Vitamin D

[Robinsnest72]

Just curious what dose of Vitamin D has been prescribed for most. I was reading where if you do not have enough you can have aches and pains. My Reumy has me on 2000 iu.

[Hidden]

Hi

A Combined Tablet Twice a Day

Calcichew-D3

Calcium 500mg

D3 400IU

[Robinsnest72 in reply to Hidden]

Thanks Mrs. Nails. My doctor is not a firm believer of calcium supplements as she says you can get it from your food and it can constipate and upset your stomach. She also claims that Vit. D increases the calcium in your system. She claims where we live you could lay on a rock naked and still never get enough vitamin D.

[Hidden in reply to Robinsnest72]

Well there’s a thought!.....

I had my VitD tested about four years ago & it was low so l just had a months course of extra VitD on top of my usual Calcichew.

[Koalajane]

Accrete D3 400iu and 1.5g calcium twice a day

[Highlandtiger]

I’m on Adcal-D3.

Calcium carbonate (1500 mg) and vitamin D3 (400 I.U.)

Two tablets a day.

[SnazzyD]

Prior to diagnosis with GCA I felt tired and achey and had a hunch my Vit D was low and it was. It depends on your level of Vit D when your blood is tested- Mine was 10mmol/l and had 3 months on 3x800iu capsules per day and I felt so much better. I take calcium 200mg with vitK (bought by me) because I found that a full dose of Calcichew have me cystitis and I wanted the VitK. Now I’m on low dose Pred I take 800iu and 20mg calcium every few days because they started to disagree with me. My VitD level is now 60. I’m leaning towards your doc’s view on calcium but I do think just drinking lots of milk isn’t the answer because I’m not sure how much calcium is really absorbed if one has an intolerance. So I try hard to eat lots of calcium contains foods.

[Noosat in reply to SnazzyD]

Try drinking almond drink (milk) I haven't drunk milk.or used in cooking for man, many years. The almond drink has lots of calcium in it.

[prospecter7]

Do you find the extra Vitamin D helps? I take 1000 Units daily. I have been in remission from PMR for a year and a half now after 4.5 years on Prednisone. I seem to have much increased OA which makes for aches and pains and I am thinking of asking to have Vit. D checked. BTW, I am a Canadian too, by the Atlantic...

[PMRCanada]

Hello Robinsnest72.

I take 1400 iu of Vitamin D per day (along with calcium supplement and biotin).

I'm not sure what my baseline Vitamin D level was, but I did get it checked last month (July) as part of my check up with my GP, and the results were:

25-Hydroxyvitamin D

(name of test)

95

(my level)

75 - 250

nmol/L (reference - range of Vitamin D level considered ok)

I was surprised at this as I have been taking vitamin D supplements since my diagnosis of PMR (May/18). I also am a sun lover and spend at least 20-30 minutes per day in the summer time, sometimes longer if I'm in the pool). I can't imagine what my level would be if I didn't take the supplements and enjoy the sun. Makes me think I will double up my vitamin D supplements in the winter months this year.

Hope this helps.

[alvertta in reply to PMRCanada]

My rheumatologist says minimum 2000 per day while on prednisone.

[jinasc]

I had low Vit D and it was so low that I was prescribed 20,000 units, twice a day for 10 days. Another blood test and then 20,000 units per day for another 10 days. The BT and up to speed. Since then I take as a maintenance dose (1000 units) 25ug on the packet per day.

[HeronNS]

I had been taking 2000 daily prior to PMR. Dr said to double it, but subsequent tests showed it going too high, so I went back to 2000. I have otherwise nonsymptomatic sarcoidosis.

[alvertta]

2000 for me too.

[SheffieldJane]

I am on 800iu but was on a high dose like yours initially because I was deficient.

[Poppy06]

I’m on 2000

[sondya]

I was given Fosamax

[Hidden in reply to sondya]

Fosamax isn’t Vitamin D it’s Alendronic Acid.

[PMRpro Ambassador in reply to Hidden]

I believe there is a new version of Fosamax plus vit D - it means they can keep it on patent and charge more and tell people it is fantastic ...

[Hidden in reply to PMRpro]

Typical! 😉

[PMRpro Ambassador in reply to Hidden]

Money money money ...

[sondya in reply to Hidden]

Alendronic acid, sold under the brand name Fosamax among others, is a bisphosphonate medication used to treat osteoporosis and Paget's disease of bone.

[Spanky2019]

Blood work showed vitamin d deficiency when gca and osteoporosis diagnosed. I was prescribed 50,000 units once per week vit d3 for 12 weeks. I have one week left of that, then I go to 1000 unit/ day vit d3.

[PMRpro Ambassador]

It all depends on your starting level and you. I need more than the amount in the standard calcium/vit D supplements to improve my level. No supplement at all and my blood level falls steadily as I obviously don't make any via the skin and sunshine route. Some people do, lots don't especially as they age. At 70 years you are lucky if you make a quarter of what you made at 20 - and some people are depleted then.

[SusanEleven in reply to PMRpro]

The sun and sunshine route works very poorly for me as well. 20+ years of daily Vit D supplements. Severe deficiency noted in my 40s and probably there for much longer.

