Good morning all
I have had PMR for about a year now, i'm down to 4mg prednisolone, gradually reducing to 3mg. I take a vitamin D supplement but try to keep my calcium levels up with food, which isn't always easy even on a really good diet. I've heard a few scary stories of complications through over dosing on calcium tablets. Can anyone advise please, thank you, regards, Judith
If you have got down to 4mg I doubt you have a lot to worry about now. The theory behind the calcium supplements is that having an excess available makes up for the increased loss of calcium through the kidneys which tends to happen when on steroids and bone density loss is also more when on steroids at a high dose. Have you had a dexascan at any point?
The study that suggested it was bad to take calcium supplements also found that it was not found when people also took vit D supplements at the same time. It was also suggested that it was calcium supplementation in younger healthy women with a good diet that posed a problem - i.e. they didn't really require the extra.
When I presented my GP with a conundrum, find me a calcium supplement that does not contain artificial sweeteners, he was unable to do so. So his solution was: “Do you drink milk?” “Yes” “oh well you probably don’t need it then”
You can take that ‘advice’ with a large dollop of salt. I did. Although I’m not religious about taking my calcium supplements. I do drink FF milk, eat plenty of FF yogurt and oily fish with bones, plus green leaves, cheese and almonds.
(Pharmacist was also unable to find a calcium supplement without sweeteners, but H&B do one.)
I also live in a hard water area...
‘....the United States National Research Council has found that hard water actually serves as a dietary supplement for calcium and magnesium.’ I wonder if there is a correlation between those who get bad cramps and soft water areas?
As PMRpro says the recommendation to take calcium supplements really is to counteract the effects of pred. Most of us do get enough calcium in our diet, especially if we eat plenty of leafy greens and, not so much liquid milk, but certain cheeses and yoghurt. As well as Vitamin D you should probably consider taking Vitamin K2 as this vitamin, along with magnesium, makes sure the calcium actually goes into the bones. Vitamin D doesn't do that, it needs the K2 and magnesium to help it. Vitamin K2 has some beneficial effects on the cardiovascular system as well. It is quite different in its function from Vitamin K1, which you'll be getting from your leafy greens!
Hi Heron
We've spoken before about calcium and how I need to take Vitamin K2 to help disperse it correctly. It isn't prescribed on the NHS and I am having difficulty getting some locally so will be looking online. I've read it's recommended to take 45mcg K2 per 1000 iu vit D3 is that correct? I'm not taking magnesium either can you advise me what dose I should be taking. I've just had results of an x-ray saying I have 'calcification along the wall of the Aorta' could this be because of the build up of calcium? I've never had heart problems before.
I'm not medically trained, but my understanding is that buildup of calcium is one of the things Vitamin K2 is reputed to prevent. I'm afraid I don't know anything about ratios of K2 and D3. I think it's unlikely to be a helpful calculation for many of us as our needs for Vitamin D vary so widely. In my case, for example, I can't take more than 1000 IU per day or my level goes too high, whereas many people need twice or even four times that. My bottle of K2 suggests 100 mcg per day. I take two, morning and evening, and have found that this is the dose which seems to stop my teeth from being too sensitive. I know a person on another forum, in Australia, whose supplement bottle says to take 180 mcg per day. I think it's hard to overdose on K2, unlike some other vitamins. I can't get it from any of the pharmacies here. I buy it at stores which specialize in health products. That's also where I buy my calcium supplements as the pharmacies don't seem to have a particularly good choice when it comes to supplements which will really help the bones! None of my supplements are covered by any insurance in my province, in Canada. Please note there are two main kinds of Vitamin K2, K2-4 and K2-7. There seems to be disagreement which is better, but the recommended dosage differs quite considerably, so read the label on your supplement bottle. I take K2-7 which is derived from the Japanese fermented soybean called natto. The K2-4 form is what is produced by grass fed animals and which you will be getting if you can eat products from animals which have been grass fed (never grain fed). Humans are not particularly good at converting the K1 form to K2 in our own gut, although apparently we can make a small amount, which is why it's important to have either a reliable and abundant food source or to take a supplement.
This looks like an interesting article:
That's really helpful Heron, you know what you are talking about, I don't but am learning from you for which I'm grateful. I do eat a healthy diet but my problem as you know has been the bladder discomfort which is improving greatly since I changed my calcium dose to half previous dose and twice daily, as you suggested.
In theory then the K2 can help my heart issue? I looked at a spray form of K2 - mint flavoured - but didn't buy as need to do a little more research first of all.
Should I be taking magnesium as well, what does that do?
Magnesium and calcium need to be in balance. When we take calcium in the absence of magnesium this balance can be upset. Too much calcium actually appears to inhibit our absorption of magnesium, so a magnesium supplement shouldn't be taken at the same time as calcium. I think the supplements which contain both do so in order to maintain the balance. Magnesium is also important in helping the body to use calcium efficiently. I prefer to get mine in the form of an occasional long soak in a bath with epsom salts. There's quite a lot of magnesium in a healthy, varied diet, magnesium being to plants what iron is to animals. An interesting book is The Magnesium Miracle by Carolyn Dean. And if you are interested in learning more about K2, try Vitamin K2 and the Calcium Paradox by Kate Rheaume-Bleue.
