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krisp
3 years ago

Not diagnosed yet but I take d3 5,000iug a day @emzi
There’s a study in Australia that’s ongoing for CIS and if supplementing with D3 helps to reduce the conversion rate
Not sure who’s doing it but you can find it on google


stumbler
3 years ago

There’s been a fair amount of discussion on the forum about Vitamin D3 supplements.

5,000iu seems to be the dosage of choice.


krisp
3 years ago

@emzi the study in Australia is called the PrevAnz study
I think they’re workng on 5,000iu as @stumbler suggested


krisp
3 years ago

I’ve also seen a blog by a woman who was involved in the trial who went on to develop Ms but the difficulty is she herself doesn’t know whether she was on he vitamin d tablet or placebo?


emzi
3 years ago

Very helpful. Thank you all


eikichi
3 years ago

i take 10.000 iu a day (2x 1 5000 ui capsule) to keep my values as high as possible

vitamine D that isn’t absorbed by the body desolves in your urine
so there is no danger in overdosing on it like some vitamines like vitamine A or B

there is a study by a dutch academic in maastricht (professor hupperts academisch ms centrum limburg)
that has proven around 2012 that a high dosis in vitamine D3 on a daily basis showed improvements on ms patients
i only have a dutch link of proof of the study , maybe google can translate it for you.

http://www.gezondheid.nl/nieuwsartikel.php?nieuwsartikelID=4807

4000 iu is the max recommended daily dose for a healthy person.

from my personal experience the vitamine D3 made me feel much better and vital
and i feel like it is supressing some of my symptons. been doing this for over a year now
also , i made a new mri scan within that period and it showed no new leasions
(keep in my mind that it is uncertain if its related to the vitamine D usage )
either way nothing but positive experiences with this vitamine
hope this helps


krisp
3 years ago

I’m pretty convinced the reason vitamin D3 works is because of the glandular fever link
Here’s a virologist I think, discussing this

If you take vitamin D3 capsules (approx 1000iu/daily for each 25lbs you weigh) for 3 months then test 25(OH)D and adjust your daily intake so you stay above 50ng/ml your immune function will be better able to keep on top of infections and there will be less chance of Epstein-Barr resurfacing.


katflowers
3 years ago

20000 iu a day. I found this size capsule on Amazon


emzi
3 years ago

Thanks everyone. My partner has recently been diagnosed and he’s started taking 4000iu of vitamin d. I don’t know whether it’s just a coincidence but he seems like a totally different person. No way near as tired and a lot more energy. He will admit he feels so so much better in himself. Just didn’t know whether to up the dose. Suppose the best idea would be to get his levels checked. Thanks everyone ..


anettauk
3 years ago

I was taking 5000ius per day for about 6 months, then had my vitamin level checked and it was high so I lowered my dosage to 1000iu a day. Iā€™m a bit concern about taking too much vitamin D as it can be harmful. But I do think vitamin D works. Especially when I was on the high dosage I felt more energetic and generally better.


melissa-g
3 years ago

I also take 5000iu a day. I use the drops as I’ve been told it is the best way to absorb it. I also take it at the same time as my magnesium pill which is supposed to help with that too. The last time I had my vit d levels checked they were low despite taking it every day so I was told to start taking 10000iu for a while, and now am hoping the way I’m taking it is helping my body absorb it better!


krisp
3 years ago

Hi @melissa.g have you noticed any difference with the drops? I know that the PrevAnz study I was talking about earlier is trialling using 10,000iu too, I think your only at risk of toxicity at 50,000iu a day but don’t quote me on that


melissa-g
3 years ago

Hi @krisp
Honestly.. I don’t notice much of a difference taking vitamin d at all, but I do it because I know it’s supposed to be helpful! I haven’t had my blood rechecked in some time so it’s possible im still a bit low. I’m not so sure


gormenghast1957
3 years ago

Are you, people taking Vit D, doing so as a result of advice from your consultants or from trawling medical research posts on the good old interweb? Since being diagnosed my medication comprises Lyrica and Codeine Phosphate. My only other medication for MS is THC. This isn’t available on the NHS and the various trials with the ‘modified’ drug don’t fill me with much confidence.

After my diagnosis (I was being bounced around various specialists when I turned my car over. Being discharged after 4 days with head injuries and various broken bones, collapsing in the street and being rushed back to hospital, concentrates minds. Head injuries and collapse in a public space makes hospitals fear that the cheque book will be appearing and no expense will be spared finding out the cause of pre-crash issues), on my first out-patient meeting with my consultant, he asked if I smoked. Shamefully I admitted to enjoying a fag with a pint but this wasn’t the answer to his question. When I admitted to enjoying smoking more than the odd spliff, he advised me to keep it up and regretting the pure stuff wasn’t available on the NHS. He warned me that if I was busted for a quantity that would be deemed as dealer quantity he wouldn’t support me otherwise he was happy to write or even appear in court to let the judiciary know cannabis works.

I get no advice about Vit B or anything else. I have mentioned certain drugs that I hear mentioned on MS support sites but nothing has been forthcoming. It appears that Lyrica is at the pinnacle of MS drugs for the health trust I find myself in.

I shall try my GP after swatting up on VitB.


stumbler
3 years ago

@gormenghast1957 , vitamin D3 is the subject of this thread. Although, another cause of fatigue that should be considered is our levels of B12.

Just wanted to clarify for you. šŸ˜‰


fi70
3 years ago

I would advocate discussing taking supplements with your consultant, about 4 years ago after reading Overcoming MS I starting taking all the recommended supplements including 10,000 iu of vit D3 and had blood test prior to starting copaxone. My liver enzymes were all over the place and I was refered to a liver specialist as an emergency case, he reckoned my results were due to all the supplements and advised I stop them, after stopping the supplements my liver returned to normal. So although evidence suggests vit D3 is beneficial is it something you should do under medical supervison


krisp
3 years ago

You might have a point
I’ve started talking a lot of vitamins etc and have suddenly developed a rash on arms wrists etc, nothing major just a prickly rash, however eliminating what has caused it is nigh on impossible as I’m taking vitamin d3, b12, biotin, omega 3, magnesium and Claritin

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