Vit D

[Suzan62]

Hi there, I’m down to 4.5 mg of pred now and just wondered, as it’s summer, if I still need to take the vit D and calcium tablets twice a day or if I’m ok just taking one a day? My dexa scan was fine.

[Celtic PMRGCAuk volunteer]

Suzan, it might answer your question to hear my experience. I wasn’t prescribed calcium or Vit D whilst on steroids and my bones remained intact. Have you had a Vit D blood test? If not, do request one, as when tested I was found to be deficient with a reading of just 38 (normal range 75 to 150/200 depending on your area health authority). A 3-month course of Cholecalciferol D3 returned my levels to normal. Taking Vit D also allows more calcium from diet to be absorbed into our body.

[PMRpro Ambassador]

As Celtic says - depends a bit on your vit D level and whether being in the sun leads to you making vit D. I live in northern Italy at a latitude where theoretically we can make vit D all year round. Nevertheless, about 80% of the population is vit D deficient! I don't sunbathe as such but am outside in the sun with bare arms and legs for long enough each day to make vit D - according to the theory. I was deficient and took high dose vit D to sort it out - successfully. The 2 tablets a day was enough to maintain the level but last summer I had had cystitis problems, probably due to the calcium, so changed brand. Since then I wasn't as diligent with taking 2 tablets a day, often forgetting - and my vit D in the early spring was low. More high dose supplement...

[Suzan62 in reply to PMRpro]

I don’t sit in the sun either I just thought one tablet might be enough as I’m on a low dose steroid now and eat healthily. Some days I take 2 and others just 1 as I’m afraid of taking too much. Guess I’ll carry on as I am and get my Vit D checked next time I visit doc.

[PMRpro Ambassador in reply to Suzan62]

Nothing to stop you getting a tub of vit D tablets and taking one calcium/vit D and one just vit D. You don't get much vit D in your diet however healthy it is unless you eat about 1/2 lb salmon every day! Or 17 eggs. No vit D in anything much - none in any veggies except mushrooms for some reason. There is a paper that claims even 5mg pred still has an effect - I'm not entirely convinced, I think it depends on the person and isn't a given. Like Celtic, my bone density hasn't changed in over 7 years on pred but I have taken calcium and vit D.

[Suzan62 in reply to PMRpro]

That’s a good idea, I think I might do that, take 1 vid D and 1 calcium/Vit D a day. Good idea thank you.

[Suzan62 in reply to PMRpro]

What dose Vit D would u recommend?

[Celtic PMRGCAuk volunteer in reply to Suzan62]

I feel 800 units per day would be sufficient together with your one calcium plus Vit D pill, but I would get the blood test done first just to have the present base level.

[PMRpro Ambassador in reply to Suzan62]

I'd go up on Celtic's suggestion but I'm a rabid vit D supporter! The local osteoporosis guru here says 2,000 IU in winter. But does depend what your level is at now. If it is good you obviously need a bit less than if it is in its boots!

[Hindags in reply to PMRpro]

I'm curious. What kind of calcium supplement cause cystitis problems for you? What was better for you?

[PMRpro Ambassador in reply to Hindags]

Others on the forum have had similar problems. The usual calcium supplement is calcium carbonate - which has a bit of a habit it seems of causing grit in the bladder (finer versions of kidney stones I suppose), Originally I was on the most common one here in northern Italy - Natecal. Now I use Ideos - and they do seem better. The Natecal was OK as long as I drank loads!

[AkselOlsen in reply to PMRpro]

Cystitis problems and calcium - could you please explain?

[PMRpro Ambassador in reply to AkselOlsen]

Several people have noticed that they have cystitis symptoms - but no UTI when the urine is cultured. One cause can be the calcium supplements - excess calcium is excreted via the kidneys. Some people can develop kidney stones but others form grit, not large enough to block the ureter (tube between the kidney and the bladder) but enough to act like sandpaper on the walls of the bladder and the urethra (tube between the bladder and outside) and lead to inflammation and pain. And the grit is worse/only occurs when the urine is very concentrated.

[AkselOlsen in reply to PMRpro]

Thankyou! I will stop calcium for a coupel of weeks to see what happends🙂

[HeronNS]

You're more likely to get too much calcium from a supplement than too much D. Normally your body will only activate the amount of Vitamin D it needs. On the other hand, large calcium supplements are difficult for the body to absorb. This is why we are recommending that people also take Vitamin K2, which will guide calcium into the bones. Different kinds of calcium may work better for some. The dose shouldn't be more than 500 mg, maximum in a dose. Better two doses of 400 or 500 mg twice a day, than a single dose of 800-1000.

[Suzan62 in reply to HeronNS]

What I’ve been taking since starting the steroids last June is Accrete D3 twice a day and each tablet contains Colecalciferol Vit D 400 IU (10 micrograms), calcium 600 mg (as calcium carbonate 1500 mg) that’s what it says on box. Is this too much calcium to be taking in one day?

[HeronNS in reply to Suzan62]

I think taken in a single dose it is a bit large. But not as a total for the day. However:

health.harvard.edu/staying-...

As people taking pred we probably all need some extra calcium, but apparently taking a lot more is not useful.

[PMRpro Ambassador in reply to Suzan62]

That is the standard supplement dose. As long as you take the tablets at 2 different times you will absorb all you need - and the excess will be sent on its way in the urine. It isn't too much no - but if you took both tablets together you wouldn't absorb as much as taking them a few hours apart.