Tag Archives: progressive MS

Lipoic acid for MS

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Hi! Hoping all had a merry Christmas and will have a wonderful New Year, full of everything good, and the strength to do everything possible for vibrant and glowing health and happiness. !

Been asked by lots of people to elaborate on the short report about an easy to get hold of supplement, Lipoic acid, in MS, that was part of this blog post; most importantly, where to get supplies of the dose that was used in the study ( 1,200mg daily).

antioxidant

“Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,1” was reported on by Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, at ECTRIMS 2016.

Pic source:   http://www.desimd.com

Patients in the study had secondary progressive MS, were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6. ( walking with 1 stick)

The trial was randomised; around half (27) took 1,200 mg of lipoic acid, around half (24) took a placebo for 96 weeks, and neither the patients nor the clinicians knew who was taking which. They measured brain atrophy ( shrinkage), which is a way of showing loss of neurones in the central nervous system, and also neurodegeneration in the spinal cord and eye,  neurological functions, cognition, walking, fatigue, and quality of life.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time; brain atrophy was reduced by 66%, almost to within normal limits. Those receiving lipoic acid were also found to walk faster, and had half the number of falls.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems.

The author, Rebecca Spain when interviewed by Multiple Sclerosis News Today, said,

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,”

So; what is the mode of action of Lipoic acid?

Why might it be working so well in MS, and where can you get hold of higher doses?

Lipoic acid is an anti-oxidant, meaning that it helps to protect cells, including those in the brain, against damage from ‘oxidants’, or ‘free radicals’ which are unstable, oxygen-containing molecules, that damage other cells to protect themselves. Free radicals are both produced in the body as a result of metabolism, energy creation and, importantly, inflammation, and also come from environmental factors, such as air pollution, radiation, UV light and cigarette smoke. Anti-oxidants can help to fend off viruses and microbes, but an imbalance, with too many anti-oxidants, has been linked to the development of more than 50 diseases, the most commonly discussed being heart disease and cancer.

eat-a-rainbow

In food, antioxidants are present in various degrees in all plant-based food; a 2010 study analysing the anti-oxidant content of over 31,000 foodstuffs begins  ‘A plant-based diet protects against chronic oxidative stress-related diseases’

and goes on to report a                                                                                  ‘several thousand-fold differences in antioxidant content of foods. Spices, herbs and supplements include the most antioxidant rich products in our study, some exceptionally high. Berries, fruits, nuts, chocolate, vegetables and products thereof constitute common foods and beverages with high antioxidant values. 
spices

So daily diet, as always, is super important, and nothing can replicate the benefits of eating the nutrients from real, fresh food; in this case, berries, fruits, vegetables, herbs and spices. The range is as important as the quantity, so ‘Eat the Rainbow’

But if you want to replicate this study, where participants took 1,200mg of supplemental lipoic acid, you need to find a high dose ( and probably, reasonably priced) supplement. If money is no object, then it’s a good idea to spend more and buy from a reputable, high-end source. If, like me, you need to keep an eye on the pennies, then I’ve done a scout round for cheap, high dose, vegetarian.

I don’t have any vested interest in any supplement companies, and am not qualified to judge their products or to recommend supplements; you always need to take your own responsibility for your choices, based on your condition. However, lipoic acid seems to be a safe supplement.

A scout around the internet produced a few brands that make 600mg tablets, which would give a dose of 1,200mg with 2 tablets daily. I always go for a vegetarian friendly option, and came up with these via Amazon.co.uk

‘Doctor’s Best’ from i-herb, at £8.11 for 60 veggie capsules

and

‘Natrol’ timed release, via amazon, at £9.95 for 60 timed release veggie capsules

I am going to be protecting my brain, I hope you’ll protect yours!

Hope this helps!

all the best,

Miranda
 

 

 

 

 

Biotin for progressive MS – possible new treatment

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Happy spring, everyone! Hopeful news for new treatments for progressive MS recently.secondary progressive MS

First up, Biotin. A new study using this common vitamin reported reduction in disability for 21 out of 23 participants with progressive MS.

