Do you use supplements?

D

Your body is a temple; or we’d like to think so, but even the most educated of us are susceptible to adding floors and basements to our temple with various additives and dietary quirks. Logic tells us that beyond fatty acids and vitamin D the rest is just fru fru, kitsch to our Id.

It is not uncommon for me to get through an MS clinic without someone inquiring about diet or vitamins. So I thought it would interesting to see what were popular in MS.

In a study from Denmark 380 participants with MS were asked about natural and dietary supplement (NADS) use over the last 12 months. The study population were majority female, 40-60 years old, with relapsing-remitting MS and had MS for more than 10 years.

In total, 88% used conventional medicine; of which 52% were on disease modifying treatments. Whilst, at least 85% used at least one NADS with vitamin D being the most popular. When vitamin D was excluded fatty acids was the second commonest NADS used (see Figure below). In contrast, only 6% used NADS exclusively to treat their MS.

The reasons for NADS use were as follows:
– used to strengthen the body (86%)
– based on recommendations by others (71%)
– to feel more involved in one’s own treatment (49%)
– to ease MS related symptoms

https://ars.els-cdn.com/content/image/1-s2.0-S221103482030273X-gr5_lrg.jpg
Figure: Other types of NADS used within the past 12 months.
* Other herbal remedies include e.g. ginseng, garlic, rosehips and turmeric (Used by less than 1%).

Abstract

Use of Natural Medicine and Dietary Supplements Concomitant With Conventional Medicine Among People With Multiple Sclerosis

S O BergienC M PetersenM LynningM KristiansenL Skovgaard

Background: The use of complementary and alternative medicine (CAM) are widespread among people with Multiple Sclerosis (PwMS) and are often used concomitant with conventional treatment. Natural medicine and dietary supplements (NADS) are the most frequently used CAM modality and among other patient groups use of NADS concomitant with conventional medicine has been reported as a potential risk to patients’ safety due to risk of drug interactions. The use of NADS concomitant with conventional medicine has, however, not been investigated among PwMS. This study’s aim was to investigate the prevalence of NADS and conventional MS-related medicine use among PwMS, specific types of NADS and conventional MS-related medicine used, the prevalence of NADS used concomitant with conventional MS-related medicine, and to characterize PwMS who use NADS and PwMS who use NADS concomitant with conventional MS-related medicine in a Danish context.

Methods: The study was a cross-sectional study conducted as an interviewer-administered survey via phone in April 2019. The questionnaire includes questions about the use of NADS and conventional MS medicine as well as sociodemographic and health-related factors. In total 384 PwMS answered the questionnaire. Both descriptive and logistic analyses were used to analyze the data.

Results: The results show that the majority of PwMS use conventional MS-related medicine. In total, 85 % (n=322) had used at least one NADS within the last 12 months including vitamin D. When excluding vitamin D, the use of NADS within the last 12 months was 78.4% (n=298). Beside vitamin D the most reported types of NADS used were fatty acids (37%), Multivitamins (37%), and Calcium (35%). A total of 75.8% (n=288) reported using NADS concomitant with conventional MS medicine, and the products most often combined with conventional MS medicine were Vitamin D, Multivitamin, Calcium, Magnesium, and fatty acids. The results suggest that PwMS using NADS concomitant with conventional MS-related medicine are characterized by a high prevalence of young and newly diagnosed patients with a high education level.

Conclusion: The study contributes to a better understanding of NADS used among PwMS. The study shows that the majority of PwMS use NADS and that they use it concomitant with conventional MS-medicine. Furthermore, the detailed mapping of the specific types of NADS used gives a nuanced insight into the specific products of NADS used among PwMS, including different kinds of vitamins, minerals, and herbal remedies.

About the author

Neuro Doc Gnanapavan

21 comments

      • Video

        https://onlinelibrary.ectrims-congress.eu/ectrims/2016/32nd/147064/lipoic.acid.for.neuroprotection.in.secondary.progressive.multiple.sclerosis.html?f=m3

        Paper

        Lipoic Acid in Secondary Progressive MS: A Randomized Controlled Pilot Trial

        https://pubmed.ncbi.nlm.nih.gov/28680916/

        https://pubmed.ncbi.nlm.nih.gov/31056714/

        Oxidative stress (OS), when oxidative forces outweigh endogenous and nutritional antioxidant defenses, contributes to the pathophysiology of multiple sclerosis (MS). Evidence of OS is found during acute relapses, in active inflammatory lesions, and in chronic, longstanding plaques. OS results in both ongoing inflammation and neurodegeneration. Antioxidant therapies are a rational strategy for people with MS with all phenotypes and disease durations. PURPOSE OF REVIEW: To understand the function of OS in health and disease, to examine the contributions of OS to MS pathophysiology, and to review current evidence for the effects of selected antioxidant therapies in people with MS (PwMS) with a focus on lipoic acid (LA). RECENT FINDINGS: Studies of antioxidant interventions in both animal and in vivo models result in reductions in serum markers of OS and increases in levels and activity of antioxidant enzymes. Antioxidant trials in PwMS, while generally underpowered, detect short-term improvements in markers of OS and antioxidant defenses, and to a lesser extent, in clinical symptoms (fatigue, depression). The best evidence to date is a 2-year trial of LA in secondary progressive MS which demonstrated a significant reduction of whole-brain atrophy and trend toward improvement in walking speed. Antioxidant therapy is a promising approach to treat MS across the spectrum and duration of disease. Rigorous and well-powered trials are needed to determine their therapeutic benefits.

        Classification of evidence: This study provides Class I evidence that for patients with SPMS, LA reduces the rate of brain atrophy.

