RA sufferer and Vit D deficient.: Not sure where else... - NRAS

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RA sufferer and Vit D deficient.

juneann profile image
46 Replies

Not sure where else to post. Blood test reveals Vit D deficient so my GP has prescribed supplement, but I have chosen to buy my own. Don't normally get caught up in all the supplement hype or buy them.

Question...10mcg or 25mcg?

Could I take 1 x 25mcg once every other day?

GP never mentioned Vit K needed alongside it, but as always lots of hype, but just because it's all over the web doesn't mean it's accurate or true.

Help!

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juneann
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46 Replies
Simba1992 profile image
Simba1992

Vitamine D3 deficiency is common among RA patients. In order for it to be absorbed optimally you do need K2. The daily optimal dose for D3 is 2000-5000iu. This is what I have concluded from my thorough research on the subject. 😊👍🏻

juneann profile image
juneann in reply to Simba1992

Thanks Simba, GP prescribed 800iu 1-2/day, no mention of Vit K. My levels are at 33 with 55 and above being normal.

Simba1992 profile image
Simba1992 in reply to juneann

Hi juneann,

The optimal level should be between 50-70. I don't think the 800iu/daily will correct your situation. If you are on RA meds and cannot benefit the D vit source from the sun. I think you should up your dose and add the K2 and eventually vit.A. Simba

Seahorse02 profile image
Seahorse02 in reply to Simba1992

My D levels were very low and dr prescribed 50,000units (yes fifty thousand) and levels are fine now. No Vit K prescribed. (USA)

mamainacrowd profile image
mamainacrowd in reply to Seahorse02

I'm in the US as well. Wasn't the 50K units for one or 2 weeks? My rhematologist does prescribe that way for me as well as 5K IU every day. When my levels dip lower, 10K a day. Either way, we are individuals and should get the doctor's say in the matter. I also buy my own and take K2 as well.

Seahorse02 profile image
Seahorse02 in reply to mamainacrowd

@mamainacrowd -

Glad to meet a local! :)

Unfortunately, no, I had to take the 50k unt vit d2 for months - I believe 5 months. I took it once a week. I can’t tell you how low my level was w/o going to dig up results, but it was so low my doc was shocked. Anyway, we monitor it now closely as I have to have monthly blood draws anyway due to Arava useage (along with Tremfya injections).

I no longer slather up with sunblock let me tell ya - let the sun shine on me! Now if I could just stop the sweat (but that’s another story:).

oldtimer profile image
oldtimer

What dose did the GP prescribe?

It is cheap to buy but the amount depends on how low your levels were.

And I don't think you need any other supplements with them unless indicated by your blood tests.

If in doubt ask a pharmacist.

juneann profile image
juneann in reply to oldtimer

Hi oldtimer, my GP prescribed 800 units on a months rolling supply on paid prescription each time. Normally Tesco and the like are much lower doses, however they offer 1000 units lasting 6 months at £4.00

Simba1992 profile image
Simba1992

Here is some interesting facts about RA and vit.D.

news-medical.net/health/Rhe...

Simba1992 profile image
Simba1992 in reply to Simba1992

One more link. Interesting recent study.

ncbi.nlm.nih.gov/pmc/articl...

juneann profile image
juneann

Thanks Simba. enlightening,

helixhelix profile image
helixhelix

In the summer I'm now fine with a good diet and sunshine, but every winter my levels plummet and I take D3 supplements and for the K I make sure I eat green vegetables every day.

medway-lady profile image
medway-lady

Ones for sale in say Holland and Barrett are classed as foodstuffs that gives you the clue....The Gp prescibes ones in far greater strenghts something like 35 times greater. So simple answer to get any real benefit take those prescibed and thats all. Plus as seen on the BBC pills in say H&B may not atually have any of the compond you think your taking in them. The pharmasist in Boots told me that its illegal in the UK to sell Vit D, OTC, in the amount needed to be theraputic in my case that was 45 pils three times a day at a cost of over £50 a day.

juneann profile image
juneann in reply to medway-lady

Yes but surely when the prescription dose is stated as 30 tabs at 800 IU and the likes of Tesco, Sainsbury's Nature's Best are listed as 180 tabs at 1,000 IU then the high street stores offer more. If I bought from Sainsbury's but at equivalent to the prescription price and dose I would be paying £66.00 instead of the £4.00 Sainsbury's sell at.

