Vitamin D3 and K2 supplement - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Vitamin D3 and K2 supplement

timetoretire profile image
6 Replies

I have been told and done some research into how the above supplements can help with Raynaulds and Scleroderma . Has anyone tried this?

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timetoretire
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6 Replies
MissusTee profile image
MissusTee

I've read research indicating the link between autoimmune conditions and low vitamin d levels. I've had a chronic deficiency myself in the past. Also the link between Coronavirus and low vitamin d levels. Not sure about vitamin k though.

DaisyLA profile image
DaisyLA in reply to MissusTee

Hi! I read the same studies and started taking vitamin D after I was told I was deficient, but that seemed to exacerbate my calcinosis cutis making it worse.... so I’d be careful adding vitamin d....

MissusTee profile image
MissusTee in reply to DaisyLA

I didn't have much choice as it was that low. I do get calcinosis though so I'll bear that in mind thank you, I didn't realise that I thought that specialists didn't really know the cause of calcinosis.

cowhide profile image
cowhide

Haven't seen any data about vit K and Raynauds and scleroderma, however, it is widely known that Vit D deficiency is more common with autoimmune disease - linked to inflammation. You should have your levels tested, if you are very low then an over the counter supplement won't be enough to help, you will be prescribed a very high dose for a few months. After about 3 months on a high dose I am now on 2000iu/day which seems to be enough to keep me in the normal band. Contrary to one of other replies, which cites a single anecdotal link to Vit D supplementation and calcinosis, I have not seen, despite extensive reading, any link between the two. In my case, again, purely anecdotal, my calcinosis is worse when my Raynauds has been bad and tends to affect the bits where my circulation is worst (one damaged finger, knees and one elbow).

homeat42 profile image
homeat42 in reply to cowhide

I`ve been on 1000iu of Vitamin D3 for 10 years now after being diagnosed with Ssc with primary Sjogrens , Scleroderma and Reynauds. I took 25000iu for 1 month to kickstart the process then 5000iu for 1 month then onto the 1000iu. The only medication I do not have a problem with is Prednisolone, all the major medications give me awful side affects. 10 years ago there was little or nothing for the layman to read up on D3. Scientific trial papers were available, which took some working out, it took me 3 months solid homework. I followed the solo trial of a Japanese scientist and have only had a few major flare ups since. The only link I found ( I have lost that link now) regarding D3 and calcinosis was of the kidneys and suggested cutting down on dairy products. I`m really not sure about that, as calcium is part of our human makeup and we need it.

I am an expert on me and my condition "only" and not you and yours.

Coming to terms with this condition is the best thing to do. We did nothing wrong to get it, we`re just unlucky. Try and lose the fear and relax, your body will thank you for it.

Find out as much as you can and then have some questions for your consultant ready at your next appointment.

Don`t believe everything you read especially on the internet.

John

barbarahealth profile image
barbarahealth

I have not heard about vitamin K or vitamin D3 but Vitamin B3 is excellent. 100mg twice daily and the blood starts to move giving relief in minutes. Only side effect is a hot flush sometimes right after taking it. With that small dosage u often do not get the flush. They are finding more & more uses for B3. Involving heart probs. and many other probs. Ijust looked it up as I think I am starting to get Carpel Tunnel Syndrome & it is listed as being good for that too.

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