Which supplements do you take?
(It being assumed that you must take something…)

And are you making any changes to prepare for alemtuzumab?

I always have supplement-inferiority in MS chat forums, because everyone seems to be taking something amazing – Vitamin B12, Vitamin D3, Vitamin K2, Magnesium, Calcium, Evening Primrose Oil, Turmeric, Probiotics, Selenium, Cod Liver Oil… the list goes on. Everyone seems to have a few favourites that they swear by.

You ask yourself – should I be taking that too? Should I take more than I do? I get leg twitches, maybe magnesium would help. I get fatigue, maybe Vitamin B12 would help.

Maybe it would.

Let me tell you about Cochrane. This is an organisation that carries out systematic reviews of healthcare studies – a Cochrane Review is widely acknowledged as the best assessment you can get of the state of evidence on a particular healthcare question. I love Cochrane. They identify every good quality, reliable study on the question, and carry out meta-analysis to determine what the evidence really, really adds up to. The Cochrane methodology is highly respected. If I were a scientist, this is the science I would want to do.

So whenever I am feeling wobbly about what supplements I should be taking, or any other healthcare decision I find myself having to make, I toddle over to the Cochrane website to see what the evidence really, really says.

I found a couple of Cochrane reviews relevant to the supplements issue:

The “Dietary interventions” review looked for good quality evidence about benefits or harms associated with dietary interventions including the special “MS diets” and the various often-touted “necessary” supplements like magnesium, vitamin D etc etc etc.

Although a massive amount of data has been published in this area, only six controlled studies on PUFA [polyunsaturated fatty acids], comprising a total of 794 patients, met the inclusion criteria in terms of methodological quality for this review. No studies on vitamins and antioxidant supplements were found that met our criteria. No papers on any other proposed dietary interventions for MS were found after extensive searching of the scientific databases.

There was some modest evidence of possible benefit for PUFA (essential fatty acids like linoleic acid, which is what you get from evening primrose oil) – but not enough to draw any definite conclusions.

But no proper, good quality studies on anything else – the authors conclude “more research is needed…”

What – even Vitamin D? But everyone takes Vitamin D! In nice big doses! The more the better! The review that was specific to Vitamin D found one relevant study, with possible benefit indication – but this was of uncertain quality as the methodology was not sufficiently reliable:

The current level of evidence from this review is based on only one trial with potential high risk of bias, which does not at present allow confident decision-making about the use of Vitamin D in MS.

I also looked for a review about supplements, or other complementary / alternative therapy, specifically in the context of MS patients being treated with alemtuzumab, but drew a total blank. Even Google had nothing to offer, which surprised me a little given that alemtuzumab has been used as a leukaemia drug even before it was licensed as an MS therapy.

So what should an MS-er do?

Just because there is no reliable proof that something works, and no strong evidence in its favour, doesn’t mean it won’t help. Maybe it does work – there’s certainly no proof to the contrary. So maybe some of it is worth a try? Maybe.

My neurologist told me soon after diagnosis that, because there was modest evidence potentially pointing to benefits for Vitamin D and for Evening Primrose Oil, it “couldn’t hurt and might help” to give those a try.

I thought I might as well, especially as my initial panel of blood tests came back as deficient for Vitamin D (like much of the UK population!)

[To note: no particular dosage was recommended – and nothing in the scientific evidence could point to a definite recommendation. Specifically there is no reliable evidence for the rather high doses of Vitamin D that some decide to take. The one study that Cochrane considered worthy of analysis does not provide good evidence for any specific dosage.]

The placebo effect has to be taken into account, too. I’m a strong believer in the power of placebo. But I loathe the profiteering that is made of placebo – extortionate cost for supplements and alternative “therapies” that have no proven effect beyond placebo just makes my teeth itch.

So my thinking is – if I’m spending up to about a fiver a month on supplements, why not? But more than that, with no proper scientific evidence, and as far as I’m concerned you might as well try witchcraft.

For what it’s worth, my regime is:

  • Multivitamin with iron (supermarket own brand, £1 a month)
  • Vitamin D (25 ug / 1000 iu, £1 a month)
  • Evening primrose oil (1000 mg, £1.50 a month)
  • Turmeric with piperine (600 mg, £1.50 a month)

Total – five quid. That’s my limit.

The turmeric is my personal witchcraft. It comes in a translucent capsule, and you can see the witchy powder through the capsule shell. It’s orange and it tastes faintly spicy.

[There is a Cochrane Review for turmeric as it happens – Curcumin for maintenance of remission in ulcerative colitis – curcumin being the active compound in turmeric. Ulcerative colitis is not MS, but it is a relapsing-remitting inflammatory condition widely thought to be auto-immune in origin, so commonalities do exist. The Cochrane review found modest evidence to support curcumin as a therapy that may reduce disease activity and relapse rates for UC, albeit needing further research. It’s a good enough reason for me to plump for curcumin as my choice of cauldron fodder.  If it does one day turn out to have benefits relevant to MS in a proper scientific study then I might just get me a broomstick… :)]

The only possible changes to my choice of supplement regime that would make any sense to me are ones that might improve my recovery after alemtuzumab.

I have heard that a slow recovery of the immune system is associated with better outcomes. (To note “I have heard that” is not the same as “there is evidence that”! I have not researched this properly.) So a supplement that will or even might accelerate the recovery of my immune system does not seem like an obviously good idea.

Based on this (fairly unscientific) thought process, I may consider cutting out the multivitamin during the post-treatment period as it contains stuff like Vitamin C which is supposed to improve the immune system. On the other hand, I take the multivitamin for general health juju rather than any specific reason, so I may decide to just keep taking it for general health juju… Meh.

I am not agonising about it either way, because there’s basically no evidence and whatever I do will only be guesswork.

Edited to add: Follow-up post on immune recovery with my decision on the multivitamin question.


One thought on “Supplements

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s