Hello! thank you again for all your continued support and comradeship.
I am currently quite excited because, since being diagnosed with PMR in March, i have just got my very first face to face appointment with a real life doctor! So I am busy re-reading all your advice so i can go armed with questions/requests! (I think he/she may retreat again quite quickly haha!)
Anyway, my current question is about calcium supplement. I know I need to take one with vitamin VD but they are SO BIG, I am struggling to swallow them so i'm just looking at alternatives. So, l would like your advice on the dose i need and also whether i need Vitamin K as well as D? (i follow a gluten, (almost) salt, processed sugar, dairy and meat free diet, but i eat eggs)
Thank you!
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MakingDo
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no, I think it means mineral. Contains magnesium too, which is very helpful. I also drink raw milk which is from grass fed cows and contains nutrients lost during factory farming methods. It is delicious! Google for a dairy local to you.
It's Vitamin K2 you will be looking for, and unless your diet includes products from animals which are grass fed (never grain fed) you are likely like most of us to be deficient in Vitamin K2 so it is a good idea to add that supplement. There are different kinds of calcium supplements. If you are in the UK and want yours paid for by the NHS I think your choices are rather limited. If you are able to select your own, then you will be able to find something easier to stomach. Be aware that your single dose of calcium in whatever form should not exceed about 4 or 500 mg as the body simply can't properly absorb more than that at a time. And take your calcium at a different meal than the pred as they interfere with each other. Pred for breakfast, calcium for lunch and supper, or near bedtime with a little food or yoghurt, easier on the stomach.
And how nice to actually see a real live doctor! I hope you will have a good relationship.
Ah, thank you. I am in the UK but i am buying my own so I can chose. When you say single dose - most of them say i need to take two a day - so is that 500 per pill but 1000 per day?
Yes, no more than 500 per dose. It's also suggested that we check our dietary intake, because if you get a lot of calcium in your diet your need for a calcium supplement is not so great, even with the pred issue. There's info on line about optimum doses of calcium for various ages and gender. The best sources of calcium are really things like some leafy green veg, and in dairy some cheeses, and yoghurt. Less so liquid milk. I only drink milk in my tea, yet nevertheless I improved my bone density a significant amount in one year (my first year on pred) just through diet, a few supplements and appropriate exercise. Yoghurt is supposed to be particularly good for helping with calcium absorption.
Yep, that's K1. Truthfully it makes no sense to me for one to take that as a supplement. It is definitely K2, menaquinone, which has the property of sending calcium to the bones. Vitamin K1 is important for blood clotting, so this Boots supplement would be contraindicated for anyone on blood thinners, for example.
Why do they just dish out tablets willy nilly without explaining or giving options of other methods. When it is too late after we have researched ourselves leaves a lot to be desired.
You probably won't find one including K2 - and actually, I have never taken K2 in the 9 years I have taken calcium/vit D and my bone density hasn't deteriorated significantly, it was still firmly almost in the "normal for 30 year olds" range
In answer to a question you put to me befor on another thread 'how old do you think I am' think you have just answered that '30'. 😂😂
Now to question something on this thread ... How do I know if they have tested the strength of my bones or whether I need calcium. I am on AA Adcal and lanzaporole as well as pred.
30 is the age and average density they compare you with - I only wish I were! I've had PMR for over 14 years - I'd have been a teenager when it started
I did ask for printouts from the beginning but I am a nerd. I now get the info on-line which shows me the blood test results so I no longer needs printouts. It even draws graphs for me. Do you have the facility to look at your results on-line?
I don’t think so. Will check, but I renew prescriptions on line and haven’t checked anything else. Would be handy, even if I don’t understand, someone else would!
If you can get prescriptions on line you may be able to extend to seeing your test results. In my case I had to do it as two goes and take my passport to the surgery for test results and they updated their computer system for me to access them.
this seems to be such a complicated question! When i asked the pharmacist she said i didnt need zinc or magnesium because they were to help support the immune system.... i think i am getting steadily more confused am I worrying too much? - but if so, then why do they even mention or include these other elements?
Because they don't know everything. Here's a link to my "journey" - written a while ago, but a description of how I sorted out bone density issues quite handily.
I couldn’t swallow the huge Calcium bullets either. I asked for and got chewable Adcal. Quite pleasant really. You should be given the vit D and Calcium on prescription with our condition. Some people take vit K as well. I do when I remember.
Having got to the end of this thread I have learned that I am swallowing adcal when I should be chewing it! Honestly, I can't believe I've been so daft as to have missed this! Once again this forum sorts me out!
I have just read HeronNS's really informative post 'My Osteoporosis Journey' which she has just given us a link to. I have managed to get this information from reading her other posts and her advice is invaluable. I cannot follow her exercise recommendations as I have a problem with my spine and can only walk very short distances. I just do what I can and try not to worry.
