I started my PMR in mid July 2024 and eventually was put on Preds by my GP on 27 August. Unfortunately my GP overlooked that I’m on Phenytoin for epilepsy and after 5 weeks I still had a lot of symptoms. I did some research and I now take the preds in the morning and the phenytoin in the evening and all seems well.
However the problem I have is that, because of the preds, the arthritis clinic at the hospital put me on calcium tablets, 2 number 1500mg Evacal D3 a day but they give terrible constipation. So bad that I have stopped them for a week to see if the constipation improves (it has).
I have now started one a day to see if that manages things better! But the worry is the osteoporosis risk if I stop or reduce them . I already have osteopenia because the phenytoin blocks vitamin D in the body so I do need to take care. I take regular dosage of vitamin D
My question is do other people experience this problem with calcium and if so how do they deal/ stop it?
Apologies for the long lead in to the question
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Ginntonic
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I didn't have constipation but it caused urinary tract problems - cystitis due to calcium forming grit in the urine. Once I stopped it, that improved a lot. I know others have had the same problem.
It is fine to just stick to dietary calcium if you can eat enough dairy and veggies with lots of calcium. Or you could try different calcium supplements - the main problem is calcium carbonate, the NHS uses the cheapest form, needless to say. I now use calcium citrate but I have to pay for it myself.
One option is to try 1 tablet and as much dietary calcium as you can - and try other brands, they do vary a bit. If that doesn't work - the right sort of cheese!!!
Yes, I asked my GP to change to Calcium citrate & she went all round the houses ( the NHS is a business [really], I cannot find any on my computer blah, blah) Basically she said no! Having read others comments I wonder if 1500mg twice a day is too strong anyway. Thanks for your response,
1500mg is the tablet with calcium carbonate - it is only 600mg of calcium, And actually - it possibly isn't on the NHS lists. I don't live in the UK - and to have anything different here I also have to pay for it. I just take one dose a day to make it less expensive. And eat cheese ...
I had osteoporosis ten years ago and with the help of denosumab injections it has improved to osteopenia. I never took calcium regularly as I simply couldn’t tolerate it. I take Vit D high dose daily (on prescription) and vitamin K2-Mk7 ( over the counter). I also eat lots of cheese and plain yoghurt, which has the extra benefit of reducing my consumption of carbs….
So, discuss with your doctor….but I haven’t found calcium supplements to be essential while on pred.
Good luck 😊
EDIT: think I’ve just been unusually lucky! Please see PMRpro’s post below
It is an essential if you are on any of the bone protection meds - they sequester calcium to your bones, the reverse of how osteoporosis develops. That can lead to low blood calcium levels and that affects muscles, including the heart. You obviously managed to get enough from diet - but extra calcium somehow is necessary.
Thank you PMRpro for this very necessary correction. I may have managed without supplements but that’s probably just luck. I do have blood tests every six months before the denosumab and the surgery has stopped prescribing me calcium.
But…..I’m thinking now that I should probably get some OTC. calcium as I’m probably skating on thin ice! I just couldn’t take those awful NHS tablets but it’s not worth making myself I’ll over….I’ll look online now and find some calcium citrate x
I don’t know if this helps but I take 2 capsules a day of a marine calcium supplement that I buy over the counter or order online, ‘together health’. This gives me 600mg a day plus my diet, and has been approved by my rheumatologist. I am also on a bisphosphonate (Ibandronic Acid) and have osteoporosis. I do find it easier to take and don’t appear to have side effects. 😀
If you go to the Royal Osteoporosis Soc website, they have handy calcium in food calculator. Have you had your Vit D levels checked to see if your supplements are sufficient given your Pheny?Calcium citrate is available OTC in the UK as far as I am aware. I cant tolerate Calcium tabs either .
The best form of calcium if taking pred is Calcium hydroxyapatite. Calcium citrate is also good. Don't take more than 300-400 mg in a single dose. As well as Vitamin D you should also take Vitamin K2. This vitamin sends calcium to the bones and helps avoid problems caused by calcium supplements when the calcium settles in places where you don't want it, like into organs or the walls of blood vessels.
And of course you don't want to be taking the calcium with other medications. When I was taking both pred and iron it was quite a juggling act. Had to enroll both lunchtime and bedtime into the rotation and from that discovered that calcium seems to be a good sleep aid! I always have a bit of food, usually a big spoonful of plain yoghurt with the bedtime calcium dose. 🍀
You might enjoy my story, but just extract from it what might help your particular situation as you have the epilepsy med to consider as well.
There is Vitamin K2 in cheese and prunes I believe, and some calcium supplements include K2 and Boron as well as Vit D. (Biocare is a powder with these added and I take that.)
There is K2 in some kinds of cheese, like Brie I think., and some fermented foods, like sauerkraut. The source of the supplements is fermented soy, from a Japanese food called natto. Mostly the modern Western diet is deficient in this vitamin because of the way we now feed our animals who used to provide it through dairy products. The human gut can convert some K1, but isn't efficient enough to provide all we need.
