Calcium supplements - are they essential for PMR

[Tiggy70]

I saw my GP a couple of days ago and whilst there he reviewed my Calcium/Vitamin D3 supplements. I currently take an EvercalD3 tablet twice daily, a super strength vitamin D3 +K2 tablet containing 4000 iu vitamin D3 plus a multivitamin tablet. This gives me calcium intake of 3000 mg daily and 5000 iu Vitamin D. He is happy with my vitamin D3 intake but has told me that I don’t need to take the Evercal D3 tablets anymore as I don’t need the extra calcium. I reminded him that they were prescribed by my Rheumatologist because of PMR and I was worried about just stopping them.

He said that the NHS is about 50 years behind the current thinking on our daily calcium needs and is founded on when Rickets was rife in the UK. He said that as long as I include cheese and yogurt in my diet regularly I don’t need the supplement .

I’m not sure what to do? Is he right about the calcium? I’m not due to see my Rheumatologist until mid April so can’t check with him. I had a private Dexa scan in March 2022 which showed I had osteopenia but my T scores were ok. I’m about to book a repeat Dexa scan for the end of March. It’s so hard to know who to believe. I don’t want to jeopardize my bone health by stopping the calcium. Has anyone else had this issue? Thanks Tiggy.

[PMRpro Ambassador]

You are certainly taking quite a lot when you consider the body is only able to absorb about 500mg calcium at a time, I think the GP is maybe confused though: Evacal has 1500mg calcium carbonate per tablet which is 600mg calcium and 1200mg is the limit recommended for older women so that is in line with the guidelines and has nothing to do with rickets which is more vit D related.. Which actually is rampant in the UK again - Southampton hospital reports increasing cases amongst middle-class toddlers whose yummy mummies smother them in Factor 50 so the vit D is missing. The reason we need calcium supplements is that pred tends to wash out calcium so it isn't absorbed as well and having more fish in the lake makes it more likely some will be caught!

I used to take something similar to AdCal but it caused bladder problems so I stopped and concentrated on getting calcium from food. Last time we looked the dexascan was still fine. It depends on your diet - I was on calcium originally and then the dietician wanted me to drop dairy because of cholesterol levels. No dairy equals very little calcium. Now I enjoy my cheese Look at your diet and assess how much you are getting from diet - not just dairy though,

webmd.com/diet/foods-high-i...

but in the UK NOT orange juice, that's a US thing.

[Tiggy70 in reply to PMRpro]

Thanks for your reply and link. It’s interesting as I had no idea that some of the recommended foods listed contained calcium. I do have a varied low carb diet and eat cheese and yogurt and veggies and have milk in my daily porridge and tea so I may be getting enough calcium but don’t want to take chances. I didn’t know baked beans were a good source - I love baked beans on toast now and again😜. I’m going to continue taking the extra calcium until I’ve had another DEXA scan next month and have spoken to the Rheumatologist. If I do take too much calcium does the body just flush it out?

Re the vitamin D I was always worried when I took my American toddler grandchildren to the beach. They have very fair skin and red hair and burn very easily. I slathered them in Factor 50, protective spf clothes and hats in case they went home looking pink. I was checking them constantly as they were in and out of the pool and sea constantly. My daughter in law would check them over very carefully when we got back from the beach - pressure!!

[PMRpro Ambassador in reply to Tiggy70]

It depends - both jinasc and I developed problems associated with too much calcium present in the body. It has to go somewhere and if you have decent bone density I suspect it goes other places - one area is the blood vessel walls which causes hardening of the arteries. That's why there is a the big call for taking vit K2 as well which is supposed to direct the calcium into the bones. It can also end up forming grit in the urine, kidneys and gallbladder and ultimately forming kidney and gall stones.

[darkred in reply to PMRpro]

Yes, I think there needs to be much more education about the points you just listed. The old way of thinking is so entrenched in people's minds; most of us are not aware of the new guidelines or don't readily accept them.

[darkred in reply to PMRpro]

Cow's milk was a major part of my diet in childhood and adulthood. Around age 50, I became lactose intolerant. I now drink soy milk, fortified with calcium carbonate. PMRpro, do you have an opinion on this way of getting some calcium?

I used to take calcium supplements religiously, now only sporadically. Even eating a small meal takes some determination.

[PMRpro Ambassador in reply to darkred]

Fortified foods are just the same as supplements - just in disguise so you get the same effect as a good diet. In the case of m*ilks and plant-based spreads, they get additives in them to parallel the natural products.

[Pr0jection in reply to PMRpro]

Is fresh orange juice OK? Here in Cyprus we have so many oranges and the shops make available machines that squeeze the oranges so no additives. I know that oranges contain some sugar......

[PMRpro Ambassador in reply to Pr0jection]

It is OK if you aren't trying to cut carbs or diabetic *orange juice is a bullet of a sugar spike, less so with the whole fruit and its important fibre - but the point of my comment is calcium in the diet and in the USA they fortify all sorts of things, Oranges naturally have little calcium, but many orange juice varieties (already a major source of vitamin C) are now fortified with calcium - IN THE USA. For example, frozen orange juice from concentrates with additional calcium contains 1514 mg of calcium per cup so obviously would be a good source of calcium. But not fresh juice, lovely as it is!

[Hidden in reply to Pr0jection]

Love Cyprus....which part do you live in ? I've never taken Calcium supplements. Only D3, K2 and Magnesium.

