Vitamin D Deficiency

[heather1983]

I have a follow up appointment with prof Bruce at MRI on Wednesday, when I should get results of numerous tests, and hopefully a diagnosis (Lupus, Hughes, scleroderma, bechet's, have all been mentioned). In the meantime my GP called me in for some results of tests he ran last month. Turns out there is blood in Urine- been referred to urologist, and Vitamin D is at 16! GP has put me on Faltium- D3 800u caps 1xday. I will ask prof Bruce about this on Wednesday, however I was wondering if anyone had any insight into vit D deficiency and Faltium, I didn't think 1xday seemed like a very high dose???

[Bronagh2015]

Hi I'm on that dose and I know many others are too! I really felt the benefit of it after a few weeks, the fatigue improved and the awful brain fog. 😀

[heather1983 in reply to Bronagh2015]

Thanks for the reply, do you take it all the time now?

[Bronagh2015 in reply to heather1983]

Yes I will be on long term as I'm very sun sensitive so cannot get vit D naturally.

[heather1983 in reply to Bronagh2015]

I asked the doctor if vitamin d was low due to my intolerance of the sun and he said no- I thought that was wrong. I think it's a good job I'm seeing rhuematology tomorrow, they should have some better info for me and will be used to dealing with people that are photosensitive.

[Cann in reply to heather1983]

I agree, I think that is wrong, too. We get vitamin D even on cloudy days so I do my best to go out for at least half an hour a day when I feel up to it.

[loopy-lou]

Hi, I am also on Fultium D3 800-u as my last vitamin D was 17. However, I have been told to take 4 daily which is quite different to you. I am going to ask about this at my next appointment. Please let us know what you are told on Wednesday. Hope you get a diagnosis-Good Luck.

[heather1983 in reply to loopy-lou]

Yeah, I thought I probably should be taking a higher dose, even if just for a while till my levels increased. Do you know how long your going to be taking it for? Is this something that's needed forever once your on it?

I will post on Wednesday with an update from rhuematology x

[loopy-lou in reply to heather1983]

I have been told that the levels will be checked on a regular basis (I have monthly blood tests as a routine as I take methotrexate). I don't know what will happen long term. I assume the dose is adjusted or stopped. Post your update on Wednesday - good luck x

[digger1]

i am also on vitamin D fultium D 300 4 x daily my gp insists this is just precautionary???? even though the fatigue has got no better in the last 4 months asked for my score, ignored. i have RD fibro and cfs

hope it helps you as the fatigue is horrible xx

[digger1]

sorry meant 800 tiredness taken over

[Maureenpearl]

I am on Colecalciferol 800iu (200mcg) which I will be on long term as my level was only 10 when I ask for my blood to be tested as I am sun sensitive and a blood test is the only way to tell what your Vitamin d level is.

[addai]

Hi all, could someone tellme the difference between adcal-D3 and faltium D3? Is faltium without calcium?

[heather1983 in reply to addai]

I'm not sure, I will ask rhuemey tomorrow for you x

[loopy-lou in reply to addai]

I was originally on Adcal-D3 but my levels didn't go up enough so I was changed to Faltium D3 - I think it is stronger. I am extremely sun sensitive so never go in the sun.

[Footygirl]

Hi Heather

We have had a few streams on this.

I think a survey of all of us Lupus/CTD would clear some things up. So many of us have found vit D deficient. I asked last week for more as positive effects worn off. After booster for a week and one a month not enough for me. Seems I am correct, need a longer stronger course.m

Is there a link with us especially?

Sorry Faltium not ring a bell.

Someone on here will know it. Hang on

HugsOOO

[addai]

Thanks for that Loopy-lou, I am very deficient but have been left on adcal-D3 for about two years or more now. I am ok in sun when I go abroad or here but do need to wear sunglasses. My bones hurt, my knees hurt and click with every movement, but i now think I need to talk to rheumy about Faltium and if this could make a difference for me.

[heather1983]

Update***

The rhuematolgist told me he didn't think Vit D deficiency played apart in autoimmune conditions or had any symptoms, just that it can cause weakened bones and rickets. he said most people in north of England have a vit D deficiency.

all my bloods came back negative for everything (he hadnt tested vit D) so i'm back in limbo again. I'm going to take the Faltium though, as it may make a difference, even if rhuemy dosnt agree.

[addai]

Does anyone else take alendronic acid 70mg once weekly and adcal-d3, 2 daily, ona regular basis?