Have you seen this HeronNS? I've not seen the figures before.
"However, there is not yet a recommended intake set specifically for vitamin K2. You should get between 90 and 120 micrograms of vitamin K — but this requirement is based on the vitamin K1 needed to prevent bleeding.
Scientists studying vitamin K2’s effects suggest its benefits come with a daily intake of between 10 and 45 micrograms. But in the average diet, about 90% of the vitamin K consumed is K1."
I only know that Australia has RDA of 180 mcg. It's always frustrating to read about Vitamin K2 because it gets muddled when they talk about Vitamin K or bring in K1. They function differently in the body and should probably have different names, like some of the B vitamins do. Well, they do have different names, but impossible to remember. Vitamin K1 = phylloquinone, Vitamin K2 = menaquinone.
I have been trying for years to find out if K2 is a problem with anti-coagulants, as I know increasing one's usual amount of K1 when on warfarin is a problem. It seems like K2's cardiovascular benefits may outweigh at least some of the concern.
I just had a look in health food shop, the assistant said a plant based calcium supplement is good and like getting it from diet, not citrate or carbonate or anything, is that correct? It was expensive and I do eat lots of cheese and yoghurt so not sure i need it, but this discussion has put me off the calcium carbonate from the GP
Many years ago, long before PMR, I started taking calcium supplements. First I saw a suggestion that taking calcium with orange juice would help with absorption. Later I learned that calcium citrate was better absorbed than carbonate, and took that until I developed PMR and got a, to me shocking, recommendation to take AA. I did a lot of reading and found that calcium hydroxyapatite was better absorbed by people on pred, and have taken a supplement using this (sourced from mad-cow-free NZ cattle) since.
Along with this change I learned about Vitamin K2 which enables the bones to absorb calcium. Although we need Vitamin D to absorb calcium, it cannot direct it to the right places. That is the job of micronutrients like K2 and magnesium.
I've also read that calcium from plant sources is better than from dairy. There are leafy greens which are high in calcium, although of course not with the concentration you'd get from a supplement. Green vegetables contain lots of magnesium, important for bone health. Fermented vegetables and some types of cheese are also supposed to help with keeping bones healthy, possibly because they are one of the few sources of Vitamin K2 in our Western diet. Sorry, I cannot say anything about plant-sourced supplements. All I can tell you is that my diet, which includes a lot of foods like kale and broccoli as well as dairy especially plain yoghurt, and calcium hydroxyapatite along with other micronutrients in supplement form, has apparently kept my bones in good shape.
Hello my Parathyroid glands don't work well so have been taking calcium for a long time now also prednisolone. That's a high dose but may be necessary try splitting the dose into two away from the prednisolone. Look to buy the best calcium with vit D.K etc.not expensive on line.If you have to much calcium it will cause constipation only way to tell is frequent blood tests but keep it low normal or can get kidney stones.experiment with foods that help you go to the loo,and yes high cheese.milk.
Get a chart or app and record.Its a whole thing to manage.
Or last resort something to help with going to the loo from GP but if your anything like me I don't want anymore meds!.
I live overseas so have to pay. I buy Ultra Calcium by Pure Nutrition Amazon UK. Each tablet has 1000mg calcium maleate citrate (and other items) which is a preferred calcium salt
Advice about calcium tablets I can’t give you. But I’m an expert on constipation! I have found ‘inulin’ on a daily basis to be an answer. I have passed this on to friends on high doses of painkiller, after operations and on cancer treatment. If you can get unblocked and I suggest Fibogel as a first try then daily dose of inulin works for most. The dose size is what amount works for you. It is miserable being constipated!
I have osteoporosis and am taking prednisolone and calcium and vitamin D. I buy milled (or whole) chia seeds and sprinkle them on cereal, yogurt or any other food……they certainly deal with the constipation issue and reduces the need for more medication.
hello yes I’m on 1500 adcal d3 per day and I have not had that reaction. I’ve had PMR for 4+ years now and am on 3mgs. However, I do take magnesium glycinate every other day which helps the digestive flow!
Perhaps this is a good moment to share my experience with both calcium and constipation. I hope you won't find it 'too much information'.
I found that taking calcium in the morning directly after Prednisolone made my heartbeat even more irregular than it already was on Pred. It felt dangerous so I moved the calcium to later in the day which felt much safer. Calcium also interferes with the absorbtion of Thyroxine which I take in the mornings.
I have found in the past that calcium led to constipation and so have been taking half a tablet, but I fear for my bones so am trying to raise the dose to a full tablet. I try to take a tablet which includes Vit D and Vit K. I think taking it in the evening is a great idea to help with sleep, especially if it contains Magnesium as well.
Unfortunately constipation seems to loom rather large in my life so I have a complete battery of breakfast foods to help with it although I think I have been less constipated since taking Omiprazole and Pred. These are the foods I often add to my breakfast which I think help with constipation (prunes might be better for some but not for me):
-Two heaped teaspoons of cracked flax seed mixed with kefir or yoghurt and milk. I think these might be good enough on their own without all the items listed below but haven't dared try this.