[Pr0jection in reply to Hidden]

We live in a small village just outside Paphos. Have been here almost 20 years and still love it. I eat foods high in calcium wherever possible, but also take a combined calcium and Vit D. I drink goats kefir for my K2 and I take magnesium.

[Hidden in reply to Pr0jection]

We holidayed for many year in Protaras. Daughter went back last year to see her friends she'd made while working out there for 6 months when she was seventeen. Such lovely people the Cypriots. I want to return too. Watched a programme the other night on Cyprus verses the Turkish. Very interesting.

[KCRoyals in reply to PMRpro]

"I used to take something similar to AdCal but it caused bladder problems". This seems to have happened to me too. Didn't realise AdCal could be the cause. Interesting.

[PMRpro Ambassador in reply to KCRoyals]

Simply too much supplemental calcium really - not absorbed as well as dietary and you excrete the rest via the kidneys ...

[piglette]

It will be interesting for you to get your Dexascan results. My latest results were of Ironman or stainless steel woman anyway!

[Tiggy70 in reply to piglette]

🤣👍

[keeptalking]

I had a phone call from my gp telling me to stop taking my calcium tablets at once. My bloods were saying I had too much calcium which could be harmful. My rheumatologist agreed.

I had been taking adcal since pmr diagnosis three years earlier. I haven’t resumed them in the last 18 months and haven’t needed them. I do try to think about a healthy diet though. Be careful not to overload yourself with supplements.

[Pawscat11 in reply to keeptalking]

I have had exactly the same and now only take 1 calcium tablet every 2 weeks. It was 3 times a week.

[Bcol]

Hi, I've been on Pred for around 2.75 years now and have never taken extra Calcium tablets. I eat cheese and yougurts with a good diet and never felt the need for anything extra. DEXA scans and blood test results all fine. Doc has never suggested extra Calcium but does give me the Vit D. I also take K2.

[Temoral]

I have stopped calcium tablets...agreed with rheumy and GP....plenty in diet, and too much is inadvisable. Still take organic Vit D, as I did before GCA diagnosis. Just starting taper DSNS to 4.5...best wishes everyone.

[Hidden in reply to Temoral]

Good luck with your taper. I too am using DL's regime. Currently on 6mg....have to remain on it for ages before I attempt 5.5, then the dreaded 5mg which is my hurdle. Something tells me I'm going to be okay this time round as I've gone so much slower. Hopefully, by December this year (which will be exactly 4 yrs) I'll manage to be off Pred....or at least a low maintenance mg.

[Temoral in reply to Hidden]

I had to stick on 9, and just did an extra week on 5, as the grandsons were here for 3 days! We will get there, even if sometimes the traffic lights are on red, green will follow .....and breathe. Every good wish. X

[Hidden in reply to Temoral]

Best wishes to you too. I no longer have young grandsons....done that !! Mine are now grown up and now help me. X

[PMRpro Ambassador]

In a study that found that cardiological problems increased and could be linked to unnecessary calcium supplements in younger healthy women, the link was found in subjects who took only calcium - it wasn't found when vit D was also taken.

[Pr0jection in reply to PMRpro]

Several years ago, before I was diagnosed with PMR, I was advised not to take calcium supplements after having gallstones/gallbladder removed. However, when I was diagnosed I decided to take a combined supplement of calcium/Vit D + extra Vit D and goat's kefir for Vit K2.

[darkred in reply to PMRpro]

Hmmm...and now the thinking is that vitamin K-2 is also essential to put the calcium in the bones, rather than the heart. I pointed this out to a rheumy I saw briefly about 5 years ago for a minor problem. This doctor, ready to retire, was not impressed with the addition of K-2. Though scientific "facts" often change, I'm going with the newer thinking.

[Ullswater]

I am shocked !5000 vit d 3? I posted last week predominantly about my difficulties taking calcium / vit d combination prescribed by my GP. Of 1000 mg/1000IU. My consultant rheumatologist still keeps saying I have vit d deficiency. Exasperated, I asked advice of this forum, and now taking 2000iu vit d3 plus k2. Calcium still to be sorted, but I'm on the case.! ( I am currently taking 4mg pred, slowly reducing slowly re DL plan, from 3x250mg infusions then 60 mg ( perhaps 80) in feb 2019)

Is 2000iu still too low to normalise my levels of d3 ? Should it be a build up to 5000iu or ok to just start taking that high dose...im now assuming I perhaps need it ? 🤔

[PMRpro Ambassador in reply to Ullswater]

Nothing wrong with taking 5000 IU a day - I always take 4000 IU to maintain my vit D - any less and it falls steadily.

mm.wirral.nhs.uk/document_u...

is the NHS rubric for vit D deficiency - they quote 3,200 IU daily for 12-13 weeks or 40-50,000 IU weekly in 1 or 2 doses for 7 or 6 weeks respectively.

When I started taking 4000 I just took it. My husband had periods using the high dose approach with special packs on prescription - his vit D was almost non-existent!

[Ullswater in reply to PMRpro]

Thank you, I will re read the wirral stuff which I think you posted last week ( thank you) ...and this time try to concentrate !!! It seems obvious now as to why my bloods haven't been right. Onwards and upwards with vit d3, inwards and downwards with the prednisolone ! 😆 🤣