It took me a while to sort out a pill taking regime. There is quite a lot that can't be taken together. I am not a vegetarian and can only use supermarket dairy products.
8.30 Take thyroxine. (this has to be taken first thing and no food for at least half an hour)
9.30 Take Pred
9.45 Breakfast - take fish oil, vitamin C, milk thistle, pain medication, low dose aspirin.
12.30 Raniditine
2.30 Lunch - 400mg Calcium Citrite, this supplement includes 37mg Calcium, (I am in the uk and can't get calcium hydroxyapatite)
400iu Vitamin D3 and 90ug K2.
6.30 Evening Meal - same supplements as lunch plus a multi vit.
10.30 Ranitide, pain medication and milk thistle.
The Milk Thistle I have only recently started taking as it is thought to help with neuropathic pain.
I am NOT recommending this regime just thought I would share with how I worked it out.
If anything doesn't go together I would be pleased for the advice.
Good luck with your Appointment. You are getting well prepared! Let us know how it goes. x
I would recommend that you take calcium citrate in preference to calcium carbonate (which is blackboard chalk and what the NHS prescribes and tends to end up in the blood stream rather than than the bones). It should be taken with vits D3 and K2 and magnesium. Manganese is also helpful. Look out for Dr Sarah Myhill's Multi Mineral Mix which you can buy online. It's pricey but it lasts for ages and has no dodgy fillers. This is what I do - the effect as far as I can tell is positive.
I have been prescribed the Adcal calcium carbonate. I also read that it was blackboard chalk. I bought Viridian Calcium Magnesium with Boron in powder form (calcium citrate 800mg) from Health Store. Dr thought it not strong enough. I end up so confused.
Hi I have used solray-D liposome spray with some success I had a bone density check and it was better than the one of five years previous reducing preds as recommended by PMR pro its produced by Physica in London Ontario Canada
Hey, I live 30 minutes from London, Ontario but have never heard of a spray.
I take Caltrate with Vitamin D times 2 daily.... 1 at lunch and 1 at suppertime. They are big tablets to be swallowed which is ok for me, but I do find they can upset my stomach a bit, especially if not taken with food.
Calcium citrate also comes in powder format that can be mixed with liquid and drank (instead of pill format).
Hi PMR Canada the company is Physica energetics I don't have an address but the liposome spray is just a couple of squirts under your tong and is absorbed into your blood stream directly similarly to the nitro spray for heart condition I wish you well
I get my vitamin D from natures best. They're not particularly big. They're a good company with a wide range of products. Postage is free on orders over £15. I get magnesium from them too.
If I needed Calcium?(osteopenia or osteoporosis),I would take 1000mg/day....but Calcium can deposit on your Arteries as well as your bone Particularly if you are deficient of K2 and D3..... Therefore I would recommend 2000 units of vitamin D3 and 200 mcg of vitamin K2 MK7 to keep the calcium out of the arteries assuring that it deposits into the bone.
I have been getting my K2 from Natures Best too but this morning bought 30 capsules from Holland & Barrett for £5.99, special offer at the moment. However noticed when I got home they are a lower dose 🙄 50ug rather than 90. Wonder how much I need?
K2 from Natures Best suggests 1-2 capsules at 90ug. H&B 1 capsule at 50ug! Your article was very helpful. I have never read that D3 should be taken separately, 8 hours apart. Does ug also mean Mcg? Thank you so much for the help.
My capsules say 1 per day, 100 mcg. Australia has a suggested standard of 180 mcg per day, the only "official" recommendation I've heard of. I found 100 mcg was not enough to keep my sensitive teeth at bay. With 200 mcg per day my teeth as are as insensitive as I could hope for, so my assumption is that the bone in my jaw is more dense, and I have read somewhere that Vitamin K helps teeth, although I don't know how it could. I've even heard it is good for skin, something for those who have severe skin thinning problems with pred to keep in mind as maybe it does help, but, again, I don't know any more than that, which is, basically, hearsay.
My head just completely exploded with all of that. My processing difficulties make it difficult to digest and make sense of a lot of it. Looking for a simple answer. Is there a multi vitamin which can be taken alongside the Adcal? 🤯🤯🤯🤯🤯
I read today that in the US six billion dollars is spent on supplements and most of it is not needed. Why do you think you need more vitamins? Have you been found to be deficient? You may find you are just boosting the supplement companies’ bank accounts.
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am I worrying too much? - but if so, then why do they even mention or include these other elements?
Vitamin K. 
Vitamin D and Fatigue
Vitamin D Supplements and Health
Rheumy does not believe vitamin K is useful