Twenty-three consecutive patients were treated with high doses of biotin ranging from 100 mg to 600 mg/day (median=300 mg/day divided in three doses) for 2 to 36 months (average of 9.2 months).  Fourteen patients suffered from Primary Progressive MS and 9 from Secondary Progressive MS. Five patient had visual problems, and 18 patients  had problems with disability related to spinal cord involvement. Assessment was of visual measures, walking distance, EDSS, TW25, muscle strength testing and videotaped clinical examination in a subset of patients; also  fatigue, swallowing difficulties, dysarthria, Uhthoff׳s phenomenon and urinary dysfunction.

21 out of 23 participants showed evidence of improved disability, 2 to 8 months after starting treatment. This was an open study – in other words both the people with MS and their doctors knew what treatment they were receiving; which can bias the results.

Possible modes of action of Biotin were suggested to be: activating the Krebs cycle in demyelinated axons to increase energy production, and assisting in synthesisng the long chain fatty acids that are needed to produce myelin.

Conclusions, of course, are the ‘more research is needed’, and  luckily, two multi-centre double-blind placebo-controlled trials are currently underway.

But to understand more how this information can be used at the current time, let’s look into:

What is Biotin?

foods-high-in-biotin

Biotin is a form of vitamin B, present in many foods and available as a supplement  under many names, including  vitamin B7, vitamin H, biotina, biotine, and coenzyme R.

Biotin works by breaking down food into sugar that the body can use for energy; it’s important for healthy skin and nails, eyes, liver, and nervous system, and sold as a supplement to aid hair and nail growth, at strengths of up 10,000 micrograms.

In this study it was used in such a high dose – 100 – 600 miligrams – ( there are 1000 micrograms in 1 milligram)  that it’s counted as a drug and called MD1003, rather than a nutritional supplement.

Biotin exists naturally in many foods; highest sources shown below:

Interestingly those gut bacteria pop up AGAIN! – Most bacteria in the gut synthesise Biotin, it’s possible that humans make use of the biotin they create, and for those on long term antibiotics or medication designed to manage epilepsy ( and often used for pain in MS), and, in people with neurological conditions such as MS the ability to synthesis biotin can be compromised, and lower levels of biotin than usual were found in the cerebrospinal fluid in one study. Another reason to keep those good bacteria happy!

Food Serving Biotin (mcg) (32, 33)
Yeast 1 packet (7 grams) 1.4-14
Bread, whole-wheat 1 slice 0.02-6
Egg, cooked 1 large 13-25
Cheese, cheddar 1 ounce 0.4-2
Liver, cooked 3 ounces* 27-35
Pork, cooked 3 ounces* 2-4
Salmon, cooked 3 ounces* 4-5
Avocado 1 whole 2-6
Raspberries 1 cup 0.2-2
Cauliflower, raw 1 cup 0.2-4
*A 3-ounce serving of meat is about the size of a deck of cards

Of course, nobody is recommending people with MS go out and take these giant doses of Biotin themselves. However, Biotin is not known to be toxic.On the trial, there were 2 deaths, but from unrelated causes – one heart failure, and one pneumonia.  Oral biotin supplementation has been well-tolerated in doses up to 200,000 mcg/day in people with hereditary disorders of biotin metabolism (1). In people without disorders of biotin metabolism, doses of up to 5,000 mcg/day for two years were not associated with adverse effects (35). However, there is one case report of life-threatening eosinophilic pleuropericardial effusion in an elderly woman who took a combination of 10,000 mcg/day of biotin and 300 mg/day of pantothenic acid for two months (36). Due to the lack of reports of adverse effects when the Dietary Reference Intakes (DRI) were established for biotin in 1998, the Institute of Medicine did not establish a tolerable upper intake level (UL)for biotin (1).

