Should we take Vitamin D?: Hi everybody,its very... - NRAS

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Should we take Vitamin D?

Pythagorus profile image
29 Replies

Hi everybody,its very interesting to read all the posts regarding different responses to different medications and the generous support that is given.

I feel very fortunate to be well controlled on both Methotrexate and Benepali injections.

But my question is to all you well read people is the new advise from Health Secretary Matt Hancock that we should take Vitamin D as a line of defence against the corona virus. Has anyone had any medical advice about taking this supplement.?

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Pythagorus
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29 Replies
Paula-C profile image
Paula-C

During a telephone appointment with my nurse specialist I was advised to take Vitamin D, I told her I was taking a multi vitamin tablet everyday, she said that was fine.

nomoreheels profile image
nomoreheels

Aside from Matt Hancock's advice I've been prescribed Vitamin D since diagnosis (Adcal-D3, 1500mg/400iu twice daily) but also do have my levels checked annually as I have osteopenia/borderline osteoporosis. I have biennial DEXA scans. Whilst I understand his reasoning behind his advice or recommendation, not sure which, I’d still ask your Rheumy or Nurse as we can't be lumped with the rest of society. This from NHS may help further nhs.uk/conditions/vitamins-...

AgedCrone profile image
AgedCrone in reply to nomoreheels

Of course we all need to get our VitD checked...but as you say MHs latest advice...although sensible.... could well be a smoke screen...to cover the mess that seems to increase daily......a bit of hopeful news - no matter how speculative - is always jumped on by MPs who are in a hole!

Let’s wait and see what evidence appears from the research NICE is now awaiting.

Biofreak profile image
Biofreak in reply to nomoreheels

Same as you NMH. I have osteoporosis and have been taking Adcal since 1997.

AgedCrone profile image
AgedCrone

Hancock orders review into the use of vitamin D

digitaleditions.telegraph.c...

Make up your own mind....... but I guess the shelves will be empty very soon when people read this.

dawkin_S profile image
dawkin_S in reply to AgedCrone

Yep, I couldn't get my usual cheap vitamin D tablets after the first round of chatter about this. Luckily I discovered cod liver oil and malt extract, so I can feed my sweet tooth and vitamin D requirements in one go. ;)

nomoreheels profile image
nomoreheels in reply to dawkin_S

Note: If taking fish oil supplements you should avoid fish liver oil capsules (e.g. cod liver oil). These supplements contain high amounts of fat soluble vitamins A and D which, if taken in large quantities over a period of time can have toxic effects. Always use pure fish oil products instead. Fish oils can interact with some medications e.g. Warfarin. Always seek medical advice before starting supplements. nras.org.uk/diet-rheumatoid...

dawkin_S profile image
dawkin_S in reply to nomoreheels

Thanks for the tip, nomoreheels - I was taking fish body oils but it's too expensive for me at the moment, so just the Cod Liver Oil at a lower dose.

AgedCrone profile image
AgedCrone in reply to dawkin_S

Don’t overdo Cod Liver Oil.....in fact my rheumy said he preferred I didn’t take it...I just take the Vit D spray.....seems to keep my levels up.

One spray lasts me about 6 months & costs around £7.

dawkin_S profile image
dawkin_S in reply to AgedCrone

Oh that's interesting - did he say why? Was it the Vitamin A level?

AgedCrone profile image
AgedCrone in reply to dawkin_S

No idea... I hated the taste so was quite happy to switch to a nice tasting spray,But more than a couple of teaspoonfuls is not advised apparently because of VitA levels.

dawkin_S profile image
dawkin_S in reply to AgedCrone

Ah, I see - well I think I will be okay as the Vitamin A for the amount I'm taking is 42% of RDA, but I'll look into it also - thank you. :)

Brychni profile image
Brychni

Hi Pythagoras - not personally but I've read good quality articles and studies which say it's a good idea. Also lots of my friends have had their levels tested at the GP's with various problems and every single one was dangerously low and were put on supplements immediately.

There has been a lot of talk about how much to take though.

