Vitamin supplements : I'm working know making sure... - PMRGCAuk

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Vitamin supplements

Seal49 profile image
40 Replies

I'm working know making sure I take the right supplements and amount each d ay while on prednisone such as calcium D C turmeric zinc etc. Does anyone know what they are and amount. Thank you.

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Seal49
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Now you have asked the question you will see related posts - either on right hand side of your screen or down below current posts - depends what device you are using..

However guidelines say you should be prescribe a vitamin D/Calcium supplement to protect bone health - that happens in UK but not sure about US.

Dochaz profile image
Dochaz in reply to DorsetLady

When are you supposed to stop taking the vitD/calcium? I've been told by the internist who monitors me that as long as I eat enough dairy and get enough sun, I can stop now (down to 4 mg/day).

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Dochaz

Think that’s probably an individual thing, but whilst you’re on Pred that’s depleting effect of calcium -so perhaps you should continue with supplements until you come off the steroids..and what is recommended on latest DEXA scan.

I’m still on it -as recommended by DEXA scan report (2019 -3 years after finishing Pred)..

Pass7 profile image
Pass7 in reply to DorsetLady

still on Calcium since 1992 after a hysterectomy. When taking prednisone and calcium wait at least 2 hours between.

PMRpro profile image
PMRproAmbassador in reply to Dochaz

I stopped calcium supplements a few years ago because of bladder irritation - good excuse to eat loads of cheese ;) But I take vit D - and more of it than in the supplements. Even after a year on Actemra I'm still on 6mg pred, I was well into double figures then

lennysmummy profile image
lennysmummy in reply to PMRpro

I had to stop for same reason… I can’t eat cheese as upsets my stomach. Just hope I get enough with other foods I eat. How would I know? 🙏

PMRpro profile image
PMRproAmbassador in reply to lennysmummy

When you say cheese upsets your stomach - is that ALL cheese? Cottage cheese etc are also sources though parmesan is far and away the best! Yoghurt, Skyr and kefir are all also good - kefir being the best, I get a quarter of the RDA from the milk I use - and I only use it in tea, about 1/4l a day.

agingfeminist profile image
agingfeminist in reply to Dochaz

the calcium can be done with diet...don't ever stop the vitamin D. After the age of 60 the amount of vitamin D produced by the skin decreases rapidly.

Sophiestree profile image
Sophiestree in reply to Dochaz

I wonder why they suggested you stop Vit D? I have been taking 4,000 iU like PMRpro for nearly 10 years and recently requested it to be checked alongside other things and it was 126 nmol/L [50.0 - 150.0], granted on the higher end, but I had several occasions where it dropped to 25/30 and was given the huge doses someone mentioned on here, over a month to get it back up, hence the recommendation to take 4,000 iU a day.

Dochaz profile image
Dochaz in reply to Sophiestree

I've never had vit D levels measured. In France they tend to prescribe it for the winter months only. I'll ask next time I have an appointment 🌸

PMRpro profile image
PMRproAmbassador in reply to Dochaz

I never understand that view - the summer is to build stores for the winter but at our age we tend not to lie in the sun without clothes and suncream even in summer do we!

Sophiestree profile image
Sophiestree in reply to PMRpro

I think my problem is I have never sunbathed and so the need for Vit D. Happy to be outside, but don't have the required exposed skin for that.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

I found on higher doses of pred my skin didn't change colour in the sun whereas all my life I just acquired a tan without ever trying. I also note my hands and arms are darkening again.

Sophiestree profile image
Sophiestree in reply to PMRpro

Interesting, always learning what Pred can do. I know Pred can make you bruise more easily, but I have noticed since stopping TCZ it is nowhere near as bad as when I was on TCZ. Also the eye infections stopped. Wouldn't have affected my decision to take it though, and still would if it was offered.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

The dose of my anticoagulant was put up to the higher level by the cardiologist - so now I have to be careful what time I do the injection! I bruise now and once bled rather more than was fun!

Sophiestree profile image
Sophiestree in reply to PMRpro

yes, I can see that would happen! so hard to juggle them all.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Wasn't a problem at the lower dose!