From the MS_research blog of UCL:

Gavin Giovannoni commented:

Please note that OTC (over-the-counter) biotin is not the same as the high-dose, ultrapure, MD1003 formulation. Representatives of the company, developing the drug, have informed me that most OTC vitamin preparations have very little bioactive biotin in them. This is why I would not recommend using OTC formulations unless they are tested and certified to have bioactive biotin in them.

And another interested party added this information:

Doing some Googling, the best guess of what MedDay mean by ‘bioactive biotin’ is d-biotin, one of 8 stereoisomers of Biotin, and the only one to be biologically active (https://books.google.co.uk/books?id=iX3Bm85KQVAC&pg=PA105)

It seems to me that the question is therefore whether a given OTC formulation contain d-biotin or other isomers too.

From further Googling, some of the OTC suppliers/manufacturers claim that their product is d-biotin:

http://www.privatelabelnutra.com/biotin-10000-mcg-p-832.html
http://www.swansonvitamins.com/swanson-premium-biotin-5-mg-100-caps
http://www.toxinless.com/biotin

There is a facebook group where people share information about Biotin for Progressive MS, and presumably, where they have obtained it:

https://www.facebook.com/groups/BiotinForProgressiveMS/

The study itself is a good and interesting read:

Sedel F, et al.

High doses of biotin in chronic progressive multiple sclerosis: A pilot study.
Multiple Sclerosis and Related Disorders 2015;4:159-69.Read the full text

1) http://www.ncbi.nlm.nih.gov/pubmed/10577274
Cerebrospinal fluid levels of biotin in various neurological disorders.
Acta Neurol Scand. 1999 Jun;99(6):387-92.

Drug trials in secondary progressive MS

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Nice to see some drug trials for secondary progressive MS. These are to see if these agents might be ‘ neuro-protective’ – ie, help to save nerve cells, in progressive MS. All drugs have potential side-effects, but amiloride is a fairly old, well known drug that’s been used for a long time for people with a heart condition.

Here’s the web page. Obviously, you need to get really well-informed, and have a very serious discussion about the pros and cons of the treatment and being on a trial, but here’s the website if you’re interested.

University college london University of Edinburgh Edinburgh Clinical Trials Unit Multiple Sclerosis Society National Institute for Health Research

 

 

 

Multiple Sclerosis – Secondary Progressive Multi-Arm Randomisation Trial

The MS-SMART Trial is starting in the autumn of 2013

Multiple sclerosis (MS) is a disabling and progressive neurological disease that affects approximately 100,000 people in the UK.  The secondary progressive (SPMS) stage of disease results not in individual attacks but slow, cumulative and irreversible disability affecting walking, balance, vision, cognition, pain control and bladder and bowel function.

Critically, and unlike early disease, there is no proven treatment for the late stage of MS.  This is therefore an urgent and major unmet health need.  MS-SMART will evaluate three drugs (ibudilast, riluzole, amiloride) all of which have shown some promise in MS and in particular in SPMS against placebo (dummy drug).  The assessments will take place over two years and will include clinical and MRI evaluations.

The main criteria for taking part are:

  • Secondary Progressive MS
  • Not on DMT (disease modifying treatment)
  • Able to walk at least 20 metres (with the support of 2 crutches) or up to 500 metres without help
  • Aged 25-65
The MS-SMART trial is independent research awarded by the NIHR Efficacy and Mechanism Evaluation Programme (EME) and funded by the Medical Research Council (MRC) and the Multiple Sclerosis Society (MS Society) and managed by the National Institute for Health Research (NIHR) on behalf of the MRC-NIHR partnership.  The views expressed in this publication are those of the authors and not those of the MRC, NHS, NIHR, MS Society or the Department of Health.

Are you interested in participating?

MS-SMART will be looking for participants in the autumn.  If you’re interested why not let us know?

A member of the MS-SMART research team will contact you to discuss the trial in more detail.  We will contact you as soon as we can but you might not hear from us immediately.  Progress will be updated on this website.

News

coming soon…