[SusanEleven]

I feel like I got started in the dark ages of Vit D treatment. It takes 4000 IU per day year round to keep me in the normal range. That’s on top of my calcium-rich diet. My endocrinologist repeats my blood test yearly. In the early years she retested 2x a year.

I asked for my first Vit D test many years ago (about 20 years ago) based on things I’d read, hoping to feel better, and the fact that bone drugs were being pushed at me for osteopenia. Test results came back in the “severe deficiency” range. Prescriptions of 50,000 IU for months barely nudged me up.In those days the RX was written for D2 not D3. I did my own information search and found a good study saying D2 was not as effective as D3, gave it to my endo and she switched me to D3.

We even did a little test in the early days of my Vit D journey. Daily summer sun exposure caused no increase to my Vit D level.

Most docs I know suggest 1000 IU per day without testing but the blood test is the only sure way to know your level.

[walker5]

3000 IU a day to finally get into range.

[Weegie51]

Accrete D3 - Vit D plus calcium carbonate x pills daily (equivalent to 1200mg calcium and 800 IU vitamin D. I also take a vitamin K2 supplement to put the calcium where it's needed (bones) and not forming arterial plaque! Always best to get your calcium intake naturally from food sources though. I get blood calcium checked at routine checkups to make sure I am not at risk from plaque forming levels.

[Pippah45]

I supplement with a D3 spray with K2 in it. Was diagnosed deficient some time ago with underactive thyroid. Many hypos are D3 deficient including my daughter who is a gardener and gets lots of sun in Devon, when it isn't raining! I think D3 is very important.

[Purplecrow]

North of the equator...low Vit D... take 4,000 daily. Added to my cold water fish oil and B complex, I am a well lubed old woman who can see the difference when I forget my vitamins and minerals. The fish oil caps are helpful for osteo arthritis pain and inflam. Just sayin... 💃🏼

[cranberryt]

My rheumy said 1000iu D but more wouldn’t hurt if I couldn’t find that dosage. She said no calcium for me until after menopause as long as long as I get a multivitamin and at least two dairy servings.

[peterfromlondon]

hi ! I'm on 2000iu a day but reading result says my level is now 125_is this high ! ? think so maybe i at go too 1000 iu a day ? waiting advice from doctors who have reading but haven't opened it after 4" days !

[PMRpro Ambassador in reply to peterfromlondon]

What units is that in? It is certainly adequate.

[peterfromlondon in reply to PMRpro]

not sure just says 125

[tattookitten in reply to peterfromlondon]

When I has my test results from a recent blood test I was told that Doctors were normally happy with levels of 50 or above, but 125 sounds quite high to me! Maybe drop to 1000IU and see how you feel?

[tattookitten]

I had a blood test and my Vit D level was super low, so I've been prescribed 6 mega doses of 50k IU, after the 6 weeks I've been recommended to take 1000 IU every day

[peterfromlondon in reply to tattookitten]

doctors after nearly 2 weeks have not seen or replied too me re my vit d level , ive cut back one tablet each night now feel tired all the time ! docs should read blood test results !

[captainbarnacles]

There is some relatively new research that might strongly suggest that it is better to get vitamin D from a natural source like cod liver oil, or seafoods etc, that also contain vitamin A in a natural ratio. Apparently the body can't use vitamin D optimally without natural vitamin A present. The body regulates how much vitamin D is used by the body (and how much goes to waste), by referring to the levels of (a cis isomer of) vitamin A which can adjust the rate of your vitamin D conversion machinery/enzymes etc.

You really want to have the right amount, not too little or too much. So this way you get the vitamin D you need converted by your body (to Calcitriol), but also this could allow for a natural safety mechanism that could slow down the process, reducing the risk of vitamin D related toxicity. If you take vitamin D from un-natural sources, you may not have this mechanism available to your body. I understand many here are already in a somewhat delicate state, so thought this might be helpful information.

You should obviously check with your doc or diet person before changing anything, and not blindly rely on social media sources of information.

A helpful reference on this, scroll halfway down to vitamin D safety - he is a cod liver oil fan BTW, so could be biased:

chriskresser.com/separating...

[PMRpro Ambassador in reply to captainbarnacles]

The problem is that cod liver oil contains a lot of vit A and depending on that alone for vit D would mean taking about 1.5 tablespoonfuls per day - which would increase the risk of vit A overdose. Both are fat-soluble vitamins and once taken are difficult to get rid of.

[captainbarnacles]

I agree 1.5 tbsp is a lot of cod liver oil, and sounds excessive indeed. I also think it is obviously very risky to experiment if what you are doing is working well too. I've been trying half a teaspoon, but that is 500 iu, and 20 mcg Vit A from the one I have. I'm fortunate to live in a generally sunny climate, even in winter. I can have a moderate allergic reaction/intolerance to both Sulfites and Gelatine which are present in many of the tablets/capsules for Vit D, so do tend to look for natural sources more than others probably would.

[PMRpro Ambassador in reply to captainbarnacles]

I also live at a latitude where theoretically vit D can be produced from sun all year round. That doesn't mean it is. And whether it is sunny or not is immaterial - it is the angle at which the sun strikes the skin that counts - north of about Turin or New York there will be a period when the sun is so low even at midday that that will not happen.