process it means only people with money can afford it. There are also many complex hurdles for providing private prescriptions if you work in the NHS. I have posted on this before. In short, we are not allowed to write private prescriptions if we are NHS employees; if we do we have to take responsibility for managing these patients outside of the NHS.

      • Your position statement is that PwMS don’t need supplements if they eat a good Mediterranean diet. Evidently this is different to saying that your key point is solely one of affordability. Added to which there is evidence for some supplements.
        Thus far the survey shows that almost 100% both take and can afford supplements. Thanks to those in the know such as Luis the rest of us are made aware of the evidence of benefit of some supplements such as LA and today I learn it on prescription in Germany, albeit not for MS.
        So, in short the survey results would suggest that clinical advice would be best placed in advising which supplements and why. For those who are unemployed/low income this might include avoiding pitfalls of dodgy online sites and more reliable cost effective places to purchase. To ignore, or gainsay, the reality concerning supplements, so blatantly apparent from the survey, is to risk unintentional harm.
        This is why I wish that more was done in support of facilitating the best and safest use of supplements by neuros and GPS etc.

    • There are foods which contain some LA: brewers yeast, certain meats (although I’m vegetarian), and some green vegetables… to name a few. So having a healthy diet (for me minus the meat) might help. It would be interesting to find out which foods contain the highest amount of LA.

      • Lipoic acid is present in almost all foods, but slightly more so in kidney, heart, liver, spinach, broccoli, and yeast extract.[17] Naturally occurring lipoic acid is always covalently bound and not readily available from dietary sources. In addition, the amount of lipoic acid present in dietary sources is very low. For instance, the purification of lipoic acid to determine its structure used an estimated 10 tons of liver residue, which yielded 30 mg of lipoic acid.[18] As a result, all lipoic acid available as a supplement is chemically synthesized.

        Wikipedia

    • Yep!

      I’m so committed to lipoic acid though I wouldn’t want to be randomly assigned in that study.

      For those of us that can afford it — supplements like r-lipoic acid, high-quality curcumin, Mito-Q, magnesium, Vit D, taurine, NAC, high quality fish oil and probiotics, etc. — may help. There are mixed studies discussing melatonin, but I take it regularly.

      Only the Mito-Q is really expensive.

      Also you can save money by (1) cutting out all processed food and sugar, (2) fasting periodically, and (3) following a healthy diet that makes restaurants less viable.

By Gavin

Translate

Categories

Recent Posts

Recent Comments

Archives