Vitamin D and PMR: Since joining this site, I have... - PMRGCAuk

PMRGCAuk

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Vitamin D and PMR

Chihuahua1 profile image
10 Replies

Since joining this site, I have learnt a great deal about PMR and GCA.

I have read several post over the months and I have noticed a trend. Many of us with PMR have been found to be vitamin D deficient. I'm now beginning to wonder whether there is a link between the two. Is the vitamin deficiency causing PMR, or is the PMR causing the deficiency? Or is it just a coincidence? It would be very interesting to find out if there is a correlation between the two. What do others think?

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Chihuahua1 profile image
Chihuahua1
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10 Replies
Runrig01 profile image
Runrig01

Vit D deficiency is supposed to be excluded, in the work up to a diagnosis of PMR. If found to be deficient then that should be treated before diagnosing PMR. This is because Vit D deficiency can cause similar symptoms to pmr. It may be a course of Vit d treatment would be all that is required and not steroids. PMR is a diagnosis of excision.

My Vit D levels are always very high at 125-150.

HeronNS profile image
HeronNS in reply to Runrig01

My vitamin D level turned out to be very high when tested - at the end of winter no less. 169. I suspect a long ago diagnosis of (non-symptomatic) sarcoidosis, as granulomas associated with this condition actually convert inactive D to the active form. As if PMR, pred and bone thinning hadn't already made life complicated enough! 😡⏰☕

polkadotcom profile image
polkadotcom

There is a trend, you are right, but it isn't confined to those with PMR. From what I have read recently about 85% of those over 60 are vitamin D deficient. I can't remember the % quoted for the two middle groups but to me the most alarming figure was for children. In some cases they were so deficient that they were immediately put on high doses of Vit D.

HeronNS profile image
HeronNS in reply to polkadotcom

Apparently even rickets has reared its ugly head again!

PMRpro profile image
PMRproAmbassador

Many autoimmune disorders are accompanied by low levels of vit D but it isn't really known which comes first. A study in Finland (where low vit D is endemic) found that giving babies vit D supplements as newborns resulted in a lower level of development of Type 1 diabetes when they reached their teens - something else that is far more common in Finland than most countries. There is also a correlation between low vit D and the development of asthma - also something that is a result of a disordered immune system.

As runrig has said, lack of vit D can cause similar symptoms to PMR and should be excluded first of all. And yes, rickets and osteomalacia are now being found in young children - most likely because their mums use Factor 50 sunscreen on them when they do go out and they spend a lot more time in the house playing on digital devices etc. We've been told for the last 40 years not to go out in the midday sun (the only time it strikes the skin at the angle required to trigger production of vit D), slip, slap. slop, use mega-factor sunscreen - result: very little vit D produced... There is a very high level of vit D deficiency amongst dermatologists in the Australia!

Most auto immune diseases are associated with low levels of Vit D ( Behcets syndrome, Lupus, Vasculitis etc ). No one knows if it is cause or effect. It's probably endemic on the general population as well but no one tests for it. I know replacing my Vit D made no difference to my symptoms. Worthwhile getting your Vit B12 checked as well.

PMRpro profile image
PMRproAmbassador in reply to

They didn't test everyone but they did do a study here that showed well over 80% were deficient - and that is at a latitude about the same as Turin where theoretically we can make vit D all year round!

Rabbit1951 profile image
Rabbit1951

I have been taking calcium citrate with vitamin D plus one a day magnesium for many years. I was diagnosed with Polymyalgia 2 weeks ago. It did not stop me getting the disease. But I will continue taking them. Hope my input helps. 😍

PMRpro profile image
PMRproAmbassador in reply to Rabbit1951

The calcium and vit D supplements are nothing to do with the PMR - they have been shown to be useful because taking pred makes you lose more calcium in the urine so having more to start with maintains the supply for your bones. Vit D is essential for the absorption and use of calcium in building bone.

jinasc profile image
jinasc

I take 1,000 units per day as a maintenace dose after being Vit D deficient twice. Once last November when I had an operation. but I was given the higher doses on prescription and within two weeks, back to correct level.

I buy them from Boots, about £5 for 90 tablets. Result, Vit D maintained at the correct level. I have a Vit D test twice a year, but then I have a very good GP practice.

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