SLE and Vitamin D.... Help

[Kismetsoul]

Quick question has anybody had a problem with vitamin D levels and their SLE? My vitamin D levels are very low I thought maybe going out for 15 to 20 minutes a day and getting some sun would work, but being in the sun flares up my lupus any suggestions?

[happytulip]

Mine was undetectable on blood tests! Initially I took Holland and Barratt supplements but now I get it from the GP in the form of Adcal D3 (calcium and vit D). I can't go in the sun as it causes so much pain. Totally photosensitive. Good luck x

[Kismetsoul in reply to happytulip]

Thank you

[Annethlowen]

Dear Kismetsoul I also have flare-ups from the sun so I take cod liver oil with vitamin D tablets and stay in the shade as much as possible.

[Kismetsoul in reply to Annethlowen]

Does the cod liver oil give you a fishy taste in your mouth?

[happytulip in reply to Kismetsoul]

Fish body oil is better for you than cod liver oil as cod liver oil can cause a build up of toxins in your own liver. Salmon oil is the best but anything with with omegas 3 and 6 are good. Cod liver oil was considered the best thing for years but I believe it contains a lot of vitamin A that the liver can struggle to break down. Go for fish body oil.

I occasionally get a fishy test after a little burp but nothing too bad. Otherwise they are tasteless.

[SH55]

Even though I walk my dogs most days for more than 20 minutes I still have low Vit D. So I take Vit D supplements. I have taken the adcal but don't particularly like the chalky taste. People living in Northern Europe often have lower Vit D levels not just SLE people. I eat a healthy diet (and chocolate!) but it seems it isn't enough. I can manage some sun which feels good but don't overdo it. The only way forward is to take the Vit D supplements. Don't know if having SLE prevents proper absorption of D?

[Kismetsoul in reply to SH55]

I also have GI problems with my lupus and Sjogren's , I also think there is a problem with adsorption of nutrition pills even fluids with my digestive system. Thank you

[Sara_A]

I’ve been previously told by a rheumatologist that there is a link with rheum and vitamin d deficiency.

Ive has vit d supplements over the counter and on prescription.

Did the dr suggest anything? As it depends on how low they are as to what treatment u need. If very low sometimes u need injections or as I said supplements.

It’s lack of sunlight which almost everybody suffers with in the uk unfortunately and I suppose those who cannot be out in the sun.

It won’t hurt to take an over the counter vit d supplement if u definately know it’s low

[chrisj]

Hi - My vit D level was tested a few years ago and it came back low. I was feeling more tired than usual, muscle aches and breathless. I told the rheumatologist how I was feeling and she suggested low vit D, then had a blood test done that confirmed it

I also found out that I dont make vit D any more so have been on prescribed supplements ever since. Sitting in the sun doesnt help, and as I burn easily I could never sit in it for long anyway

I would say talk to your gp

[Chanpreet_Walia LUPUS UK]

Hi Kismetsoul,

Are you taking any vitamin D supplements for this? It has been noted that people with light sensitive conditions who avoid sunlight are at risk of vitamin D and calcium deficiency.

For tips and information on coping with light sensitivity, read our blog article here: lupusuk.org.uk/coping-with-...

[Kevin53]

Well worth taking a vit D supplement. Best wishes Kevin