calcium and vitamin D

[Mashed]

Unfortunately I never got round to joining the PMRGCA uk ( brain sieve forgets to do a lot of things!) and so didn’t hear the speakers from the latest AGM. I have joined today! I was never prescribed calcium when I was diagnosed a year ago. I was told to buy Vitamin D 3000iu and I take it daily ( vitD3 & K2) Having read stuff on this brilliant forum I also bought calcium citrate. I take 1 tablet which is 250mgs and try to eat a calcium rich diet. I was just wondering what the experts current advice was regarding these supplements? Many thanks in advance.

[piglette]

It is recommended that people on long term steroids should take vitamin D with calcium. They are normally prescribed when you are diagnosed, although it may be cheaper to buy them over the counter yourself as you currently are.

[Mashed in reply to piglette]

Thank you for this.

[GCAsurprise]

My rheumatologist instructed me to take Calcium 600 mg twice/day with Vit D3 3000 iu once daily. My naturopath recommended I take Vitamin K with the D as well.

[Mashed in reply to GCAsurprise]

Thank you for your reply. Much to think about isn’t there.

[DorsetLady PMRGCAuk volunteer]

One of the most common on prescription is Adcal-D3 - one tablet taken twice a day

ADCAL -D3

[Mashed in reply to DorsetLady]

Many thanks always very helpful.

[Koalajane]

I was discovered to have vitamin d deficiency prior to my PMR diagnosis and prescribed d3, after diagnosis this was changed to Accrete D3 which I take twice a day. I also purchase k2 to take as well

[Mashed in reply to Koalajane]

Many thanks for getting back to me.

[tangocharlie]

The AGM talks were quite interesting and now you're a member you'll be able to watch the recordings when they're available. I've been researching all this stuff as unfortunately I've got spinal fractures due to osteoporosis. As with many things, the doctors trot out we need calcium supplements but I've just watched a prog by Tim Spector and Cyrus Cooper (one of the world's leading experts on bones who all rheumatologists look up to) and they say calcium supplements are useless and they 'wouldn't give them to a dog'. They say 'Just because our bones have calcium in them doesn't mean that taking calcium improves our bones'.

So where does that leave us if the experts disagree? Personally I'm leaning towards the conclusion that we should all be on something far stronger than calcium tablets or alendronic acid eg Zoledronic infusions and basically the talk on Saturday with the eminent Prof Emma Clark said you need to talk to your doctors to find the best solution for you.

Meanwhile here's the link to the talk which is well worth a listen 'What to eat to avoid osteoporosis'

youtube.com/watch?v=09iguXG...(Not working as expected?)

[Omanain in reply to tangocharlie]

Thanks for this, It has given me a lot to think about. I was using HRT until my early sixties as this was advised by the Osteoporosis Society over 30 years ago. I had to stop because I did not have the energy to fight my case any longer. I really wish I had kept it up, but that wont help will it?!!

[tangocharlie in reply to Omanain]

HRT is stil recommended and they mention it in the video. Unfortunately when I wanted it when I was early 50s they were taking women of it due to some supposed cancer scare. And then later when I enquired again the GP said I didn't need it because I wasn't having troublesome menopause problems - they weren't thinking about the wider benefits of it like preventing osteoporosis and they still dont. A bones specialist told me there is no point taking HRT at my age but how do we know that? I doubt many have tried it or there have been trials into its efficacy in your 60s. Oh I wish I'd hung on to my hormones (to paraphrase Pam Ayres)

[Omanain in reply to tangocharlie]

To be honest, I wasn't exactly truthful with my GP and told him I was having troublesome menopause problems. They were too scared of HRT, to prescribe it for future bone health. And they mock us for believing the various scares!

[tangocharlie in reply to Omanain]

Ha ha good for you. They say Trust me I'm a Doctor and think they know best, in fact they are sure they know best, but that's not always the case. Knowledge changes so quickly these days and we get new research and insights coming along but they don't or can't keep up with everything. Then like you say they mock us for Googling something or claiming to know something they don't! You have to laugh or you'd cry

[Omanain in reply to tangocharlie]

I realise they can't keep up with everything, it is just frustrating when they won't listen to people like us with long term health problems when we have done our research. Still the last GP seemed happy for me to Google, all he said was to be careful which sites I use, which of course I am. It would save them a lot of work and expensive tests if they would just trust us a bit. I agree we are best to keep seeing the funny side, even if it is ludicrous sometimes.

[tangocharlie in reply to Omanain]

We have to keep trying, chipping away. The best rheumatologists listen to people like PMRPro

[Mashed in reply to tangocharlie]

Thank you very much I will definitely have a listen and weigh it all up.

[Mashed in reply to tangocharlie]

Thanks so much for the link. I will be very interested to listen.