I found this, distracted me when I was trying to find out more about the spray version of K2. I think it gives a pretty good overview and answers some of your questions:
wellnessmama.com/54423/vita...
Only glanced at it but it certainly looks good, will definitely read it through, thank you so much Heron.
I've been learning too. As far as I know there's only one Vitamin K2 available in stores near me, but this idea of a liquid form is interesting. Apparently vitamins taken in this form are absorbed much more efficiently and quickly, including K2. There's also the caveat that most soy is GMO, so it's good to look for organic version.
Reluctant as I am to add more pills and potions I ordered K2-7 online as I couldn't find it anywhere locally and also use a magnesium spray which has made a real difference to my sleep. Bonus! It's a constant learning process, isn't it.
Thanks for that Slowdown and yes it certainly is a learning process, my GP, Urologist and Rheumie have never heard that the calcium might be causing my bladder irritation, amazing I've suffered for nearly two years, hasn't gone totally but is definitely better and hopefully go when I've got this K2 - fingers crossed..
They come in tablet or capsule form which have you found to be the best for you, found one site that sells 365 tabs for the same price as say 30/60 by other companies, dosage similiar - they are made in UK so should be okay?
2nd go at Replying, I'm getting very sloppy with pressing the button! I haven't even opened the bottle yet, having an IBS episode so leaving it for the mo. They're 60 x 45mcg. tablets - reading the label the natto (soya) isn't organic and there are fillers etc. Expensive too, £19. Our bodies = science labs. We are the experiment..
Interesting, like you I am being cautious until I'm satisfied I might have found the right one. The one I've been looking at sings it praises as being UK produced with no nasties, I'll have another look to be sure, and the price is much lower than yours. I'll let you know what I come up with if you like? It is a minefield I'm afraid but sure we'll get there.
Sorry about your IBS and I would do the same, leave things until it settles as you won't retain the goodness anyway, poor you. Best wishes.
PS: I too learnt the hard way re not pressing the button, if you go off the page it doesn't save anything!!
Re K2 tabs - I've been using the Healthspan ones, which are ~£17 for 60 similar tablets. Waiting for next lot to arrive, so can't say if organic. But they don't upset my stomach, which is a major factor.
I take them daily w vitamin D3. I avoid calcium supplements - stick to calcium-rich diet. Fingers crossed.
Can't cope w magnesium tabs - v hard on stomach. Do occasional Epsom salts soak, when I remember.
Thanks to all for helpful info.
Thanks for that info .. I'll look them up. I don't take calcium either, due for a dexa scan soon so we shall see. The magnesium is a body spray, 6 or 7 sprays at bedtime seems to give me a better night's sleep along with lavender pillow spray and Bedtime Tea (I'm nothing if not determined!)
Hi HeronNS
Just back form holiday so catching up with everything.
So glad I read this. I've been having problems with my teeth since starting on Pred, or could it be the PMR. My gums have receded considerably and my teeth have become sooo sensitive. Haven't seen anyone else mention this. I take 1000 IU vitD a day. I'm going to order the K2-7 today. Fingers crossed it will help with the sensitivity. Do you know if there are likely to be any side effects?
Discussion with dentist a couple of years ago, agreed it was the pred which caused accelerated gum recession, which hadn't ever been a problem before - it seemed to happen quite suddenly. I have had sensitive teeth for a while, though, and certainly much better with Vitamin K2. I even cut back on the K2 for a while and tooth sensitivity increased, so I went back to my twice a day dose and after a few months they are better again. Could be coincidence, but I think there is a connection. Btw after this thread started I checked my bottle of K2 and it says NO GMO ingredients. 
I hope it has the same effect for me.😬
Can it be taken at the same time as Pred and vit D?
I take one dose in the morning with pred and D, and the other at suppertime. I have never heard if pred interferes with any vitamins, although we know we shouldn't take it with calcium, and probably unwise to take it with other prescription meds. As Vitamin D and K2 work together I think it must be perfectly fine to take them together.
I don't think K2 has any side effects. but check with your doctor or pharmacist if you are on warfarin type blood thinner as it may mean you should only have a minimal dose. Otherwise I believe it is difficult to overdose on K2 and in Australia I think they recommend something like 180-200 mcg per day. No RDA in Canada or US yet, as far as I know. I take 200 mcg total daily in two doses.
The one I've ordered is 75mcg and it says to take one a day.
Thank you so much for all this useful information x
I always suggest that people take the dose recommended by the supplement manufacturer. If it seems advisable one can always adjust later, as I did.
I have had osteoporosis for over 15 years & used to take calcium supplements until my GP took me off them saying there had been studies showing they cause heart attacks. ( I think this may be what you and PMRPro are referring to). I instead changed my diet to include the necessary levels of calcium, now eating a lot more tofu, chick peas, quinoa, cheese, yoghurt, almonds, broccoli etc. Another really good source is blackstrap molasses. (I didn't find too hard as am vegetarian & was already eating this type of food, though not targeting the calcium rich food
Calcium supplements etc.
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Calcium supplement
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