If you haven't already done so please, please ask... - LUPUS UK

LUPUS UK

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If you haven't already done so please, please ask your doctor to check your vitamin D levels.

Ani- profile image

Hi everyone,

Just thought I would write a quick update. Thank you to everyone who emailed me and asked for a copy of my 'lupus, diet and lifestyle' research paper. Over 50 of you got in touch.

Just wanted to update you on a recently released research paper, which again highlights the importance of getting your vitamin D levels checked. This paper was even more interesting since it was a randomised placebo controlled trial - the paper is long and scientific but basically the outcome found that giving vitamin D supplements to increase levels of serum vitamin D actually lowered inflammatory markers in the body and there was a a tendency toward clinical improvement.

From a personal point of view, I got my vitamin D levels up to 100 nmol/L with supplements and 6 monthly blood tests and it has helped my pain a lot. It isn't a cure but it is a definite help. I did have to ask for the blood test but my doctor was fine about doing it after I had asked. It should be routine for all individuals with any auto-immune condition!

If you want to see the scientific paper for this latest study then click here: ncbi.nlm.nih.gov/pubmed/232...

If you think your doctor won't do a test then print the study and hand it to them. Please do ask to have your vitamin D levels checked. Experts agree that optimally levels should be 75-150 nmol/L (which is 30-60 ng/ml)

Currently I am working on putting all my research into some kind of easy to read leaflet/document and will let you know when this happens.

All the best

Ani xx

If you would like to get in touch with me then you can do so via my website nurturewithlove.com

10 Replies

What great advice ,and very thoughfull,mine was 70 in auastralia ,but that was a year ago ,weve since relocated back to the channel isles ,and im not getting much as im to unwell to spend much time outside :(

My rheumy check my levels each time I have bloods taken first level was 28! Second level was 52 following a course of adcal plus getting some summer sun. Normal levels are above 50 so she's given me a further course for this winter and has advised my GP to give me a course each week for the winter months as she is in agreement that good levels of vit d improves our immunity. I feel much better since taking these and would advise you to get your levels checked

i might be being stupid here again but i thought the sun was bad for lupus/autoimmune

the sun is (bad for you) but you need sunlight to manufacture vitamin D - that's why, when we are avoiding sunlight, we need to take vitamin D supplements - it works!

Noo that's not stupid at all, sun exposure is on the top of the list for causing flare ups..But like Heatheric said it's good to get Vitamin D supplements! Plus being out in the sun for 10mins with sunscreen on and the appropriate clothing(I mean so you won't be too exposed in the sun) will be okay, like sitting out in the garden (when it is not cloudy🤭)

Unsure if still available but I also would like a copy of your report. Is there a way to privately message you with my email address?

Ani- profile image
Ani- in reply to ShannonB

Hi, of course you may have a copy, please just contact me via my website nurturewithlove.com/contact/ I am the only one who sees emails through the site, it is totally secure, my email address is also listed there. Kindest regards, Ani

hi, i did mention my vit d levels to my lupus spech and she said to take over counter suppliments and NHS dont waste money checking vit d levels anymore? was given CALCEOS (calcium and vit d3 suppliment) but they made me very nauseas so didnt take again.

Hi - this is David from the US, would really like a copy. I have 50,k of vitemen D, have been for quite sometime, doesn't seam to make a difference , although the aches n pains probably would be worse without it. The SLE comes with many blood lots , no vitemen k in my diet all. No green veggies. Just wondering, along with lupus what others come along with it for you ?

There sounds like a lot if work that was involved in your diet n lifestyle , thank you for your passion in helping other LUPIES !

Ani- profile image
Ani- in reply to Davidj

Hi David, Please email me via my website (nurturewithlove.com/contact/) and I will send you a copy of the research review paper that I compiled. It took me 8 months to read all the research papers and then write the document, but you are right - I am passionate about nutrition and about sharing the information that I have found about lupus. I am excited to continue with this project this year when I can find the time/energy! Best regards, Ani

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