[Thelmarina in reply to tangocharlie]

Spector’s finding were reflected in Dr Emma Clarke’s webinar at the AGM last week. She suggested that it’s worth checking your normal calcium intake before embarking on supplements. She said Vit D3.is good but no known indication that K2 is of use. Yoghurt as a stomach protector doesn’t work (damn!) but good source of calcium. However, the Gastroentologist who spoke and whose name I can’t remember, said that PPI is not required once below 10mgs unless there are other conditions involved. Check with GP if you want to come off it and prepare for acid rebound before your system resets itself. Personally I’d taper and not just stop! Emma is very honest about the upside and downside of biphosphonates - which I can’t spell. Worth looking at the recording. Thanks Tango C for the Spector recommendation. What a saga it all is. Trial and error, random nature of advice, fingers constantly crossed. Bless us all 👍🏻❤️xxx

[tangocharlie in reply to Thelmarina]

If I remember right she also said there is a test you can have but no reliable way of checking calcium levels? There is also no way yet of looking at the inside of your bones to tell what state they're in. So yeah, it's all hope and fingers crossed we're getting the right advice. The lovely gastroenterologist was Christian Selinger from Leeds.

Tapering off Omeprazole slowly has been mentioned on here before there was an article written by a pharmacist on it but the link doesn't seem to work now.

A quckk Google on stopping PPIs comes up with advice such as: How Long Does PPI Withdrawal Last? If you quit cold turkey, you can expect your withdrawal symptoms to last anywhere from one to three months. That's right – months. This is because those acid-producing cells are going to need to re-regulate themselves, and that takes time.

[Bcol in reply to tangocharlie]

I tapered off over about six weeks, taking one less tablet each week until I got to the week when taking none. Had no problems.

[PMRpro Ambassador in reply to tangocharlie]

And in the meatime cause reflux problems!!!! TAPER!!!

[HeronNS in reply to Thelmarina]

It is actually not quite true there is no evidence that Vitamin K2 is helpful for bones. The Japanese have known for a long time that natto, which is the source for Vitamin K2 supplements, seems to prevent osteoporosis, and their research bears it out. I can say that Vitamin K2 appears to have cured my very sensitive teeth! (It did not happen overnight, just a side effect which occurred over a couple of years as I started taking Vitamin K2 supplements to help my skeleton. I previously was already taking D2 and calcium.) Dentists are the ones who tend to know more about the benefits of Vitamin K2,

This vitamin has become deficient in the modern Western diet as our animals no longer make it for us owing to their changed diet, and our own gut does not convert enough Vitamin K1 to effectively help our bones.

[Thelmarina in reply to HeronNS]

That’s interesting Heron, thanks - especially about the teeth! Dr Clarke also said that D3 was the one to take and that 800iu up to 1000i.u. daily was sufficient. Your thoughts on that would be good.

[HeronNS in reply to Thelmarina]

Yes, I was pleasantly surprised my teeth improved! They'd been so bad I remember calling my husband one day to bring my sensitive teeth toothpaste to me where I was working because they were so painful.

As far as I know that dose of Vitamin D3 is standard and the best way to determine if it's best for you is to have a blood test, preferably at a time of year when you won't have received benefit from sunshine if you live outside the tropics. Sometimes older people need more just because of reduced ability to absorb nutrients. And then there are people like me who tend to run a higher D level because of (otherwise non-symptomatic) sarcoidosis. So it really is best to have a blood test just so you know your own individual level.

I have also read that what is traditionally considered a good blood level of Vitamin D may actually be somewhat too low. This is an interesting site:

vitamindsociety.org/

[Thelmarina in reply to HeronNS]

Thanks Heron 👍🏻

[Gangley in reply to tangocharlie]

This was indeed interesting. Not sure what to do now - when I was diagnosed with GC A was told I should have 1200 Calcium per day, Vit D & Alendronic Acid. Would like this talk to be true - hate taking pills.

[tangocharlie in reply to Gangley]

Other bisphosphonates are available by way of infusions. I don't think that with risk factors such as age and on steroids we can afford to rely on diet and exercise alone, but that's only my opinion and I'm now very risk-averse. I hope you get over and through GCA quickly

[Gangley in reply to tangocharlie]

Thank you. Actually, I am very fortunate, my GCA only lasted 1 year but I am still taking the Vit & AA. I will be discussing with my Rheumy Sept 25 when I see her. I still come to HU to learn what I may need to do if I relapse. - I am one lucky lady really. Wishing you well.

[Thelmarina in reply to tangocharlie]

That is also what Dr Clarke said. She was very clear about the value of bisphosphonates in their various forms for osteoporosis and old age.

[Preposterous]

Thank you for sharing the link to the Zoe discussion which was interesting and particularly useful as I have just discovered (following a DXA scan) that I have osteoporosis & took my first Alendronic acid tablet yesterday. It’s a bit confusing about whether taking calcium supplements is beneficial, but it seems that’s more to do with having PMR and taking steroids rather than taking them for osteoporosis. All in all it’s good to gather as much information about the various conditions that befall us as we age…

[Mashed in reply to Preposterous]

Sorry to hear about your osteoporosis diagnosis. Thank you so much for getting back to me.

[HeronNS in reply to Preposterous]

As you know, taking calcium (with the other micronutrients which enable good absorption such as D, K2, magnesium, etc.) is to prevent steroids from causing bone thinning as prednisone interferes with calcium metabolism. These nutrients are, however, good for our bones whether or not we are taking medications. Incidentally, calcium interferes with pred absorption, which is why we are told not to take them at the same time.