Vitamin D deficiency

[erky]

Have been told that i have a vitamin D deficiency and these are the reason i have been experiencing muscle and joint pain. Has anyone else had experience of this?

[Lupoid]

Yep, I get my vit D topped up around this time each year. Once a month for four months. If you're questioning as to whether it is additional or instead of, look at the bigger picture... vit D deficiency can cause aches/pains but it's not the same as Lupus or Fibro pain. Look at your other symptoms. I've been diagnosed with SLE (due to rashes + abnormal bloods), Fibro (because of specific sensitive areas) AND vit D deficiency (again bloods).

[erky]

Also have SLE diagnosed earlier this year and since have been avoiding sun etc although this blood teat was taking earlier in the year before i had a diagnosis so imagine levels of vit d will be even lower now, hope fully medication will improve this. Obviously i realise that SLE itself will give similar aches and pains but i am hopeful that this will help things improve.

[LynseyH]

i found that taking a strong vit D supplement def helped with some of my pain - still waiting on the miracle cure 4 the lupus tho lol.

[EOLHPC]

Hi everyone

Can someone (lupoid or erky?) tell me if the blood test for vit d levels is part of a normal blood count test, or what? My gp goes vvvv vague when I ask these sort of ?s! And I don't see my rheumy re all my last SLE etc etc tests until April: unless I have a worrying flare, but so far so good on plaquenil 400 for 4months since diagnosis confirmed - of SLE since infancy

Thing is, a friend from France says over there it's standard to test bold for vit d levels & she thinks the 2000 iu vit d fish oil supplements my pain specialist got me taking daily for over a year now may not be the best kind to assimilate. So I'm wondering what our uk drs do about testing blood for vit d- especially as sounds like lupoid is getting some sort of special once every 4 month top ups: is this injections?

Maybe I should start a new question line about this?

[erky]

Hi i had these bloods taken at my first visit to my Rheumy six months ago got the results six months later. Although had no bloods on this visit. Your gp could easily test you. Sorry can not be much more help new to all this myself. Interesting how different countries manage things.

[Ani-]

Hi,

I am in the middle of finishing a section of writing on vitamin D and lupus. In general most people in the UK will have low levels of vitamin D and this has been linked to an increased risk and/or severity of many diseases diseases such as various cancers, cardiovascular disease, diabetes, rheumatoid arthritis and lupus. In all the studies I have reviewed so far (over ten) patients with lupus have exhibited low levels of vitamin D. It is now known that vitamin D is important for far more than just bone/muscle health. Low vitamin D levels are linked to increased inflammation in the body and also depression and poor mood. Low vitamin D is also linked to chronic widespread pain.

Currently doctors in the UK do not test for vitamin D as standard. I would suggest that everyone with lupus ask their consultant to do a blood test to check vitamin D levels. It is currently suggested that levels need to be 30ng/ml (75nmol/L) for optimal health. In a study by Hypponon and Power in 2007 87% of individuals had levels below 75nmol/L in the winter and autumn but even in the spring and summer 60% had levels below this.

Evidence for low levels of vitamin D in lupus is mounting. Studies suggest that low levels are associated with increased lupus activity too.

As soon as I have my research paper finished I will be taking it to my rheumatologist - my next appointment is 31st October.....if I can manage to finish by then I will !!!

P.S. please remember not to take supplements without checking with your medical doctor first.

[EOLHPC in reply to Ani-]

hi ani:

how is your research paper on vit D going? have found more out recently - especially re metabolism of various forms of vit D - and remain very interested in learning what i can about this. my NHS pain specialist added vit D to my antiinflammatory diet (2000mg vit D per day) over a year ago, and...my recent 3 yearly dexa scan report shows an improvement in my osteopenia level: am wondering if my vit D and diet are helping - especially as lameness and spine problems mean i can do only v limited weight bearing activity. i have a feeling i'm a lot older than you are (58)

[Ani- in reply to EOLHPC]

Hello,

Thank you for asking about the paper - My first draft is finished so i'll be taking it along to the Cambridgeshire lupus meeting on Saturday. It still needs a lot of editing but all the information is down and the references are there. Usually it is vitamin D3 that is easiest for the body to metabolise and the form of supplement usually recommended. I have also reviewed Omega 3 fats, physical activity, overweight/obesity, stress and mind-body interactions. I am pleased with how much research I could dig out! I hope to finish the paper and then translate it into a less scientific format that the public can gain benefit from. It seems like an overwhelming project at times and I get worried about money because I haven't been able to find work since May....but I am passionate so I continue with my small steps!

It is great that your NHS pain specialist is even using vitamin D and diet! So many doctors are not aware of the research on these topics. I am sure the diet and vitamin D are helping with your bone strength, there are many studies which show this could be possible.

Well done for using an anti-inflammatory diet - I don't think many people are aware of the amazing benefits that can be gained through diet and lifestyle.

All the best for now

Ani

[Hidden in reply to Ani-]

Great news about your research!

Thanks for the encouragement: means a lot because you're so informed.

Maybe I'll see you in Cambridge tomorrow:hope you'll say hello if you spot me first. sounds as if the will be quite a crowd there

Wbw

[Hidden in reply to Hidden]

P's have got myself in a pickle: am also Barnclown...must sort this out!