        For the mavens

        🙂

  • I’m on Ocrelizumab. I’m not on any diets. I am skeptical if any of the supplements I take work and they are likely fufu but desperation makes people do silly things sometimes. I will say that I often got numerous upper respiratory illnesses every year that would linger for weeks, but since since taking these supplements I haven’t got so much as a sniffle in the past 2 years. The thing that likely helped the most was trying to make self-Isolation and hand sanitizing cool before covid ever came about. My daily regimen is as follows:

    5000iu Vit D,
    4000iu Vit C
    Cranberry extract
    magniesum,
    Turmeric
    Biotin
    Collagen powder
    1 emergenC packet

    • That’s quite a list, maybe someone should create a mega vitamin. Or is the effect lost if combined?

  • I admit, I have added a number of supplements over the year and a half since diagnosis. I’m currently taking omega 3, vitamin D, vitamin K2, magnesium, CoQ10, lipoic acid, a little cannabis. And I just added B12/folate since noticing that my MCV has been creeping up to the upper limit of normal. Looks like I hit a number of the NADs listed in your graph, but I can’t say I ever heard that ginger would do much good, although it is delicious! 

    • I remember reading about this research. Do your neuros provide it to you, or if not may I ask where you get it?

      • I order this online from the manufacturer (Navimol), but they only seem to ship to Germany and Austria. Maybe check with a compounding pharmacy? Sodium propionate is cheap. but it tastes like licking the armpit of someone that hasn’t washed for years, so you really want it in a capsule.

  • I take prophylactic d-mannose twice a day 3g as for recurrent UTI, which fingers crossed, is giving me benefit. Particularly important as a lot of infections now seem to becoming increasingly antibiotic resistant, Unfortunately at the moment there only seems to be one supporting study: Kranjčec, Papeš & Altarac, World Journal of Urology volume 32, pages79–84(2014), which is not enough for NICE approval. Therefore it is still classified as a food supplement and not eligible for NHS prescription, which does restrict it’s use to those who can afford it, as is quite expensive.

    • P is correct.

      NICE guidelines include d mannose as a home remedy that people may wish to try. But will not recommend prescription.

      From my own personal experience I take 1g daily as prophylactic for recurrent UTI and haven’t needed any antibiotics since starting 2 years ago. If I feel start of symptoms I’ll increase to 3g daily for 1 week and symptoms disappear.

      They are expensive but it is well worth the investment for my health

      I just wish there could be more research into this brilliant substance so that it could be prescribed as as an alternative to antibiotics.

  • What are NADS or any of the other Abreviations. I am not health specialist nor a dr.? Can you supply at least a legend?

    • Natural medicine and dietary supplements (NADS) – this was provided by the authors of this work and not one I’ve used before. We try and put abbreviations within brackets whenever possible, but let us know if there’s one we left out.

  • Interesting read thank you. i am doing something similar in Cancer patients, in South Africa. Would you mind sharing your questionnaire with me?

    • The authors do not provide the questionnaire in the publication, it was open-ended interview based. It may be worth contacting the authors directly to obtain this.

      What is published in the methods is as follows:
      The questionnaire was developed by the authors in collaboration with professionals representing conventional as well as complementary medicine, including a neurologist, a biopath and a naturopath. Prior to developing the final questionnaire, five cognitive interviews and five pilot interviews were conducted among a purposive sample of PwMS to test whether they understood the questions and specific terms as intended (Willis and Artino, 2013). Key themes in the questionnaire were socio-demographic and health related factors, use of conventional MS-related medicine and NADS, reasons for using NADS, and knowledge about potential interaction between NADS and conventional medicine. Socio-demographic factors included age, gender, education level, and household income. Items concerning health related factors and MS characteristics included type of MS diagnose, duration of MS diagnosis, number of co-morbidities, and visit frequency to a Danish MS clinic. Self-reported health was measured using items from The National Representative Health and Morbidity Studies (Ekholm et al., 2009). Use of conventional medicine was covered by nine closed-ended questions. One question concerned the use of DMT, seven questions explored medical treatment of nine MS related symptoms, and one question concerned the use of conventional medicine due to side effects from other MS-related medicine. Questions concerning use of NADS were designed as open-ended questions. No categories were predefined, but the interviewers were instructed to ask for and write down both the name, manufacturer, and strength of the product to make sure the right product was registered. Furthermore, a definition of NADS, including examples, was read to the participants to make sure they understood the terms. The final survey contained 213 questions in total and took 20 to 40 minutes to complete. As PwMS can experience cognitive difficulties, an interviewer-administrated survey via phone was used instead of a written, self-administered questionnaire to attenuate the cognitive burden on the participants (Bowling, 2005; Skovgaard, 2016). All participant received an e-mail, a letter, or a text message with information on the study, a request to prepare for the interview, and a link to register for a day and a time slot to be interviewed. Furthermore, it was possible to answer the questionnaire in a two-stage process, to make it less burdensome for the participants. All questionnaires were collected over four weeks, and calls were attempted up to five times before a participant was excluded. Calls were made between 9.00 AM and 9.00 PM, and all answers were registered by the interviewer using the online survey software SurveyXact during the phone call.

  • Biotin, vitamin d, magnesium, b1, b12, Daily

    I live diary free, and eat little meat, but plenty of fish….

    I eat huge amounts of fruit , so don’t feel the need for vit c but do in the winter, to keep the colds at bay…

    As another poster wrote, I’ve been living in a Covid 19 way (except the mask) for years now.. I have almost ocd level of hand hygiene, don’t touch my face after becoming tuned into my actions etc… I don’t see it as bothersome and I haven’t been sick for a long time… so I think it’s worth it..

    Do you. Take any supps doc ?

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