Hi all, advice & experiences on suppliments from you good folk would greatly appreciated.
I have RRMS, diagnosed late last year, I’m in Kesimpta injection treatment. I was taking 4000 iu of vitamin D3 oral tablets for a few months on the advice of my MS nurse, but recently changed this to a daily oral spray if 3000iu vitamin D3 + 75 ug K2 conbined as i was worried about the build up of sole use of vit 3 and developing kidney stones etc, following reading a lot of posts on this forum, as nothing was advised about needing to take K2 with D3 from my MS nurse which is a concern. Also i have read that Omega 3 fatty acids (epa & dha) or fish oil (not sure the difference) are essential for MS sufferers along with calcium & magnesium suppliments. I am aware that some of this info has already beed posted previously on this forum, but i have spent hours looking and a lot of the info is from posts of 2020 etc and was wondering if there is an update in the advixe etc. Thanks in advance. P
I think you’ll struggle to find official advice that differs much from that given to the general population. Some neurologists suggest a bit higher D3 than that, I know, but I don’t think even that’s universal. I don’t think there’s much in the way of compelling evidence that taking extra D3 above actually helps very much, that’s the trouble. And maybe that’s because it doesn’t! But it seems to me that we’ll wait forever for large trials to guide us one way or another because where’s the money running such a thing? The only people who have pockets long enough to run such trials are big Pharma and there’s not interested for obvious reasons - no crock of gold for them at the end of it, is there?
I do strongly believe that good food is the mainstay, so my hope is that if we make sure we’re well nourished on good quality food that’s the main thing. If there’s still cash left over to take a punt on supplements, well, it’s a bit like the National Lottery - isn’t it? - it’s nice to have a flutter and who knows we might be in luck. But I do think they’re a little luxury rather than a necessity - or they should be.
As for my own little luxuries, I do similar to you on D3 and K2. I also take an Omega 3 supplement, turmeric extract and a marine collagen extract. Calcium and magnesium I am quite happy that I get enough from food. I have absolutely no idea whether any of the supplements do more than give me expensive pee.
Supplements for MS folk are a bit confusing. There are few hard and fast guidelines although Vit D3 is often recommended . If you live in sunny places however and spend as little as 20-30 mins a day sunbathing your body will make more than enough . In the less sunny places , like the west side of Scotland where I am ‘ I don’t think 4000 units is problematic ( been taking them for years).
My MS Nurse advised caution with calcium supplements. I used to take them from time to time as I don’t eat dairy products.
Eat plenty of oily fish plus some cod liver oil capsules and flaxseed oil. Don’t eat much in the way of saturated fats at all
That’s interesting. Did the nurse say why?
I now can’t remember for sure but it might have been the combination of Vitamin D and Calcium causing excess levels of calcium ( and potentially Kidney stones!).
Her words of caution were enough to stop the calcium supplements and just make sure I was eating plenty of calcium rich foods.
It seems that Prof G agrees with your nurse.
“Please note I do not recommend calcium supplementation in parallel with vitamin D supplementation. As far as I am concerned there is no reason for pwMS to take calcium supplements unless they have thin bones (osteopenia or osteoporosis). If you are taking moderate or high-dose vitamin D and calcium supplements together you will need to have your calcium levels monitored (please discuss this with your HCP).”
An interesting article!
My nurse always asks me what medicines and supplements I’m taking and I do remember her slight alarm when I mentioned calcium
Hi all,
Thanks for the advice. It’s much appreciated. I’m new to any type of forum, let alone this one, still getting used to navigating around it.
The calcium suppliment info I read recently online elswhere was one of the main reasons for my post, I didn’t understand why i would take calcium supplement if there is already a worry of calcium build of from Vit D.
With regards to Omega 3 and Flaxseed supplements, is one preferred for MS than the other or should they both be taken?
As far as other stuff goes, i have completely changed how i eat (no saturated fats and dairy etc) and feel much healthier as a result. just need to get my head around the suppliments. P.
Hey P, you’re doing a great job taking charge of your health—navigating supplements with RRMS can feel overwhelming, but it sounds like you’re making thoughtful choices. Switching from a high-dose D3 tablet to a spray that includes K2 is a smart move, especially since K2 helps direct calcium to the bones and away from places like the kidneys. It’s surprising that K2 isn’t always mentioned alongside D3, but you’re definitely not alone in noticing that gap. Your current dose of 3000 IU D3 with 75 mcg K2 is well within a good range, and checking your vitamin D levels with your GP every now and then can help fine-tune things.
Omega-3s (EPA and DHA) are also highly recommended in the MS community for their anti-inflammatory benefits and support for brain and nerve health—look for a good quality fish oil or algae-based supplement with at least 1000 mg of EPA+DHA daily. Magnesium is another great one, especially for muscle function and sleep (forms like glycinate or threonate are gentle on the stomach). As for calcium, it’s best to focus on getting it from food unless you’re deficient. You might also look into B12, alpha-lipoic acid, or CoQ10 depending on your symptoms. Everyone responds a bit differently, so it’s all about finding what works for you—feel free to bring your supplement list to your MS nurse or GP and have that open conversation. You’re doing all the right things!
Hi Khurram,
Thanks for your reply in such detail.
This forum is very helpful and is helping me take a real positive approach to all this as apposed to utter despair when first diagnosed.
Thanks,
P
Yes, it’s nice to feel that one has some agency again, even in a small way. Not that there’s anything small about Dr Food. By the way, tinned sardines are your friend if you’re avoiding dairy but would prefer to get your calcium from food rather than out of a pill bottle, but I’m sure you know that.
tinned sardines in tomato sauce is frequently on my lunch menu
Hi P,
You’re so welcome, I’m really glad to hear that the forum (and hopefully my reply too!) is helping you feel more empowered and positive. That shift in mindset makes such a huge difference, especially when dealing with something as life-changing as an MS diagnosis. It’s completely natural to feel overwhelmed at first, but your proactive attitude is truly inspiring.
If you ever want to chat more about supplements, lifestyle tips, or just need a bit of encouragement, feel free to reach out. You’re definitely not alone on this path—and you’re doing a fantastic job navigating it. Keep going, one step at a time.