medway-lady profile image
medway-lady in reply to juneann

My presciptions are free but as I said they must not sell them in such qualities that I was prescibed. Ask Boots the pharmacy for advice bceause you might be suprised at the difference. Asking a qualified person as I did is free after all. And then you can make an informed deicision.

juneann profile image
juneann

Occasionally Brocolli and Green Peppers are the only greens I eat which don't get a mention, along with sprouts in winter. All boiled or steamed of course so probably pointless.

helixhelix profile image
helixhelix in reply to juneann

Broccoli is good. Eggs? Oily fish? I tend to avoid supplements where I can so do pay attention to eating fresh food. Much nicer than adding yet more pills to my daily pile. It seems to work for me as I now get vit d tested regularly and it's fine (apart from -about 3-4 months in winter)

The question is, do you want to avoid Osteoporosis? Whatever benefits vitamin D gives, the avoidance of Osteoporosis would be first on my list. All RA sufferers are at risk of Osteoporosis and Vitamin D3 and Vitamin K help to reduce your risk of this. I have Osteoporosis and it's awful. In my opinion worse than RA - which I also have.

juneann profile image
juneann

Thanks poemsgalore1, I though Vit K was only needed alongside excessive amounts of Vit D, as with all vitamins VitK can be just as damaging in excess.

Simba1992 profile image
Simba1992 in reply to juneann

Vit.D and vit.K2 work best together. There is an abundence of research on vit.K. I find it a bit strange that rheumatologysts leave it to the patient to educate herself on the importance of these vitamines and how our bodies are dependet on them.

Riedenise profile image
Riedenise

After going to my gp with terrible fatigue, it was found I was severely deficient in VitD. Normal range is level of 50, mine was 17. I was put on 2500iu twice a week for 6 weeks. I am now on a calcium and VitD tablet indefinitely.

If you're at all worried then get your levels checked, and take what is prescribed. As Poemsgalore said nothing none of us want to get osteoporosis.

Simba1992 profile image
Simba1992 in reply to Riedenise

It's not just a question of osteoporosis, vitD is needed for many important metabolic processes and as the study above found that 86% of RA sufferers have vit.D deficiency and it contributes to worsening symptoms in RA. Vit.D is thought to have a immunomodulatory effect decreasing inflammation. Look at the above recent study. Since RA together with ra meds decrease vit.D level I cannot but believe that supplementing and following up vitD levels on regular basis, is a good idea.What makes natural supply of vit.D from sunlight additionally difficult for many RA sufferers is the sunsensitivity meds bring with them.

AgedCrone profile image
AgedCrone

The Vit D your GP can prescribe will be at a greater strength than you can buy OTC....read the packet......OTC Vit D often contains a lot of fillers.

Most People with RA have low Vit D at some point.

My rheumy prescribed Vit D spray after pills brought me up to normal levels & so far my Vit D is at the right level on just the spray.

Unless you are on a very restricted diet you should get Vit K in your daily foods.

Hattie23 profile image
Hattie23

Been the same for few months. Am having GP stuff as my calcium low too as they go together. The boots vitamin d were not working as had used for years. And I'm in the garden or fresh air all year. The difference is amazing on adcal tablets and for three weeks first booster phials of vitamin d. I would thoroughly recommend this root. It's made a huge difference so I'm staying on them. Never had such good nails and all bloods going up again. Good luck. But boots D does nothing if your low. I feel much better now if that helps at all.

. Good luck

juneann profile image
juneann

Hi Hattie23, Which specific Boots dose and type were you using, perhaps you could send a link for comparison and elimination. Where do you buy Ascal?

Hattie23 profile image
Hattie23 in reply to juneann

Adcal is on prescription 2 x a day. I feel so much better and they all agree stay on it. Gp and Consultants. I think my d from boots were 10mg but have thrown away. Good luck. Trust in your doctors or change them if you don't!

Best wishes

Mummyola profile image
Mummyola

Hi June Ann my bit d is low had those tablets your dr prescribed also, you don’t need vit k if dr didn’t say so, if you can sit in the sun for 10 mins each day without sunscreen if possible have a bare midriff, if you feel your burning stop. Then put sun cream on and stay out in the sun as long as you can. Vit d is known as the sunshine vitamin, hope this helps.

Simba1992 profile image
Simba1992 in reply to Mummyola

Don't really know what this advice not to take vit.K comes from, certainly not based on scientific knowledge. To get sufficient amount of sun for needed vit.D you need to be a half an hout in the sun without sunscreen and at least 1/3 of your body exposed. If you are deficient and have a chronic inflammatory condition you still need supplementation with vit.D and K2. I think we all are aware that doctors do not always know everything.

juneann profile image
juneann in reply to Simba1992

As with all supolements you can actually take too much Vit K so not always necessary on low dose Vit D Simba1992.