-Desert spoon of pumpkin seeds to chew whole, or ground and mixed with the flax seed.
-Yakult, but expensive. This also may be enough on its own.
-Teaspoon of olive oil (neat or on toast)
-1 or 2 squares of dark chocolate.
-Occasionally a small cup of Coffee, on top of numerous cups of tea , for an extra shot of caffeine.
Seeing you use a mere tsp of olive oil, I thought you might be interested in a constipation remedy available here in Italy - Three Oils, equal parts of olive oil. almond oil and vaseline oil. The local palliative unit provided it for my husband and it was by far the most effective and gentle laxative he'd ever been given!!
Fabulous thanks! I will try and get this. Natural remedies are so much more acceptable to me than Fibogel. Although tbh I haven't really tried Fibogel, just been prescribed it and felt depressed by it and hidden it away somewhere. Others might be more rational.
Google "Tre Olio laxative" - I'm in Italy so obviously it comes up and is shipped. Be careful though - google thinks I mean Tree Oil and offers me tea tree oil which I DON'T recommend trying!!
However - no reason why you can't buy the individual oils and mix your own with equal parts of each. The recommended dose is 3 x 15ml spoons per day - mix 1 spoon each of the oils for the day. Olive oil, almond oil and liquid paraffin - just like granny used to swear by!!
There are plenty of other options for preventing osteoporosis other than Adcal which is probably one of the least effective ways. Have a look at the ROS website or call the nurses to learn about your options
Generally speaking, it's better to take magnesium separate from the calcium, as calcium supplement can interfere with magnesium supplement absoption. I think in foods this isn't an issue. But if taking magnesium without caring exactly how much gets absorbed, but for digestive or sleep reasons, your suggestion sounds like a plan!
Magnesium is actually plentiful in a good diet because it is to plants what iron is to animals. Meat gives you iron, green plants give you magnesium.
calcium tablets gave me kidney stones, consultant in a and e took me off them for a couple of months, I decided to leave them forever, that was at beginning of covid and I am fine
A quick update: firstly many thanks for so many helpful replies. Wonderful response. Secondly, things have greatly improved for me!
Most importantly I stopped the calcium tablets entirely and drank a lot more water which was a great help. I am now taking just one calcium tablet and things still seem to be working. I will experiment shortly with taking both.
This suggests my problem was exacerbated by dehydration. Not surprising as, having prostate problems, I have tended to avoid drinking…… not such a good idea! So the first step is to drink more, someone on here kindly said you need 2 litres a day which is my target.
"having prostate problems, I have tended to avoid drinking" - which will, in the longer term, create a lot MORE problems than having to get up at night!!! Kidneys don't like it for a start but it also increases balance problems and fall risk ...
Thank you for that, I hadn’t appreciated that my poor balance could be from reduced drinking. I am now consciously drinking more aiming for the 2 lites a day
PMR-bashed muscles don't help balance either of course. Low vit D is anpther factor that has been identified. But a care home that encouraged its residents to drink a glass of water every hour by bringing it around to them found the fall rate reduced markedly!
I've had the same problem with Calcium but I have started adding a Tbls. of psyllium to my diet (mixed with liquid, of course) in addition to a few prunes every day. Good luck. I know constipation can be miserable.
I promised a progress report. One calcium tablet instead of two did not work, same constipation problem so I have stopped them entirely for 5 days and the tummy is now fine. I’m taking my Vitamin D tablets instead. Also I am drinking a lot more (water!) but have had to cut back as I’m spending much more time in the toilet disposing of what I have been drinking.
Also, as a glutton for punishment with everything back to normal I’m trying the occasional calcium tablet. First one tonight. If the result is bad then I will stop them whilst here on holiday in Spain.
Can I say that, as a new person here, the amount of information is amazing and given with such goodwill, so thank you again.
Porridge for breakfast with seeds, a banana & sultanas, followed by 1 egg with1 bacon rasher on alternate days egg with a slice of cheese. Plus toasted roll with thin layer marmalade plus seeds on top. ( I know it’s carbs but I am addicted to marmalade)
Lunch: starter, sardine, cheese, salad, main, fish & vegetables including small amount of potato followed by natural yogurt plus fruit for pud
Dinner similar to the above , sometimes meat instead of fish but they provide a lot of fish here which is good.
And finally to clarify we are staying in a hotel with a buffet, I don’t eat three three course meals at home! However we do exercise & when we arrived I weighed 10stone 6lbs & won’t have put much on by the time we leave in a couple of weeks or so.
Yes, I make the most of a breakfast buffet even though I never eat breakfast at home! But it wouldn't have porridge, banana, dried fruit, the roll. Marmalade I hear you - I'd put it on a bowl of yoghurt ...
Yes, my logic is that porridge is supposed to be ‘good’ carbs and helps fight cholesterol. The banana is for phosphates which I understand are reduced when on Preds. I must give some thought to stopping the sultanas and the marmalade on yogurt!
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