Sophiestree profile image
Sophiestree in reply to PMRpro

Interesting

Dochaz profile image
Dochaz in reply to PMRpro

Not to mention the more fair-skinned among us who have been repeatedly advised to avoid the sun at all costs 🤔

Louisa1840 profile image
Louisa1840 in reply to PMRpro

Oh come on Pro! Surely wearing the skimpiest of bikinis and with our steroid (pregnant) stomachs? It's the latest look......

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

Yeah, if you say so ...

Boss302Fan profile image
Boss302Fan in reply to Dochaz

Whether to take Vitamin D (or D3) or not should be based on your blood levels regardless as to whether have PMR or not. I’ve continued to take Vitamin K2 Mk-7 regardless also as in addition to bone health it also benefits the cardiovascular.

As to the Calcium, I cut it back to 350 mg/d when I was less than 5 mg/d Pred. Cut it out completely when hit 0 mg/day. I do consume quite a bit of dairy and vegetables. Regardless my blood workup always showed my blood calcium near the UL so I must of had plenty throughout my ordeal and sending a lot out my urine…. hmmm, never thought about having my urine analyzed for calcium.🤔 Only other place it could go would be deposited elsewhere and the K2 Mk-7 is supposed to promote deposit to the bones (as needed) and not on the arterial walls.🤷🏼‍♂️

Mayadill profile image
Mayadill

Hi, recommended daily intakes here:

eatforhealth.gov.au/nutrien...

My experience is read labels carefully. Here in the UK if you bought a multivit from a supermarket or pharmacy chain the numbers are safe. You'd get 100% of everything. It's not like that on Amazon! Especially with organic and/or vegan products. There's one innocuous looking multivit that on closer inspection contains 4000 times the recommended intake of B12. Happens the other way round too: 100% this, that, then only 20% of something. Iron is another pitfall for men and indeed for all of us here. Multivitamin manufacturers appear convinced the NRV for iron is 15 mg. Only for menstruating women. For the rest of us it's 8 mg.

PMRpro profile image
PMRproAmbassador

It's a question you will get as many different opinions as you get replies. At the start I took calcium and vit D supplements but a few years ago I stopped the calcium because it was causing bladder problems by forming grit in the urine but I do still take 4000 IU vit D. Other than that, I take no supplements. Pretty much everything else you get better from a good diet and none of the supplements are proven to help.

Always check they are compatible with the other medications you are taking - for example, turmeric isn't good with anticoagulants, and as supplements often upsets the stomach, beter to use it in cooking. And just because a small amount of a supplement is good, it doesn't mean more is better - you can overdose on them too.

Boss302Fan profile image
Boss302Fan in reply to PMRpro

From natural sources are always the best although maybe not very palatable. Not sure how good the produce is in the UK, but in the US, unless grow it oneself, probably not the greatest or safest on the long-term. We’re a herbicide / pesticide crazy bunch.

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

Living in Italy they are quite strict about what is used - and insofar as it is possible organic is not only good but also reasonably affordable, especially as we have a chain of AUstrian supermarkets here and the Austrians are VERY "in" to organic ...

Miserere profile image
Miserere

I take Vitamin D and K2, magnesium, multivit, Co-enzymeQ10, Fish oil, extra Vitamin C - I use Lamberts as I know I can trust the make.

Animalover65 profile image
Animalover65

Hi, in addition to the prescribed VitD and calcium tablets I try to follow a generally healthy diet and include milled Linseeds with breakfast, a sprinkle of tumeric in cooking and fresh garlic or garlic granules and onion and tomato paste or chopped tomatoes .Apparently fresh ground pepper works with the tumeric. I have also recently learned to bake bread. I also ty to avoid as much processed food as possible. Although smarties are my guilty pleasure and the odd glass of red wine is recommended.

Polygolfer profile image
Polygolfer

Dear friend, depending what part of the world you are from, vitamins and supplements are a way of life for many people, as they are bombarded with advertisements and marketing on a gargantuan scale.