Simba1992 profile image
Simba1992 in reply to juneann

You really need to take huge amounts of vit.K for it to be toxic. If you want an optimal amount of absorbtion of vit D you should always take it with vit.K, ofcourse adjusted to the vit.D dose you are taking.

Mummyola profile image
Mummyola in reply to Simba1992

You don’t need vit k if your on a healthy diet you should get all you need from that. Vit D is usually because we live in a mild climate with very little sun, to be in the sun without sunscreen for half hour is to long not to damage your skin. As long as you have your middle exposed is all you need according to the Endocrine Consultant I see told me. I have both RA and OA, plus type 1 diabetes along with Asthma, but I don’t class my self chronically ill, as fortunately I have them all under control. Folic acid six days a week is the only supplement I take, along with my meds.

juneann profile image
juneann

Thanks Mummyola. X

juneann profile image
juneann

Thanks whaleroad, there has been some unbelieveable figure floating around and advice being given which I really don't have faith in if I'm honest. There's also a Facebook site which really concerns me over the advice and opinions being thrown around with such confidence?

Simba1992 profile image
Simba1992

This may apply to healthy people but not to us that are chronicly ill.😢Here a link to helping better understand the importance of vit.K supplementing.

ncbi.nlm.nih.gov/pmc/articl...

juneann profile image
juneann

Crikey Londinium does anyone have the time to sometimes just enjoy life. I can completely follow what you're saying and understand keeping a balance, I just don't buy into the whole supplement frenzy. Yes if all someone is eating is processed food then perhaps they need to take a different approach but they may also be the people that know what they like and will continue with that "thank you very much". It amazes me how so many people will spend their time surfing the web researching, ordering and taking hundreds of supplements when they're not really sure why or if indeed their body needs them.

juneann profile image
juneann

Am I now expected to clap?

Simba1992 profile image
Simba1992

Yes Londinium, I have been wondering about this too. It's almost as if real facts really are not interesting or worth reflecting over. 🙁

helixhelix profile image
helixhelix in reply to Simba1992

Except that the article you link to doesn't really say that everyone who has a chronic illness needs to supplement. It is good in setting out the importance of vit K, but seems to conclude that whilst useful for osteoporosis and other specific conditions there is insufficient evidence for use in osteoarthritis. And no mention of inflammatory arthritis. So not sure what it proves?

I have a chronic condition, but I am not chronically ill. In fact because I take great care over diet, exercise and so on I am actually pretty healthy for my age. So I don't need to supplement (except as previously described).

Lincroft242 profile image
Lincroft242

I also have RA & I am very deficient in Vit D.. it has been a struggle for me to keep my level in a normal range.

My last level was a (10) normal is 30+... I now am take Rx Vit D again.

The dose is 50,000 units per week.. & have never needed to take Vit K...

Mummyola profile image
Mummyola

Think I’ll listen to my endocrine dr than the internet, as how do you know these dr on there are not just charlatans after your hard earned cash, as at the end of all these so called health videos there’s always a buy this and that and your be cured. America is full of them.

Simba1992 profile image
Simba1992

I know but then again there are a bit conflicting evidence on optimal level. High supplementation without K2 can in fact cause problems and being conservative is therefore safer. There are new studies that point in this direction. If doctors prescribe D3 without K2 because they do not have enough knowledge it's better to keep the supplementation lower.

Simba1992 profile image
Simba1992 in reply to Simba1992

Here is an interesting link on the interplay of vitD and Vit K.

ncbi.nlm.nih.gov/pmc/articl...

Simba1992 profile image
Simba1992 in reply to Simba1992

And on why you need K2 vith D.Some important things to consider.

vitamindcouncil.org/the-syn...

juneann profile image
juneann

Vit D overdose, there are people laughing all the way to the bank.

Hobbledehoy profile image
Hobbledehoy

I expected a big response to this & have read much, thanks to all. Apart from technicalities, I can't afford to get too caught up with supplements. I know that many of us in the UK are Vit D deficient, especially senior citizens. I take the standards sold at Tesco/Boots. I take it every day and double the dose when the sky is overcast & in winter, together with Magnesium. Medics are pleased with my levels, so I've just left it at that.

juneann profile image
juneann

'GP Behind Closed Doors' doc doesn't buy into all the fuss over Vit D. Cereal is supplemented with Vit D.

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