PPMSers... are you taking high dose Vitamin D3?

Just interested to know if any of you are taking Vit D3 and if you notice any difference?

I got the high dose one, 5000 iu a day… but only taking it a couple of times a week as seems to make me feel worse!

Is it just me?

Should I persevere & try to take it daily?

Pat x

If it makes you feel worse Pat, I wouldn’t take it daily. Why not not increase it little by little? Do it 3 times a week for a while and then 4 for a while and so on. Don’t make life harder for yourself though. You know your limits! Teresa xx

I have been taking 5000 IU for years and confess I have not noticed any difference. Still, it is beneficial for a variety of conditions, so don’t intend stopping.

It might be worth getting your GP to check your levels, but reducing the amount seems like a smart move to me. We can do without feeling worse, can’t we?

I expect you have already seen this site, but just in case.


This page is probably more appropriate.



Spoke to my GP and he has recommended I have a blood test for levels before I start taking vit d. So, as a needle phobic I am just plucking up the courage .



I take 5000 iu daily even though the blood test came back that my levels were ‘normal’ But that was the old NHS ‘normal’. I can’t say I have noticed any difference, but have no side effects and shall be carrying on taking it.


After 3 months of taking D3, I had a blood test which said my levels were only just the NHS ‘norm’. What they were before could have been fairly low - so I’ll carry on taking mine too. Teresa xx

I also take 5000 iu, I’ve taken this for about 3 years but I don’t feel any different. I had a blood test done last year and my levels were also ‘normal’. I’m carrying on taking mine because it might take longer to have any effect.

Lynne xx

Hi gang, thanks so much for responses.

I’m going to try and build the dose up and see if I can take it daily… but if I do feel bad (worse than norm) I’ll stop.

I wonder if I’m having a negative placebo effect! Hahaha it would be typical of me!

Pat x

I too am on 5000iu and like many I have not seen any difference, but since it is not doing any harm I shall carry on.
Pat are you taking anything else that might interact with the D3.

D3 is natually produced in the body when we get decent sunshine, remember sunshine anyone, so it is odd that you are reacting to it.
But as we know there are no rules for MS, it makes it up as it goes along.

All the best,

Hi Paul… really I think it’s just been coincidence… I’ve taken 2 this week and been ok… so I’m building up to one a day.

Yes re sunshine… really I go for days without going outside at all and then I never actually even go in the sun in summer as makes me feel so bad… my Vit D levels must be appalling!

Thanks for responses peeps…

Pat x

hi pat

same as others i take 500iu a day and not noticed any difference so keep taking,just take what your happy with

not asked gp for test got appointment with nurse in january think will then just to check

take care have lovely xmas


Thanks Steve… I took one yesterday and one today… so I seem to be doing ok so far. You never know, might slow down progression.

Merry xmas Steve,

Pat x

Hi Pat,

I took 50,000IU/day to see if it would do anything. After about a month though I stopped because all it was doing was giving me headaches and making my joints crack!

I now take 5000/day, but a lot of the time I just can’t be bothered.


Hi, i have just started taking vit D3 acouple of week ago. I am taking a much lower dose than you. Did you have your levels checked before starting or is that not necessary? I am new to this so be patient with me.

Hya, I have stopped altogether as made me feel very ill.

Rizzo put a post on EL saying that she had been on 5,000 iu one day and 10,000 iu the next… alternating like that for some time since she last had blood test. She hadn’t been well for a while with fatigue worst than usual and other problems… thought it was her MS. Went to GP who did blood tests inc Vit D and she was way over the highest limit. It can cause all sorts of problems.

So everyone should take care with high dose D3. Best to have your Vit D level tested first. Then go on high dose for couple of months, then get tested again.

I’ll ask to be tested next time I go to GP. But have to say, for now, I feel better without it.

Thanks for your responses,

Pat x

Hi Pat

my Neuro told me not to take more than 2000 iu a day. There is some vit D in food too.

You get your vitamin D even on a cloudy day, so no need for hot sunny weather

and sunglasses

Ursie x

Thanks Ursie… nice to see you on here! Yep I’ve stopped taking the high dose (5,000 iu) as made me feel dreadful (worse than usual ha!). Am leaving it a few weeks and going to GP to be tested.

Oily fish is particularly good I think & I eat is about 3 times a week. Those packs of salmon fillets in supermarket are good value. Come in packs of 2… oven bake them both for 15 mins & have one cold next day!

Pat x

I’m getting hungry Pat! I love those salmon fillets too. I grill mine and boil some salat pataoes and brocc and not forgetting the hollandaise sauce. Much nicer than Vitamin tablets, lol.

Hope its ok to post here its a bit quiet at glamsx

Mmmmmmm yes hollandaise sauce or garlic mayo!

Always so quiet on glams hon & I always feel much more at home on this board… got some lovely friends on here … and of course you’re welcome!

Pat x