Brychni profile image
Brychni

sorry - I meant that I didn't have any medical advice, but I do take 1000 mg every day and have done for quite a few years.

AgedCrone profile image
AgedCrone in reply to Brychni

Are you sure...1000mg?

nomoreheels profile image
nomoreheels in reply to Brychni

It's so personal though isn't it? One recommendation I’ve seen for RD is 2000iu per day whereas I take 800iu (Adcal-D3) & my levels are 50 or thereabouts when tested. Someone else may need more, others less. Then we've to consider how much Vit D we receive through our diet (salmon, sardines, eggs etc, plus whatever we get from being fortified in our food), oy vey! I guess the only way to be sure is ask to be tested each year. But again, that score can depend on when tested... minefield!! 😯

Brychni profile image
Brychni in reply to nomoreheels

This was what I read in a major newspaper. about 2 years ago an article said people were taking too much, then the same paper said they'd been wrong and everyone should - can't remember - I give the children 400iu and husband and I take 1000. I used to take 5000!

Brychni profile image
Brychni

apologies, 1,000 IU

AgedCrone profile image
AgedCrone in reply to Brychni

😂🤣😅

Mmrr profile image
Mmrr

I was prescribed Vit D by my GP and rheumatology thought it a good idea too.

helixhelix profile image
helixhelix

My rheumatologist checks my levels every 6 months and prescribes Vit D as even with the supplement I am only barely into the acceptable band. I live outdoors for most of the year and just can’t seem to hang on to vit D.

dawkin_S profile image
dawkin_S

I was tested and found deficient and advised to take Vitamin D every day by my consultant, way back when I was first diagnosed. I take it in one form or another every day - especially as I am too pasty to go out in the sun and make it that way. My understanding is that we don't get enough sun to make it in the winter anyhow, so supplementation is recommended then. You can get it from diet, assuming you're eating the right things. There's a pretty good round-up on the NHS site here: nhs.uk/news/food-and-diet/t...

Green230461 profile image
Green230461

My rheummy said low Vit D was the only constant with all of her RA patients and told me to take daily dose every day. She said the myth of You will feel better in the summer is true-more vitD with sunshine😎

Boxerlady profile image
Boxerlady

I was thinking about this earlier so really pleased that you posted about it 😊

I asked my GP to check my level a couple of years ago and it came back at the low end of normal so she just advised taking a short course of over the counter tablets.

I haven't had it checked since RA diagnosis so wonder if I should ask about it but I'm not sure who - rheumy clinic or GP? 🤔 I have started eating more oily fish since diagnosis...

Magician-be profile image
Magician-be

Currently there is no definitive studies showing vit D prevents Covid-19, but there is plenty indicating that it has a beneficial effect on the immune system, as well as the maintenence of bone health. Some RA treatments tend to reduce vit D retention especially corticosteroids.

Despite a well balanced diet and exposure to sun during the summer, my vit D levels are too low and so I take a weekly supplement. My Rheumatologist suggested 25.000 I.U. per week during winter and fornightly in the summer months, although monthy is considered sensible for most of N. Europe during the winter months even for those who are healthy.

Boxerlady profile image
Boxerlady

I think that this is something I need to add to my list of questions for my next rheumy/nurse appointment - whenever that may be! 🙄😂

RosieA profile image
RosieA

Like some others I take Adcal prescribed by the Dr, mainly because I am on steroids and have low bone density. I also take alendronic acid which I understand leeches Vit D and calcium from the body so really do need to make sure you have enough. I have also become photosensitive so I can no longer get Vit D from being outdoors as I have to cover myself in Factor 50. All so complicated but I have been reading about the link between low Vit D and autoimmune diseases. Deep joy eh. xx

pippin_fort profile image
pippin_fort

Yes everyone needs to take a high dose Vitamin D,. I take calcium and Vitamin D, but was told by my respiratory consultant that it was not enough and must take a high dose as well.

BoneyC profile image
BoneyC

I have Calcichew & Vitamin D on prescription. Not currently on steroids but have taken them and had Dexamethasone injections over the years and all DEXA scans have been ok. Precautionary.

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