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.)
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
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