What role does vitamin D have and how much is too much? - NRAS

NRAS
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What role does vitamin D have and how much is too much?

lovemydoggy
lovemydoggy

I keep reading posts here to get vitamin D levels checked. I was moderately deficient in July, given a prescription of 50000 IU once a week for three months, which sounded huge to me. Apparently, that's normal protocol if you're low. After 3 months my level got to 31 and I was told to take 5000 IU daily. I woke up today and thought maybe joint pain and excess Vitamin D were related. I found they are, which could account for some of the worse pain. Also, I found bone pain was related to excess Vitamin D. I have that too sometimes. Since July, at the advice of my GP I have radically changed my diet. I've lost about 16 pounds. I drinks lots of almond milk, eat vegetables as one should and have a very good diet now. I was thinking that the daily 5000 IU might be too much now. Apparently the RDA is well under 1000, and that counts food and supplements. I don't have a definitive diagnosis yet, but RA seems quite probable. I have all the symptoms. I'm wondering what your experiences are and what you know about Vitamin D.

22 Replies
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Just checked my prescription - I was a bit low and my GP prescribed 20 IU daily for 3 months, which is 400% of the daily recommended requirement. So now I'm not sure if mine is low or yours is high!!

lovemydoggy
lovemydoggy
in reply to spacey1

Wow. 20 IU versus 5000. I think mine must be high. Especially if the RDA is only 400. It increases as we get older, but still stays under 1000 IU. I'm taking 5000 daily.

Do check whether you are being prescribed D2 or D3, as there's a difference in potency. And the measurement unit for vit D can really trip you up - well it has me as teeny writing make it easy to mistake IU for Ug.

The base line for RDA is 4OO but 1000 is acceptable for us according to many sources. I am prescribed more as I can't retain it, so have 100,000 every two weeks at the moment. I can feel it if I drop too low as I start feeling rubbish.

D3. The measurements are really wild. I had a prescription for 50,000 once a week for 3 months. Being normal now 5,000 a day seems like a lot.

Simba is good on Vit D, so perhaps he'll pop in with views.

Before I even started taking the Mexotrexate, the doctor told me to get a good Calcium supplement and Vitamin D. You need D for the body to utilize the Calcium you need. Mexo. is tough on bones.

lovemydoggy
lovemydoggy
in reply to Nanna71

I'm not on anything yet, but was somewhat low so that's why I'm taking it even though my level is normal now. Can I ask how much you're taking?

Nanna71
Nanna71
in reply to lovemydoggy

1200 units per day of D plus dairy and other food sources. But never all at once. It looks like others are taking much more. I wonder if I should up my intake?

lovemydoggy
lovemydoggy
in reply to Nanna71

I don't know. Good question, but apparently people with RA tend to be deficient. I get a lot in my diet, then have a multivitamin and the 5000 on top of that. After my prescription for 3 months of 50,000 a week my value went from 15 to 31, which is on the lower end of normal. Thinking maybe the higher end of normal me be better.

I take 5000 iu daily. Nutritionists recommend 4 times that amount. I think it’s difficult to take too much and quite rare that it’s a negative reaction

lovemydoggy
lovemydoggy
in reply to Cwendyn

Wow! Nutritionists recommend a whopping amout. I'm taking 5000 as well.Sounding more and more like that's probably in the right range.

I had bone density scan and was put on vitamin D tablets. Was on them few years then was told you really need to have break from as they stop working

Hi

Ironically I responded to a Vit D question yesterday.

I had to take 3000IUS of Vit D3 a day when I was initially diagnosed, as my count was rather low. I asked the Prof Rheumatologist at the time a number of questions, here are his answers to my queries:

1 - there is a tendency for those with RA to be low in Vit D

2 - count should be a minimum of 50

3 - ideally those with RA should keep there count between 75 - 100

4 - if you are on a 'high' dose then don't take your day's dose all in one go, space out over the day to maximize uptake

5 - and this one is from me - avoid caffeinated beverages around the time you take your vits as caffeine reduces the uptake in the gut

In my case I had blood tests every couple of months to make sure I hit the right levels and was not exceeding dosage.

I would find it impossible to get enough Vit D through my diet + from sunshine. This would involve me eating oily fish everyday and lying in the sun till I burnt.

You are right when you say the recommended dose is much lower but as for me I am no longer 'joe bloggs' but I am 'joe RA bloggs'. Which means I must supplement.

Joy

lovemydoggy
lovemydoggy
in reply to Joy_1

Thanks, that's great information. I think I probably do need that much.

Hi,

I honestly cannot agree with that. Though possible that with excessively high dosages of Vitamin D, you had such reaction.

I have suffered from joint pains, excruciating pains and what got me through and provided relief were some natural herbal extracts including vitamin D.

gdhlth
gdhlth
in reply to power2u

I second this

It would be a good idea to have your vit.D level checked.

When last checked I was normal. I had been deficient. Took a prescription for 3 months and that fixed it. My GP told me to take the 5000IU a day, which I thought might be too much. Though she might be trying to get me into a high range of normal. Or maybe I need that much. Consensus here seems to be that 5000 isn't excessive.

Optimal level should be between 50-100. 30 is often seen as normal. So your 31 was just normal. The daily dose of 5000 was adequate for trying to increase the level. I doubt your pains had anything to do with the vitamine dose. Simba

I dout it too. I'm back on the 5000. She had a reason to prescribe it. I'm no longer deficient, but guessing she probably like to see me in a higher normal range. Prior to the 50,000 iu week for 3 months my level was 15. She did say most people have a deficiency and do not know it.

Actually new research on vit.D and RA are hypothysing there is a cortisol resistence in RA which shows up as high cortisol levels that still do not stop the inflammation ( which it normally does). In studies with mice it has been shown that vit. D actually decreases this resistence giving the cortisol a chance to decrease inflammation. Low vit.D levels in RA are well documented, so there may really be a connextion here. Anyways more vitD should decrease your pain not increase it. Simba

I feel good when my D level tests around 50. I take 5000 IU daily. I get my blood D level checked annually.

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