My doctors have always explained to me that most of these vitamins and supplements simply get washed down the toilet as your body only uses what it needs and throws the rest happily away. So if you have a normal blood test, get enough exposure to sun and eat a balanced diet rich of vegetables, pulses, protein, fruits, nuts etc. then you simply don’t need vitamins or supplements!

However, if you don’t have a healthy diet, no matter how many vitamins and supplements you take I suspect the damage will always be there!

PMRpro profile image
PMRproAmbassador in reply to Polygolfer

Exposure to sun for vit D doesn't always work - at age 60 you produce a quarter of what you produced at 20, there is very little in food in Europe (in the USA milk and orange juice is fortified) and being on pred depletes the body of vit D. But otherwise - you are right.

Polygolfer profile image
Polygolfer in reply to PMRpro

Don’t disagree, and here in the UK it is a generic advice for over 65’s but it’s as good as any generic advice. However, as I said in my post, if you have a deficiency it will show in your blood test, so a normal blood test is probably an indication you do not require any additional vitamins or supplements. In fact, excessive vitamin D, especially when you don’t need it, can be a hazard for the elderly.

PMRpro profile image
PMRproAmbassador in reply to Polygolfer

It can - but a lot of doctors don't do the specific test for vit D and are convinced the very low dose in the supplements we are given is adequate. And you STILL hear assertions that vit D can be gained from diet - which in Europe is virtually impossible unless you eat a lot of wild salmon and very large mushroom omelettes!!!

Boss302Fan profile image
Boss302Fan in reply to PMRpro

Also natural sources of Vitamin K2 aren’t normally consumed routinely as part of a diet. I least I don’t…

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

PMRpro profile image
PMRproAmbassador in reply to Boss302Fan

Not in much of the western world - lots in kimchi and natto in Korea and Japan and it is becoming more common in the UK, don't know about the US. Here in central Europe it is raw sauerkraut and "proper" cheese and grass-fed dairy and meat isn't bad. My milk is exclusively from grass fed cows and local cheeses are the same as is good meat.

Oh-my profile image
Oh-my in reply to Polygolfer

There are some suppliments you do need to take and cannot get from your diet if you are vegan; B12 being one of them. B12 is in nutritionl yeast products but it still feels like you are taking a suppliment

Boss302Fan profile image
Boss302Fan

If your calcium source is from natural food there is no upper daily limit. If you choose to supplement, recommend not taking more than 800 mg/day, and I suggest taking it in the form of Calcium citrate as is more easily absorbed.

Take with Vitamin D3 and K2 Mk7. The amount of D3 to consume depends on your blood levels and your doctor can prescribe blood workup to see your base and work from there (I’m 68 yo and take 2,000 IU 2x/day). Vitamin K2 Mk-7 200 mcg daily.

As always discuss with your Physician. You may get push back on Vit K2, it’s not the same as Vitamin K1.

well.org/healthy-body/compl...

Mansplainer101 profile image
Mansplainer101

I was only diagnosed with PMR late in 2022, but for years prior to that my doctor put me on a vitamin D3 supplement of 3000 IU daily.

I have a physical each year. My lab results show the reference range for Vitamin D to be 30.0 to 100.0 ng/ml and mine last year was 51.9.

Looking back at old lab results from 2010, before I began taking the vitamin D supplement, I see that my vitamin D levels were 41.7.

When it comes to calcium supplements I was surprised, reading this thread, not to see any mention of Fosamax, which my doctor put me on at the same time he put me on Prednisone - specifically to counter the bone loss side effects of Prednisone.

Looking up Fosamax I find this: Fosamax is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures.

PMRpro profile image
PMRproAmbassador in reply to Mansplainer101

"I was surprised, reading this thread, not to see any mention of Fosamax"

That is because the question is specifically about supplements and Fosamax/alendronic acid is not a supplement but a prescribed drug,

Mansplainer101 profile image
Mansplainer101 in reply to PMRpro

Mea culpa, mea culpa, mea maxima culpa! If I remember my high school Latin correctly, that is.

PMRpro profile image
PMRproAmbassador in reply to Mansplainer101

:)

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