Overcoming Multiple Sclerosis

Hello all
First of all, I should say thank you to the wonderful community and the support you all offer. It's been an incredibly overwhelming experience since Dx over a year ago, but having these resources has been a blessing.

So DH, was diagnosed about 1.5 years ago with RRMS - He has been on 50000 IU of vitamin D3 dose 1x a week since then. He started at a very low level during diagnosis, but was able to get to 40 ng/mL over the course of about 4 - 6 months.
However, in his most recent labs, his levels are still at 40 ng/ml - he is been continuing with the dose every week however we have not seen rise in his levels - not sure what to do and what might help.
He tries to take vitamin D after heavy meals with fat like salmon or nuts / avacado. Doc also recommended taking 5000 IU daily for about 2 weeks. He is 40 and he is brown skinned (indian).

He is now on ocrevus since march 2020. He is fairly doign well but we don't want to rely on medication for the long road.
Any recommendations on how we could improve his levels to the optimal levels like OMS recommends would be awesome and we will be grateful.

Thanks in advance
S

Hi Awesomewarrior,

It appears that he has found the dose that will keep his levels at 40ng/ml, if you want to rais his levels you will probably have to raise the ammount he is taking daily/weekly.

It can take some time to find the correct level but you are going in the right direction, I have put a link below to a post that shows my journey with Vitamin D

viewtopic.php?f=7&t=7632&p=47079#p47079

Reminds me, I should probably get a test to check my levels

I hope this is helpful

Brian

Hi Awesome Warrior,

Not meaning to sound rude or be personal here, but is he overweight?

If someone is overweight, where Vit-D is a fat soluble vitamin, the nutrient is diluted through the bodies tissue even if there is a large intake, and can subsequently have a lower release as fat is burned into the bloodstream, or at least that is how I understand it.

Hello,

Thanks for your responses. I appreciate it a lot. That is not a problem at all..

To answer your question no he is not overweight, he is about 175 lbs at 6 feet.

Bannirique, Also, for vitaminD levels, his doctor is not prescribing over 50000iU once a week, she has had him there for over a year now. My follow up question, is 50000 IU not sufficient to raise his levels high enough?
do you think, his body is not absorbing what it is suppose to?

We can try and get his doc to give a prescription for higher dosage, if that is the case.

Thanks again.

Just to make you aware that I am not a Doctor or health professional in any way, most of what I know of Vitamin D and OMS I have picked up from this forum or google, professor Jelineks book, “Overcoming Multiple Sclerosis” is also a good source of information and I recommend that you read that if you have not yet done so.

Vitamin D is dose dependant, so if you take 25iU a week, your blood levels are unlikely to go up by very much, even if you take 25iU for the rest of your life. If you take 200,000iU a week, your levels will likely rise quite high, but if you carry on taking that amount your levels will eventually stabilise, although at a much higher level.

What you need to do is find the dose that keeps your husband at the level that you require, at the moment it seems that 50,000iU is the correct dose to get his levels to 40ng/ml, that dose is different for everyone and can vary quite a bit, I need around 11,500iU a day, this keeps my levels around 80ng/ml, other people only seem to need 3000 -4000iU a day.

Most people on here sort their levels out themselves as not many Doctors/Neurologists are supportive when it comes to Vit D, my Neurologist told me when I was diagnosed 8 years ago that there was not enough evidence to recommend taking Vit D although I think things are changing. Maybe things are different wherever you are in the world!

I buy mine on the internet and get tested twice a year which I pay for myself, I may have mentioned it to my Dr in the past but he is not involved with my Vit D levels.

Hope this helps

BG

Consult your doctor and check info .
As for me, the lowest mine has been was 30, and that was during the winter with no sun and before I started eating as well as I do now. It hasn't dropped below 40 in the years since. I eat a modest amount of D foods and certainly not daily. I am not saying this would work for everyone, but I'm not an outlier either.

SammyS,

levels of 30 and 40 are are a little vague, 40nmol/L is very low as OMS recomends a level of 150 - 225 nmol/L.

However, if if your reading is 40ng/mL, then it is not so bad but still below the OMS recommended level of 60/90ng/mL

https://overcomingms.org/recovery-progr ... -vitamin-d

Hope this helps

BG

I have been vitamin D and iron deficient for the last 4 years of my life now. My iron dipped first, then the vitamin D. They have me taking both supplements because they said the vitamin D would help my blood absorb the iron better.

I don't know if I'm repeating what the doctor said correctly, but my actual blood cells are no longer a normal size, and are consider abnormally small due to being deficient for so long.

Now that I know this, I'll make sure to take my supplements with food, hopefully I'll actually see a change at my next annual.